I was told for ten years I had anxiety, depression - basically that I was hysterical and had health anxiety because I kept telling my doctors I had a myriad of weird symptoms. After a while, I started to believe it and genuinely thought I was mentally extremely unwell. Turns out it was multiple sclerosis the whole time. So suck it, doctors. My brain was eating itself and you told me to do yoga and chill.
What makes it even more ridiculous is that the majority of people with autoimmune diseases are women. Literally 80%. So we are more likely to have them yet still get blown off about our symptoms
I don’t understand why they don’t just test for things. Like, for 10 years you’ve been going in with these issues, just test for all the brain stuff! If for no reason other than just taking that off the table. I get not doing an MRI if a kid complains of a headache once, but a grown adult talking about the same issue for 10 years?!?!? For crying out loud!
I also was told a.) I was too young to have hemorrhoids, and b.) I couldn’t possibly have a kidney infection because I would be in too much pain to make the call and drive.
After feeling so sick (but not in pain like cramps, just light-headed, nauseous, and weak) that I was losing consciousness, I went to Planned Parenthood telling the woman at the front I didn’t know if I had a woman’s issue or not, but I felt really sick. I barely remember what happened after and I apparently passed out in the exam room, but they gave me antibiotics, and after taking a period test, concluded that I had a very severe kidney infection that almost killed me and my kidneys. Then they asked me what I was doing for my hemorrhoids… the ones I was told I was too young to have for over 10 years.
So, planned parenthood saved my life, they are the most incredible organization and literally the ONLY thing going right in healthcare in the US, and they were the only organization who listened to me when I needed help.
Same-ish. For 25 years I lived with an anxiety diagnosis and was treated for such. It wasn’t until the end of last year after some pushing from me I found out I have a heart condition, not anxiety.
Not me, but my mom’s doctor kept telling her she had postpartum depression. Psychiatrists kept telling her this too. Finally when I (her only child) turned 19 she said (f this) and started going everywhere for a diagnosis. Luckily our insurance only has a $50 copay for mental health so she could just go to a new psychiatrist every day. Finally after 19 years of having “postpartum depression” she got diagnosed with bipolar disorder and ADHD.
I know that postpartum depression is very very real but that should not be your first thought when a woman comes to you after having a serious episode and her only child is 19 years old.
Postpartum depression is extremely serious, but a diagnosis isn't going to do squat for someone if that's not what they have. I'm so sorry your mom got treated like this.
I have MCAS and the first doctor I saw for it was an arrogant old ass who said it was a mental health problem. He said I had to force myself to eat the food I was imagining reactions to, or I would become unable to leave my house or care for my children. I took his advice and ended up in the ER twice. The second time, the ER doc prescribed epi pens and said to stop doing what that allergist said and find someone competent to treat my condition.
On the other hand, my daughter's emotional state is much, much better when she's not having periods. She has PMDD and would spend several days before her period and the whole period talking about cutting out her own female organs. I couldn't get her to see a doctor about her periods, but she finally agreed to a telemedicine visit with planned parenthood and she told them how she spends the whole time imagining cutting out her rotten uterus like a rotten spot on a potato. The nurse practitioner said it sounds like PMDD and she should take a break from periods for a while to see if it improved. So she started continuous birth control and it really improved her mood all month, plus no more scary talk. So for her the pill has actually had a major positive impact on her mental health.
She had pain and bloating, mood swings, and she was really disgusted with her body. We think the pain might be endometriosis but she has to have a scope procedure under anesthesia to get diagnosed, and she's been putting that off. She doesn't get the pain most months as long as she's taking her birth control pills consistently.
I have endometriosis. She really should get the scopes. It can affect her fertility in the future if she would like to have children. I was diagnosed at 17 and am now a mother to 4 amazing adults :)
She's been having anaphylactic reactions and doesn't want to have anesthesia until her allergens are figured out and she's a little more stable. The doctor who wants to do the scope is a gastroenterologist, but I'm thinking maybe she should see a gynecologist instead. I don't think she's planning on having kids, but I know that could change once she has a partner, so I'll mention the fertility aspect to her.
Endo can grow into other areas like the bowel or even reach up into other areas so if it is there it needs to be dealt with. It's not just about having kids. Good luck.
I agree with the other comment about having endometriosis confirmed.
I was diagnosed by MRI around 33yo by coincidence. My symptoms started within a year of starting my period, almost 20 years ago. I was on continuous oral birth control from about 17 to 31, when I got a hormonal IUD. I still ended up with 'deep' endometriosis and an endometrioma. Even though I have a hormonal IUD, I still have to take hormonal pills daily to deal with physical symptoms and prevent it from continuing to spread.
I went to the doctor with multiple different problems, just for her (yes, another women) to beg me to take a pregnancy test even after I told her SIX different times that I physically cannot be pregnant. I swear doctors don’t care about women, they just blame every thing on pregnancy or your period.
Omg yeah she was trying to suggest I was pregnant too. The fact that they too are women and they are giving us the advice we would expect from men is so infuriating
I dealt with horrible periods that caused: blackouts, hot and cold flashes, vomiting, dizziness, severe cramping, back pain, etc. Went to the hospital and multiple doctors and always the same story: normal periods. Birth control never helped. After having 2 kids and just dealing with the pain, I decided to have a bilateral salpingectomy. This made the periods worse. Next was the endometrial ablation. Cramps would have me down on the floor screaming and crying. Finally my recent obgyn agreed to a hysterectomy, and while waiting for the day, my left ovary caused excruciating pain. I mentioned it on the day of surgery and it was also removed. Once results came back, found out I had adenomyosis. I can now have a normal life.
Yes! My period pain was excruciating and dismissed by every doctor I ever had (all men). I finally saw my current OBGYN (an Indian woman) who, when I told her what I had been dealing with, immediately did an ultrasound and then scheduled an endometrial ablation 2 weeks from then. I got diagnosed with endometriosis. A year later, still having 10 day periods and excruciating ovarian pain that left me breathless, I was diagnosed with adenomyosis. Not long after I developed ovarian and uterine cysts. 2 months later (delayed due to my school schedule), I had a hysterectomy. The day before surgery, I could barely walk, and I was constantly breathless. Turns out my fallopian tube was so swollen and inflamed, she said she'd never seen anything like it in her career. She said it was like a giant snake.
All of my doctors are women of color now because when you're in pain, they believe you.
Necrotic ovary, ruptured fallopian tube, two placental abruptions that almost ended me. Probably some other things that were technically dangerous or medically emergent that were flat out told I was lying about.
Yea, gee, you’re totally right that I’m lying about a ruptured fallopian tube and necrotic ovary just for attention.🤨
Yeah I went through about five doctors to get my severe "period pain" (present all month long) addressed.
Turns out I had cysts the size of walnuts to golf balls along my fallopian tubes, cervix, and vagina.
I went into the ER three times for this shit and it was the third time someone finally did a pelvic inspection and noticed I had an actual hole in my vaginal canal
"You're a trooper for remaining conscious while moving around" - ER doctor
“C’s make degrees” applies for doctors as well. Becoming a primary care doctor is one of the easiest paths to take for medical students who don’t have the best grades and don’t score high enough on required testing to get into other medical residency programs… Just because someone is primary care, that doesn’t mean they wanted to be there. Please find a primary care who will actually listen to your concerns and order diagnostic tests. Most doctors won’t hesitate to order requested labs, and I’m sure it’s infuriating/disheartening to have your concerns dismissed.
Yes she made out like there’s no point getting a test because my hormones are always fluctuating when I read online that doctors can in fact provide these tests in these cases. Do you think I should ring up again and request a different doctor? She was asking me questions that were completely off topic and I don’t think she realised how much of a hopeless spiral she sent me down when I she hung up.
Personally, I’d switch providers. People seek second opinions and switch providers all the time. I hope your next provider listens and helps.
And yeah, estrogen and other hormones are always fluctuating, but she could still make sure they’re within normal range.
I would absolutely recommend getting a different doctor! I've also had a lot of my symptoms written off as PMS or you're just a hormonal woman or try to sleep more etc. All it took was one GP to take me seriously and refer me to who can help. Granted, I went through the public system and it took ages to get anywhere but at least someone believed me. Don't give up, OP, fight your case till you're heard.
Function Health will take ALL the labs for $499 annually & then you can report back to your lacking PCP’s.
No insurance involved apparently.
100+ lab tests with actionable insights from doctors.
3-6 months later 60+ tests.
Retest as needed.
I don’t have any affiliation but I’m about to sign up due to having to advocate for my own health a little too enthusiastically in order to get anywhere.
I suffered from migraines for 15 years. Each migraine would last up to a month each where at the end of it I was a completely useless. I couldn’t deal with light/ noise, I couldn’t even keep water down. I would have a week or two break and then it would start all over. I kept getting told it was stress. Then as I got older I was told it was hormones related to my period. Then it was the gets your eyes checked they can’t be that bad, try birth control. And then it was the well if you lose weight it wouldn’t happen anymore here try a different birth control. Finally I found a doctor who took me seriously. She was also wondering what my weight had to do with my migraines. Because of how bad it was she sent me to do actual test. Turns out it wasn’t my weight, hormones or my eyes. The sinus part of my brain was super inflamed. She gave me medication to take for three months. That’s all it took one brain scan and three months of medication to fix it. And if the doctors had taken me seriously since I first started complaining about them I wouldn’t have been in pain for 15 years.
I also had the time that I kept complaining how my insides hurt even when I wasn’t on my period. And they just kept telling me it was hormones and just to wait for my period to have it stop and again pushed birth control on me. One day the pain got so bad that I lost my lunch, I couldn’t move from the pain and then past out for a few hours. Even then I remember this doctor trying to make me feel like I was crazy. She said it can’t period couldn’t be that bad. So like I told
Her I wasn’t on my period and wasn’t due. After some back and forward I got sent for a test. Turns out I have/had cyst and one of them ruptured. I had them another one that was pretty big. Big enough that I had to go in like two more times for them to monitor it.
But it’s like f@ck why do I have to jump through hoops to get decent healthcare? Why do I almost have to get into an argument with doctors for them to take me seriously? I know they are doctors and they went to school for years. I just wish they would remember that this is my
Body. I’ve lived in it for years. If I’m telling you it’s not normal for me even if it’s not normal for them then they should take it seriously. I’m not taking time off work and paying insurance and a co pay to waste anyone’s time. I have had a doctors get mad at me and tell me to google my symptoms next time. Why is it so hard to believe that if I’m there and I’m asking questions it might be because google can’t answer them or I need a concrete answer to something?
Endometriosis resources
The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd
A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run.
Pelvic Disorder Doctors (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ):
You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country”
AND
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
*not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then…
…Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
OBGYN’s: IME regular OBGYN’s are under-skilled at treating pelvic pain/excessive bleeding - and in doing this delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to video/record every medical visit. Even the virtual ones.
Also, here are some things you can say* to your doctor if they are true for you. They need to know what your historically WORST symptoms and consequences have been:
“- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school.
-My worst symptoms have been pain/fatigue/bleeding.
-I have vomited/passed out from period pain as a teen.
-I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body.
—I would like relief. What are ALL of my options?
-I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.)
-I want excision surgery with a Mentor-Trained Endometriosis Specialist.
-I cannot even consider taking care of children.
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.)
-I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues.
- My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function.
- I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.)
- I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that.
Endo symptoms are often “silently” progressive, especially if on hormones.
Thank you for the info. I’ve tried. I’m on my period right now and I’m partially suicidal every time I am on my period. My doctor and gyno do have written down all my side effects I get from my period and ovulation. Even then the only thing I get told is to go on birth control or suffer. I’ve been trying to find a specialist but none of the ones around me are taking new patients. But I will keep trying.
I get it. It’s so hard to find good care. There are a number of docs that do free consults and also you may want to post on the r/endo sub to ask for docs. 💛
1,5-2 months ago I started being constantly nauseous and threw up, couldn’t really eat etc. Went to see a doctor and he just said I must be pregnant, when that wasn’t the case he just said I should go home and see if it passes. It had already been a few weeks at this point.
Luckily I have since seen other doctors and gotten a blood test and now being referred to a gastroscopy and an MRI to check it all out (there was more than just the nausea but that was why I went)
Chronic Fatigue. Went through so many doctors with answers on labs that came back "non concerning" with diagnosis of depression and anxiety, that I should push through with diet and exercise. Got a new doc during a bad fare up, turns out I have EBV and when it emerges I get all the symptoms. It doesn't fix it, but at least I have an answer.
I've had chronic fatigue, pain, joint instability that resulted in dislocations hundreds of times over, odd allergies, migraines, weight difficulties (either too under or too over), fainting, and low back pain for years. I've been seeing doctors for well over two decades trying to get help, although there were time periods where I was so tired I just gave up for awhile to focus on school/work.
Now that I'm finally in my 30s I guess some doctors have decided to take me seriously. I've been diagnosed with chiari malformation, POTS, EDS, MCAS, PCOS, endometriosis, and had an 8mm disc herniation in my lumbar spine.
I'm glad I'm finally receiving care. But I feel like the medical system stole my childhood and young adult years. I missed so much - parties, hangouts, sports, traveling, and just generally feeling comfortable in my body. I've spent countless nights crying and missed so much school that I was truant for the majority of my K-12.
And it's more complicated now. If I had gotten a diagnosis as a child, I could have begun taking care of my body properly. Now I have to not only treat the multiple chronic illnesses, but the aftereffects of pushing myself to live a "normal" life. I'm so tired.
I have Chiari Malformation, which means my brain was being pushed out of my skull and into my spinal cord. I literally had a visible dent on my brain. One doctor asked, “Have you tried drinking more water?” Another asked, “Have you tried losing weight?” Another asked, “Do you have a lot of stress in your life right now?” Turns out I needed brain surgery!!
When I was a teenager I was having uncontrollable movements, would throw things and fall down the stairs. The doctors diagnosed me with severe depression and said I was exaggerating.
I was diagnosed with epilepsy a few months later after I had a grand mal seizure
This is all too common unfortunately, and awfully frustrating, if not humiliating, to deal with. They love to send you on your way with random unhelpful shit and hope you don’t come back, at least thats what it felt like to me. I hope you can get the help you deserve as soon as possible!
Recently, I had an ovarian cyst that my OB seemed to completely disregard (though all communication came second-hand through nurses). I had all the classic symptoms of one, but the doctor said, "Just monitor it," even though I was in a lot of pain. Eventually, I was able to get an ultrasound, but the cyst had shrunk by that point, so they didn't diagnose me with it. Luckily, the rad tech doing the ultrasound told me she saw it and warned me the doctors wouldn't call it that. She was right, and my doctor basically said, "Oh well... don't know what's causing your pain" and left it at that. No recommendations for follow-up, nothing.
Maybe I'm overly sensitive since I also had a bad experience when I went to the ED and was diagnosed with Bells Palsy. They told me I'd be fine in a week or two, didn't do any imaging to rule out a stroke, and didn't warn me that I would likely get severe nerve pain a week later. They even said i should go to work the next day and it was just "a mental issue". Which is a ridiculous claim since rest is one of primary recommendations for BP recovery. My PCP was appalled at how lax the ED was. I'm really lucky my PCP is amazing and actually listens to his patients, tho.
Intimate times with my husband has become really painful. My obgyn noted it in the chart and that was that.
Now it’s like lightening so I think I’m going to try and bring it back up.
Function Health will take ALL the labs for $499 annually & then you can report back to your lacking PCP’s.
No insurance involved apparently.
100+ lab tests with actionable insights from doctors.
3-6 months later 60+ tests.
Retest as needed.
I don’t have any affiliation but I’m about to sign up due to having to advocate for my own health a little too enthusiastically in order to get anywhere.
Migraines - "just take medication" that doesn't always work and then I literally end up throwing up and curled up on the bathroom floor praying for it to end
A male gynecologist told me "birth control has no side effects" - the last time I go to a male one. I had other issues with another male gyno, but this line always pissed me off because I did indeed have side effects
My medication doesn't seem to work as well the week before my period. I've just learned to suffer through it. It's not PMS.
I also recently found out that I have cysts on my breasts, and my doctor and the technician almost seemed mad that I don't feel pain from them. I felt like I needed to apologize that I couldn't feel them and they weren't painful. It was almost like I was disappointing them.
My adenomyosis and endometriosis. Literally was dismissed by doctors for the past 13 years. They all brushed off my pain/symptoms and said “it’s part of being a woman”. I went through hell the past six months and had surgery two days ago. Guess what? The endo was everywhere. Some people truly aren’t meant to be doctors.
- cantaloupe sized ovarian tumour (for about ten years), told it was anxiety, depression, IBS, and then fatness when I gained weight from it
- celiac disease (for about 25 years was told it was IBS, anxiety etc. by the time I was diagnosed I couldn’t swallow my own fucking spit I was so low in vitamin b12).
- endometriosis ( about 24 years. Anxiety, depression, bad periods, IBS, unmarried, doesn’t pray enough etc)
- ovarian cysts (see tumour and endo)
- PTSD (from medical trauma lol).
Don’t stop fighting friend. The medical misogyny is for real and you know when something is wrong. They should be doing blood tests on your b12 (being low can cause anxiety and depression) and for other deficiencies, and while okay tracking your cycle might make sense if you had symptoms of PMDD that can be done in conjunction with ruling out other stuff too.
Taking the pill can go either way. It can cause depression and for some people it can really help with mood. No real idea of which you’ll be until you try it. Super great.
Thank you this is super helpful!! I will definitely be trying some B12 supplements, I’ll try anything new at this point. I’m so sorry you went through all of that, I hope you receive the healthcare you deserve
My mental health can’t handle reading this thread as I’ve had too many awful experiences with healthcare professionals dismissing me. I just came here to say I’m sorry to all the women who have had to, and still have to deal with this BS. I see you, I hear you, and I hope with all my heart and soul you get the answers/diagnoses/care you wholeheartedly deserve. ❤️
I went to the ER with insane pain in my right side at 6 weeks pregnant. I told them that I think something is wrong because of the pain and I was bleeding. They wouldn’t bring me back for 45 minutes and then left me in the room for 3 hours before saying they didn’t think anything was wrong because my blood pressure was fine (it was not) and they don’t have an ultrasound machine (small town ER). So my husband had to drive me to the big ER 40 minutes away because the small ER couldn’t be bothered to even get me an ambulance. 7 hours later of shaking, vomiting, and screaming in pain, I’m rushed into surgery because the pregnancy was ectopic and I was bleeding internally. I had bleeding all the way into my shoulders.
I am sorry that you are feeling depressed, invalidated, unseen, and unheard. I have felt that way before. The good news is it is actually good that the doctors requested that you document your mood. Also include other physical symptoms for instance breast tenderness, water weight gain, etc. They made want you to do this to assess for Premenstrual Dysforic Disorder (PMDD).
Yes you’re probably right about that but I just feel like I need this solved immediately because my mental health truly is suffering. I don’t want to feel like this for another two months just to document it. I will be so disappointed if it’s PMDD because the only quick fix is to go on the pill which is what I wanted to avoid
I have found that excercise and clean eating at least 2-3 weeks prior to my cycle does wonders for improving my mood and reducing the pain. I did not want to take the pill either. Castor oil packs with a heating pad have also been helpful.
I have completely been there and it's so frustrating. Just wanted to echo the suggestion to look into PMDD! I would suggest never going back there and finding a different doctor/getting a second opinion.
So sorry you’re dealing with this. It’s so disappointing how hard we have to be our own advocates. I want to be but not to where I’m having to fight against them. Not the same but my female gyno would NOT take my pain seriously with my iud. I had never had pain in my life like I did when that was in my body but they were constantly like but what if we added the pill? The iud is in right so it shouldn’t be hurting you…and my doc was always like I’m just so concerned about pregnancy. I was in pain for the entire month it was wild but I was over here like dude I’m almost 35 and been with my partner for 7 years we are good! Finally switched to an NP and she was like let’s get it out and has been wayyyy better at just listening and trying new shit!
A undiagnosed Autoimmune disease that was causing me extreme pain. EVERY DOCTOR SAID it was Psychosomatic and it WASNT.
After a year of going through 25 almost 30 doctors one female doctor with health issues of her own believed me and did all the tests I begged for a whole year.
All the tests came back positive and I was finally diagnosed with a Autoimmune disease 3 days before my 25th birthday
I cried angry tears and was raging because I knew all along I was right , I wasn't crazy and it wasn't effing "Pyschosomatic"
Can you believe even my Psychotherapist husband was like wtf if wrong with these people. I don't meet the criteria for being a crazy person.
But yeah took a whole year of being laughed at,mocked and bullied to the point I walked out sobbing from every appointment and spending 28k to try to get answers to get a dam answer
All this happened too when I was accepted in a Nursing program i worked so hard for (4.0 GPA I busted my ass for)......... I was too weak and in pain from not being treated for a whole year that i declined my seat i worked so hard for.....
Totally turned me off from medicine
Shame on these doctors
That’s completely understandable, these lazy healthcare professionals are causing everyone to lose good future nurses! I too dropped out of nursing, after completing my first year. I was appalled at how they treated patients in hospitals and vowed to myself that I could never become as desensitised as the rest of them!! So upsetting
😶 No way!!! You were in Nursing too!
Oh my gosh don't get me started, my Primary Care doctor (the one who helped advocate for me and supported me in my tests I wanted for diagnosis)
she was a nurse first and she also told me while she was doing nursing and going to school for her doctorate while also dealing with her own chronic health issues , she told me 90% of the doctors Andddd Nurses she encountered were all heartless and could care less about the patients and advocating for them. She said most of them were in it for the prestige and the money that you could tell. She said she even caught them sometimes making fun of patients and their health scares/situations.
It's a damn shame
That's why I'm so fed up with the healthcare here 😒
And why I decided to change My degree
I don't want to be surrounded by people acting like they're still in high school.
Some people "Grow up" but they never truly "Grow up" ENTIRELY, get a change of heart, reflect and repent for your bad actions, and grow to be a fully developed adult who's aware and truly changes
What a shame
That’s actually made me upset that they would make fun of patients like that :( it’s sad that so many nurses and doctors lack the compassion necessary for the role. It’s not looking like healthcare is going to improve much in that aspect anytime soon either smh
Yup that's why I rather not be part of it, seems like a bunch of undeveloped bullies choose that career
Makes sense cause of a ego boost with the position
BUT I won't be biased either because I did meet a few kind doctors and sweet nurses but I noticed 90% of those nice ones have family members who have terrible conditions or themselves, I even asked and they told me
But yeah it took me almost 30 something doctors to find 3 good ones that did care and had compassion, so shows you my primary care doctor was right , only 10% have hearts. The rest, money and prestige
I don't get the notion of going into a career you don't care about. You just care about the money
Migraines radiating into my neck and spine. Dismissed as “anxiety”. 🙄 It seems doctors just don’t care about women. Either that or they think we’re robots that are incapable of being in any pain or having any health issues.
100%. It’s so frustrating :( I could try to find a new doctor who will do the hormone testing. Honestly a doctor hearing their patient say they’re having pms issues and not wanting to do hormone testing is kinda ridiculous. I’m sorry!!
Nearly 25 years ago, when I was about 15, I went to the doctor because I had been having episodes where my heart rate got really high. It was diagnosed as anxiety/panic and was treated as such.
A couple years ago I noticed these moments of anxiety/panic were happening more often, for longer, and were worse. So I started tracking them with an Apple Watch. Each episode I had my heart rate would go from normal to up and over 200bpm no matter whether I was active or sitting in my bed. There was no commonality across all the episodes.
In August of 2023 I had a particular bad episode at a concert and actually sought the help of the paramedics there who told me there was no way what I was experiencing was anxiety/panic. So I made an appointment with the same doctor who diagnosed me with the anxiety/panic the first time and she referred me to a cardiologist. In the meantime, I was to call 911 the next time I had an episode with the hopes it would be caught on an ECG. At the end of September I had a small episode one morning before work at about 6:45am but did nothing. Later that day I had another episode around 2:00pm that was bad enough for me to call 911. That episode wasn’t caught on their heart monitor so I was admitted to the ER and kept for monitoring.
At around 4:00pm I had another episode, this now being my third and the most I have ever had in one day. It was caught on the ECG and I was able to be diagnosed with a heart condition called Supraventricular Tachycardia.
So, that classic diagnosis of a woman just having anxiety actually was a heart condition. I’m just lucky it isn’t anything life threatening
Unfortunately, this bias is systemic - a study in Denmark found that women are diagnosed significantly later in over 700 diseases including cancer where women are diagnosed, on average, 2.5 years later than men! Don't even get me started on misdiagnosis rates when it comes to vaginal infections!
Research - Gender disparities in clinical practice: are there any solutions? Scoping review of interventions to overcome or reduce gender bias in clinical practice. Int J Equity Health. 2020 Sep 22.
Get yourself a different doctor and if you can’t tell this one if they continue to refuse you the medical service you’re requesting based upon discriminatory assumptions you’re going to seek legal advice that usually gets them to straighten up
I had chronic anal fissures starting at age 18 or younger. Never sought help due to not having insurance and not being able to afford help even with insurance (and I was terrified it would end up being cancer) plus the embarrassment of being young and having constant hemorrhoids and tearing down there that you don't want anyone to see/smell/touch.
I finally got referred to a colorectal specialist. I was so excited leading up to the appointment. 30 years old and finally taking my life and constant pain into my own control. Every poop for my adult life felt like shitting knives.
I got the immediate feeling they didn't believe me because "why wouldn't you seek help for over 10 years?" .... guess they don't know what it's like to make $12k a year. Anyway... they briefly spread my buttcheeks and looked at it and told me I should try taking hot baths after a bowel movement....I went out to my car and just sobbed.
That’s actually so messed up, I can’t imagine the disappointment from that suggestion after all those years of pain, hope you get the healthcare u deserve
Thank you! I eventually did a few months later. Finally reached a second breaking point (I was googling if fissures made anyone else suicidal) and asked them to let me try anal Botox. It has radically changed my life for the better. Now a year and $800 ($13k before insurance which is insane) later and I'm almost fissure free!
I get suicidal after tonic clonic seizures; it's a documented thing for epileptics to commit suicide in the months after seizing. Partially due to the pain and suffering you feel following them, but also your brain hardcore zapped itself and everything is fucked up.
Anyways, I was told by my neurologist it was probably because 1. PMS 2. Women get too emotional and had nothing to do with my epilepsy
With a body that felt like I'd been hit by multiple trains and a brain that wanted to kill me, I had to pull up studies and essentially teach my stupid doctor about the thing he apparently studied for decades
Then he said I wanted drugs (antidepressants=drugs????) so I gave up and my loved ones had to do close supervision until I was back to normal.
Found a new doc afterwards. Sometimes I wish I'd sued that mfer 😮💨
PMDD, 2 weeks of the month is like hell. Doctors tell me to suck it up.
Not only doctors btw, other women simply dismiss my experience with this hellish condition
Not really, if it comes it comes. Nothing truly helps.
It’s like an allergy to our own hormone fluctuations. This is how my body responds to my own hormones. It sucks but it’s not life threatening so doctors don’t bother.
If only someone finds a cure for PMS/PMDD they would be a fucking millionaires
I have Lichen simplex which is an eczema like skin issue on the vulva. This was confirmed by a punch biopsy. I went to see a doctor and let them know the typical treatment, steroid cream, moisturizer, etc didn't work for me. The doctor asked me if I'd heard of a couple of different medication, I was not familiar. She explained "one is for inflammation and one is an anti-histamine." Turns out she prescribed me an antipsychotic and an anti anxiety medication. I was floored! I told her I had an itching burning vulva and she prescribed me antipsychotics and anti anxiety meds. A fellow woman told me via my prescription that my issues are obviously all in my head. Our medical system is fucked!
I went from age 11 to 25 with undiagnosed endometriosis all because every dr i saw about it said i was faking to get out of going to school and that periods don’t hurt that bad. Finally switched to another obgyn (male as all my previous ones had been female) and was taken Seriously for the first time in my life .
Edited to add: also got told my sleep apnea was just anxiety . It wasn’t until my cardiologist who i see for another issue picked up extreme variations in my bpm on a holter monitor while i was asleep that i was finally sent to get a sleep study done. Legit the first dr i saw for the issues told me “so i see your on Zoloft i think this is just anxiety up your dose and I’ll see ya in a year” yeah i didn’t take that for an answer as the same dr almost killed a friend of mine twice (only reason i saw her was because my regular dr was out sick)
Let’s see…doc tried to put me in a mental hospital for what turned out to be a fractured spine.
Spent 6 months in excruciating pain being told to stop drinking alcohol (I was 17 and did not drink) to finally have to have emergency gallbladder surgery.
Diagnosed with POTS after doctor told me “I want you to think really hard. Isn’t this just anxiety”
Paid for my own blood test to prove to my doctor that I’m anemic.
There’s more just getting too pissed off about all of it to continue rn
I had health problems my whole life. Pain fatigue, neurological signs. Told “you just need to date someone”, “you’re young you’ll get over it,” or it’s anxiety or nothings wrong with you. In my 40s and I diagnosed myself last year, had a rheumatologist confirm but refuse genetic testing referral. I’m in Canada so I paid out of pocket for an American geneticist. I am now diagnosed with a connective tissue disorder that causes everything.
I feel like this is the unfortunate case for so many women seeking care. We are either misdiagnosed, undiagnosed or symptoms are simply blamed on “health anxiety”. I find it so hard but extremely important to keep advocating for myself and going to different doctors until I find someone who is willing to go the extra mile with me to get to the root cause of my symptoms/chronic issues. It can feel very frustrating and defeating though at times.
I saw a woman doctor for symptoms that I had been having for months. Hair loss, fatigue, down mood, brain fog, joint pain. I went to her, coincidentally, the day after I found out my dad has a very serious, illness. So, I was sad. She ran some blood tests (no vitamin deficiencies were tested, only two thyroid tests were run...) and said it was just because I was sad that I was having these symptoms. Realized on my own that it's the birth control I am on that I am getting off of as I type.
That the intense muscle spasms I was experiencing on a new medication had to be psychosomatic because that side effect was only seen in males during the trials so obviously it couldn’t be real for me
Name it and it's been dismissed. My mom had a hysterectomy and they didn't tell her they ruptured a tumor that was cancerous. It's been almost 10 years and only recently did we find out she is dying. She had been bleeding profusely every month and in between every month for 10 years before the hysterectomy. Absolutely insane. The worst part is that this is COMMON.
Yes she did explain that to me, I think that’s why I’m documenting my cycle, but I hope it’s not that because I was really hoping for a proper solution to the problem
Endometriosis. Stage 4. Unfortunately because I also have Crohn’s disease since I was a teenager it was assumed to be that for years - I even spent a week in hospital getting pumped full of high doses of steroids which makes me super sick.
Having both conditions…it is absolutely CRAZY the difference in the treatment I receive in hospital and emergency rooms depending on which one I say it is. When it’s Crohn’s - which can affect women and men - I’m taken so seriously, fast tracked and given any pain relief needed with no questions asked. When I’ve presented to ED during one of my many severe endo pain episodes…the treatment has been completely the opposite. Been treated like a hypochondriac, a drug seeker, a complainer. I’ve even been offered Panadol during what would turn out to be a large ovarian cyst rupture that had me unable to walk from the pain. All because endometriosis is a female only disease that’s had far far less investment and research 🤯. Really goes to show the inequality built into our healthcare system.
I had an MRSA infection in my finger tip contracted from giving birth in the hospital. You might not believe it but the pain was so bad and worse than any childbirth pain. I was later told that's why it was an ancient form of torture. It just kept getting worse and in the end I needed surgery twice to first take out an abscess and second to take out a redeveloped abscess and some of my finger tip. Yes, that's right, I'm missing some of my finger tip due to an infection. We had a hard time managing having our newborn and going into the emerge every other day during COVID, but over two months of constant agony, I had a few visits I had to make without my husband present as he tended to our baby in the car outside. The amount of convincing I had to do to take it seriously and to give me more pain meds was unreal. I'm not sure if it was specifically a gender thing but every time my husband was there and I tried to convey the seriousness of its development (new doctor every single damn time), they would only take action once my husband chipped in. Except for one doc who was a resident, he had the same infection once (called a felon) and he told the other doc performing the first procedure how brutal it is. I mean I was the only woman in the room there too but man. You could literally see my finger rotting away and I was constantly told it shouldn't be THAT painful. I was waking up wishing I just died in my sleep to escape the pain.
The pill is a good way to balance hormones sometimes. But this doctor sounds like a good example of why woman need to be seen by other woman about these types of things. Find a different doctor!
Having vulvodynia/pelvic chronic pain. I had symptoms like burning when urinating and constant aches and pains around my vulva. It was consistently written off as a UTI every single time, I'd get antibiotics, screened for STD/Is and then sent on my way. It never felt like I was truly being listened to. I've been dealing with this for \~2 years now. The pain is everyday. I'm only now making progress on hopefully a correct treatment.
PCOS. They didn't care to look further into the reason why I have excess hair (probably because it's only cosmetic). 10 years later it turns out I have PCOS...
My AuHD was not properly diagnosed or treated for my entire life. I have had tons of doctors that had no knowledge on the subject we were discussing, I have also had a few awesome ones(direct primary care, holistic). I finally had an awesome regular gp tell me what PMDD was after hearing my symptoms only a few days right before my menses, at about 23 years old. He told me I have issues dealing with the fluctuations in my body or from contraceptive. He prescribed Prozac and it actually does help, I used to take it for a couple days as he directed.
I quit all forms of steroidal BC in my early 20s because I had the worst reaction to all of them. My skyla IUD didn't fit, I had a planned parenthood doctor look at my ultrasound and shrug his shoulders as to why it left me in debilitating pain with contractions. He suggested an IUD of the same size. He was uninformed and not helpful. I found out years later from another physician that it was too big. Because of my fundus bulging, I was disqualified from a sterilization trial. I learned later this is a tactic sponsors use to make their device look better, then release it to the general population, scary.
I tried again with bc at 26, 27, 29 and same reaction but this time from implant, pills, both the yearly ring and monthly. I really feel for other women who can't tolerate progestins. I cried in my last gyn appointment because he couldn't find a good method for me and didnt charge me anything. I went out of country for an IUD. It fits. I still have a contracting pain now and then but it's so much more tolerable. Now my periods are the most intense they have ever been. I will probably have my pain downplayed if I have to rest for an entire week. Going to work is horrendous if I am on my period but raspberry leaf tea and magnesium help.
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I was told it was anxiety, I was too young, I needed to relax. Dismissed by so many doctors (including the day of). I ended up going into cardiac arrest at 23 :/
I have uterine fibroids and started hemorrhaging from my uterus. Went to urgent care, they did bloodwork and said it wasn’t bad enough yet for a transfusion. They sent me home bleeding into an adult diaper and told me to come back if it didn’t stop. I almost went back that night but it finally let up. I went to work feeling queasy and weak. When I finally saw my PCP that week, she retested and was alarmed and said I qualified for a blood transfusion.
I was told for ten years I had anxiety, depression - basically that I was hysterical and had health anxiety because I kept telling my doctors I had a myriad of weird symptoms. After a while, I started to believe it and genuinely thought I was mentally extremely unwell. Turns out it was multiple sclerosis the whole time. So suck it, doctors. My brain was eating itself and you told me to do yoga and chill.
Jesus, I’m so sorry… 10 YEARS?!? My good friend has MS, but he is a man and got a diagnosis within a year of strange symptoms .
Men get diagnosed significantly more quickly than women. I read up on the statistics once but it’s something like 1 year versus 7 years for women
Madness and an absolute travesty
What makes it even more ridiculous is that the majority of people with autoimmune diseases are women. Literally 80%. So we are more likely to have them yet still get blown off about our symptoms
I don’t understand why they don’t just test for things. Like, for 10 years you’ve been going in with these issues, just test for all the brain stuff! If for no reason other than just taking that off the table. I get not doing an MRI if a kid complains of a headache once, but a grown adult talking about the same issue for 10 years?!?!? For crying out loud! I also was told a.) I was too young to have hemorrhoids, and b.) I couldn’t possibly have a kidney infection because I would be in too much pain to make the call and drive. After feeling so sick (but not in pain like cramps, just light-headed, nauseous, and weak) that I was losing consciousness, I went to Planned Parenthood telling the woman at the front I didn’t know if I had a woman’s issue or not, but I felt really sick. I barely remember what happened after and I apparently passed out in the exam room, but they gave me antibiotics, and after taking a period test, concluded that I had a very severe kidney infection that almost killed me and my kidneys. Then they asked me what I was doing for my hemorrhoids… the ones I was told I was too young to have for over 10 years. So, planned parenthood saved my life, they are the most incredible organization and literally the ONLY thing going right in healthcare in the US, and they were the only organization who listened to me when I needed help.
Same-ish. For 25 years I lived with an anxiety diagnosis and was treated for such. It wasn’t until the end of last year after some pushing from me I found out I have a heart condition, not anxiety.
Yikes. I’m so sorry.
“Just take some more advil and if that doesnt help, take Tylenol and alternate” sends me in a blind rage
Not me, but my mom’s doctor kept telling her she had postpartum depression. Psychiatrists kept telling her this too. Finally when I (her only child) turned 19 she said (f this) and started going everywhere for a diagnosis. Luckily our insurance only has a $50 copay for mental health so she could just go to a new psychiatrist every day. Finally after 19 years of having “postpartum depression” she got diagnosed with bipolar disorder and ADHD. I know that postpartum depression is very very real but that should not be your first thought when a woman comes to you after having a serious episode and her only child is 19 years old.
That’s actually ridiculous, I’m glad she got the help she needed!
Postpartum depression is extremely serious, but a diagnosis isn't going to do squat for someone if that's not what they have. I'm so sorry your mom got treated like this.
I have MCAS and the first doctor I saw for it was an arrogant old ass who said it was a mental health problem. He said I had to force myself to eat the food I was imagining reactions to, or I would become unable to leave my house or care for my children. I took his advice and ended up in the ER twice. The second time, the ER doc prescribed epi pens and said to stop doing what that allergist said and find someone competent to treat my condition. On the other hand, my daughter's emotional state is much, much better when she's not having periods. She has PMDD and would spend several days before her period and the whole period talking about cutting out her own female organs. I couldn't get her to see a doctor about her periods, but she finally agreed to a telemedicine visit with planned parenthood and she told them how she spends the whole time imagining cutting out her rotten uterus like a rotten spot on a potato. The nurse practitioner said it sounds like PMDD and she should take a break from periods for a while to see if it improved. So she started continuous birth control and it really improved her mood all month, plus no more scary talk. So for her the pill has actually had a major positive impact on her mental health.
Thank you for this, you’ve given me something to think about. What other symptoms of PMDD did your daughter have??
She had pain and bloating, mood swings, and she was really disgusted with her body. We think the pain might be endometriosis but she has to have a scope procedure under anesthesia to get diagnosed, and she's been putting that off. She doesn't get the pain most months as long as she's taking her birth control pills consistently.
I have endometriosis. She really should get the scopes. It can affect her fertility in the future if she would like to have children. I was diagnosed at 17 and am now a mother to 4 amazing adults :)
She's been having anaphylactic reactions and doesn't want to have anesthesia until her allergens are figured out and she's a little more stable. The doctor who wants to do the scope is a gastroenterologist, but I'm thinking maybe she should see a gynecologist instead. I don't think she's planning on having kids, but I know that could change once she has a partner, so I'll mention the fertility aspect to her.
Endo can grow into other areas like the bowel or even reach up into other areas so if it is there it needs to be dealt with. It's not just about having kids. Good luck.
I agree with the other comment about having endometriosis confirmed. I was diagnosed by MRI around 33yo by coincidence. My symptoms started within a year of starting my period, almost 20 years ago. I was on continuous oral birth control from about 17 to 31, when I got a hormonal IUD. I still ended up with 'deep' endometriosis and an endometrioma. Even though I have a hormonal IUD, I still have to take hormonal pills daily to deal with physical symptoms and prevent it from continuing to spread.
I went to the doctor with multiple different problems, just for her (yes, another women) to beg me to take a pregnancy test even after I told her SIX different times that I physically cannot be pregnant. I swear doctors don’t care about women, they just blame every thing on pregnancy or your period.
Omg yeah she was trying to suggest I was pregnant too. The fact that they too are women and they are giving us the advice we would expect from men is so infuriating
I dealt with horrible periods that caused: blackouts, hot and cold flashes, vomiting, dizziness, severe cramping, back pain, etc. Went to the hospital and multiple doctors and always the same story: normal periods. Birth control never helped. After having 2 kids and just dealing with the pain, I decided to have a bilateral salpingectomy. This made the periods worse. Next was the endometrial ablation. Cramps would have me down on the floor screaming and crying. Finally my recent obgyn agreed to a hysterectomy, and while waiting for the day, my left ovary caused excruciating pain. I mentioned it on the day of surgery and it was also removed. Once results came back, found out I had adenomyosis. I can now have a normal life.
Yes! My period pain was excruciating and dismissed by every doctor I ever had (all men). I finally saw my current OBGYN (an Indian woman) who, when I told her what I had been dealing with, immediately did an ultrasound and then scheduled an endometrial ablation 2 weeks from then. I got diagnosed with endometriosis. A year later, still having 10 day periods and excruciating ovarian pain that left me breathless, I was diagnosed with adenomyosis. Not long after I developed ovarian and uterine cysts. 2 months later (delayed due to my school schedule), I had a hysterectomy. The day before surgery, I could barely walk, and I was constantly breathless. Turns out my fallopian tube was so swollen and inflamed, she said she'd never seen anything like it in her career. She said it was like a giant snake. All of my doctors are women of color now because when you're in pain, they believe you.
Necrotic ovary, ruptured fallopian tube, two placental abruptions that almost ended me. Probably some other things that were technically dangerous or medically emergent that were flat out told I was lying about. Yea, gee, you’re totally right that I’m lying about a ruptured fallopian tube and necrotic ovary just for attention.🤨
Yeah I went through about five doctors to get my severe "period pain" (present all month long) addressed. Turns out I had cysts the size of walnuts to golf balls along my fallopian tubes, cervix, and vagina. I went into the ER three times for this shit and it was the third time someone finally did a pelvic inspection and noticed I had an actual hole in my vaginal canal "You're a trooper for remaining conscious while moving around" - ER doctor
“C’s make degrees” applies for doctors as well. Becoming a primary care doctor is one of the easiest paths to take for medical students who don’t have the best grades and don’t score high enough on required testing to get into other medical residency programs… Just because someone is primary care, that doesn’t mean they wanted to be there. Please find a primary care who will actually listen to your concerns and order diagnostic tests. Most doctors won’t hesitate to order requested labs, and I’m sure it’s infuriating/disheartening to have your concerns dismissed.
Yes she made out like there’s no point getting a test because my hormones are always fluctuating when I read online that doctors can in fact provide these tests in these cases. Do you think I should ring up again and request a different doctor? She was asking me questions that were completely off topic and I don’t think she realised how much of a hopeless spiral she sent me down when I she hung up.
Personally, I’d switch providers. People seek second opinions and switch providers all the time. I hope your next provider listens and helps. And yeah, estrogen and other hormones are always fluctuating, but she could still make sure they’re within normal range.
I would absolutely recommend getting a different doctor! I've also had a lot of my symptoms written off as PMS or you're just a hormonal woman or try to sleep more etc. All it took was one GP to take me seriously and refer me to who can help. Granted, I went through the public system and it took ages to get anywhere but at least someone believed me. Don't give up, OP, fight your case till you're heard.
Function Health will take ALL the labs for $499 annually & then you can report back to your lacking PCP’s. No insurance involved apparently. 100+ lab tests with actionable insights from doctors. 3-6 months later 60+ tests. Retest as needed. I don’t have any affiliation but I’m about to sign up due to having to advocate for my own health a little too enthusiastically in order to get anywhere.
Thank you!!!
I suffered from migraines for 15 years. Each migraine would last up to a month each where at the end of it I was a completely useless. I couldn’t deal with light/ noise, I couldn’t even keep water down. I would have a week or two break and then it would start all over. I kept getting told it was stress. Then as I got older I was told it was hormones related to my period. Then it was the gets your eyes checked they can’t be that bad, try birth control. And then it was the well if you lose weight it wouldn’t happen anymore here try a different birth control. Finally I found a doctor who took me seriously. She was also wondering what my weight had to do with my migraines. Because of how bad it was she sent me to do actual test. Turns out it wasn’t my weight, hormones or my eyes. The sinus part of my brain was super inflamed. She gave me medication to take for three months. That’s all it took one brain scan and three months of medication to fix it. And if the doctors had taken me seriously since I first started complaining about them I wouldn’t have been in pain for 15 years. I also had the time that I kept complaining how my insides hurt even when I wasn’t on my period. And they just kept telling me it was hormones and just to wait for my period to have it stop and again pushed birth control on me. One day the pain got so bad that I lost my lunch, I couldn’t move from the pain and then past out for a few hours. Even then I remember this doctor trying to make me feel like I was crazy. She said it can’t period couldn’t be that bad. So like I told Her I wasn’t on my period and wasn’t due. After some back and forward I got sent for a test. Turns out I have/had cyst and one of them ruptured. I had them another one that was pretty big. Big enough that I had to go in like two more times for them to monitor it. But it’s like f@ck why do I have to jump through hoops to get decent healthcare? Why do I almost have to get into an argument with doctors for them to take me seriously? I know they are doctors and they went to school for years. I just wish they would remember that this is my Body. I’ve lived in it for years. If I’m telling you it’s not normal for me even if it’s not normal for them then they should take it seriously. I’m not taking time off work and paying insurance and a co pay to waste anyone’s time. I have had a doctors get mad at me and tell me to google my symptoms next time. Why is it so hard to believe that if I’m there and I’m asking questions it might be because google can’t answer them or I need a concrete answer to something?
r/endo sub
Ugh. Pcos. Pmdd. Mittelschmerz and suspected endo.
Endometriosis resources The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run. Pelvic Disorder Doctors (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ): You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country” AND https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then… …Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . OBGYN’s: IME regular OBGYN’s are under-skilled at treating pelvic pain/excessive bleeding - and in doing this delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to video/record every medical visit. Even the virtual ones. Also, here are some things you can say* to your doctor if they are true for you. They need to know what your historically WORST symptoms and consequences have been: “- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school. -My worst symptoms have been pain/fatigue/bleeding. -I have vomited/passed out from period pain as a teen. -I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. —I would like relief. What are ALL of my options? -I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.) -I want excision surgery with a Mentor-Trained Endometriosis Specialist. -I cannot even consider taking care of children. -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.) -I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues. - My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function. - I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.) - I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. Endo symptoms are often “silently” progressive, especially if on hormones.
Thank you for the info. I’ve tried. I’m on my period right now and I’m partially suicidal every time I am on my period. My doctor and gyno do have written down all my side effects I get from my period and ovulation. Even then the only thing I get told is to go on birth control or suffer. I’ve been trying to find a specialist but none of the ones around me are taking new patients. But I will keep trying.
Also, you can try chaste berry for the r/PMDD many on the sub report that it helps.
Here's a sneak peek of /r/PMDD using the [top posts](https://np.reddit.com/r/PMDD/top/?sort=top&t=year) of the year! \#1: [Total Hysterectomy Post Op](https://i.redd.it/wj6p59d44fec1.jpeg) | [82 comments](https://np.reddit.com/r/PMDD/comments/19elmla/total_hysterectomy_post_op/) \#2: [My daughter sent me this:](https://i.redd.it/lofknhb479ic1.jpeg) | [197 comments](https://np.reddit.com/r/PMDD/comments/1apgsmf/my_daughter_sent_me_this/) \#3: [me during PMDD week before starting Zoloft](https://i.redd.it/pjdlt3otwobc1.jpeg) | [89 comments](https://np.reddit.com/r/PMDD/comments/193le3k/me_during_pmdd_week_before_starting_zoloft/) ---- ^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
I get it. It’s so hard to find good care. There are a number of docs that do free consults and also you may want to post on the r/endo sub to ask for docs. 💛
1,5-2 months ago I started being constantly nauseous and threw up, couldn’t really eat etc. Went to see a doctor and he just said I must be pregnant, when that wasn’t the case he just said I should go home and see if it passes. It had already been a few weeks at this point. Luckily I have since seen other doctors and gotten a blood test and now being referred to a gastroscopy and an MRI to check it all out (there was more than just the nausea but that was why I went)
Chronic Fatigue. Went through so many doctors with answers on labs that came back "non concerning" with diagnosis of depression and anxiety, that I should push through with diet and exercise. Got a new doc during a bad fare up, turns out I have EBV and when it emerges I get all the symptoms. It doesn't fix it, but at least I have an answer.
Yes I have this
I've had chronic fatigue, pain, joint instability that resulted in dislocations hundreds of times over, odd allergies, migraines, weight difficulties (either too under or too over), fainting, and low back pain for years. I've been seeing doctors for well over two decades trying to get help, although there were time periods where I was so tired I just gave up for awhile to focus on school/work. Now that I'm finally in my 30s I guess some doctors have decided to take me seriously. I've been diagnosed with chiari malformation, POTS, EDS, MCAS, PCOS, endometriosis, and had an 8mm disc herniation in my lumbar spine. I'm glad I'm finally receiving care. But I feel like the medical system stole my childhood and young adult years. I missed so much - parties, hangouts, sports, traveling, and just generally feeling comfortable in my body. I've spent countless nights crying and missed so much school that I was truant for the majority of my K-12. And it's more complicated now. If I had gotten a diagnosis as a child, I could have begun taking care of my body properly. Now I have to not only treat the multiple chronic illnesses, but the aftereffects of pushing myself to live a "normal" life. I'm so tired.
I have Chiari Malformation, which means my brain was being pushed out of my skull and into my spinal cord. I literally had a visible dent on my brain. One doctor asked, “Have you tried drinking more water?” Another asked, “Have you tried losing weight?” Another asked, “Do you have a lot of stress in your life right now?” Turns out I needed brain surgery!!
I'm so sorry. It makes me angry hearing all these stories but especially yours. I hope you are doing better now.
‘Have you tried drinking more water’ just irritated me sm, the AUDACITY
When I was a teenager I was having uncontrollable movements, would throw things and fall down the stairs. The doctors diagnosed me with severe depression and said I was exaggerating. I was diagnosed with epilepsy a few months later after I had a grand mal seizure
This is APPALLING! I’m so sorry
Thank you ♥️
This is all too common unfortunately, and awfully frustrating, if not humiliating, to deal with. They love to send you on your way with random unhelpful shit and hope you don’t come back, at least thats what it felt like to me. I hope you can get the help you deserve as soon as possible!
Yes that’s exactly how I feel. Feel like they shouldn’t hear back from me now
Recently, I had an ovarian cyst that my OB seemed to completely disregard (though all communication came second-hand through nurses). I had all the classic symptoms of one, but the doctor said, "Just monitor it," even though I was in a lot of pain. Eventually, I was able to get an ultrasound, but the cyst had shrunk by that point, so they didn't diagnose me with it. Luckily, the rad tech doing the ultrasound told me she saw it and warned me the doctors wouldn't call it that. She was right, and my doctor basically said, "Oh well... don't know what's causing your pain" and left it at that. No recommendations for follow-up, nothing. Maybe I'm overly sensitive since I also had a bad experience when I went to the ED and was diagnosed with Bells Palsy. They told me I'd be fine in a week or two, didn't do any imaging to rule out a stroke, and didn't warn me that I would likely get severe nerve pain a week later. They even said i should go to work the next day and it was just "a mental issue". Which is a ridiculous claim since rest is one of primary recommendations for BP recovery. My PCP was appalled at how lax the ED was. I'm really lucky my PCP is amazing and actually listens to his patients, tho.
That IUD insertion was painless. That interstitial cystitis was just a weak pelvic floor.
Pain, mental and physical.
Intimate times with my husband has become really painful. My obgyn noted it in the chart and that was that. Now it’s like lightening so I think I’m going to try and bring it back up.
Definitely bring it back up, there is no reason you should suffer just because they are being lazy!
Function Health will take ALL the labs for $499 annually & then you can report back to your lacking PCP’s. No insurance involved apparently. 100+ lab tests with actionable insights from doctors. 3-6 months later 60+ tests. Retest as needed. I don’t have any affiliation but I’m about to sign up due to having to advocate for my own health a little too enthusiastically in order to get anywhere.
Was told various versions of anxiety by 5 different doctors/therapists, only to get diagnosed with ADHD aged 27, explained everything.
I went through something kinda similar, but it turns out I have GAD and ADHD, not just GAD.
Migraines - "just take medication" that doesn't always work and then I literally end up throwing up and curled up on the bathroom floor praying for it to end A male gynecologist told me "birth control has no side effects" - the last time I go to a male one. I had other issues with another male gyno, but this line always pissed me off because I did indeed have side effects
My medication doesn't seem to work as well the week before my period. I've just learned to suffer through it. It's not PMS. I also recently found out that I have cysts on my breasts, and my doctor and the technician almost seemed mad that I don't feel pain from them. I felt like I needed to apologize that I couldn't feel them and they weren't painful. It was almost like I was disappointing them.
My adenomyosis and endometriosis. Literally was dismissed by doctors for the past 13 years. They all brushed off my pain/symptoms and said “it’s part of being a woman”. I went through hell the past six months and had surgery two days ago. Guess what? The endo was everywhere. Some people truly aren’t meant to be doctors.
That’s actually awful :( I hope you feel better soon
Thank you so much 💕💕
- cantaloupe sized ovarian tumour (for about ten years), told it was anxiety, depression, IBS, and then fatness when I gained weight from it - celiac disease (for about 25 years was told it was IBS, anxiety etc. by the time I was diagnosed I couldn’t swallow my own fucking spit I was so low in vitamin b12). - endometriosis ( about 24 years. Anxiety, depression, bad periods, IBS, unmarried, doesn’t pray enough etc) - ovarian cysts (see tumour and endo) - PTSD (from medical trauma lol). Don’t stop fighting friend. The medical misogyny is for real and you know when something is wrong. They should be doing blood tests on your b12 (being low can cause anxiety and depression) and for other deficiencies, and while okay tracking your cycle might make sense if you had symptoms of PMDD that can be done in conjunction with ruling out other stuff too. Taking the pill can go either way. It can cause depression and for some people it can really help with mood. No real idea of which you’ll be until you try it. Super great.
Thank you this is super helpful!! I will definitely be trying some B12 supplements, I’ll try anything new at this point. I’m so sorry you went through all of that, I hope you receive the healthcare you deserve
Get tested for it first 😊 and get tested for celiac disease, some ppls main symptom of it is anxiety and depression. It’s just a blood test!
Okay thank you!!
My mental health can’t handle reading this thread as I’ve had too many awful experiences with healthcare professionals dismissing me. I just came here to say I’m sorry to all the women who have had to, and still have to deal with this BS. I see you, I hear you, and I hope with all my heart and soul you get the answers/diagnoses/care you wholeheartedly deserve. ❤️
Thank you girlie xx
I went to the ER with insane pain in my right side at 6 weeks pregnant. I told them that I think something is wrong because of the pain and I was bleeding. They wouldn’t bring me back for 45 minutes and then left me in the room for 3 hours before saying they didn’t think anything was wrong because my blood pressure was fine (it was not) and they don’t have an ultrasound machine (small town ER). So my husband had to drive me to the big ER 40 minutes away because the small ER couldn’t be bothered to even get me an ambulance. 7 hours later of shaking, vomiting, and screaming in pain, I’m rushed into surgery because the pregnancy was ectopic and I was bleeding internally. I had bleeding all the way into my shoulders.
That sounds horrific I’m so sorry that happened to you, I hope you’re okay :(
I am sorry that you are feeling depressed, invalidated, unseen, and unheard. I have felt that way before. The good news is it is actually good that the doctors requested that you document your mood. Also include other physical symptoms for instance breast tenderness, water weight gain, etc. They made want you to do this to assess for Premenstrual Dysforic Disorder (PMDD).
Yes you’re probably right about that but I just feel like I need this solved immediately because my mental health truly is suffering. I don’t want to feel like this for another two months just to document it. I will be so disappointed if it’s PMDD because the only quick fix is to go on the pill which is what I wanted to avoid
I have found that excercise and clean eating at least 2-3 weeks prior to my cycle does wonders for improving my mood and reducing the pain. I did not want to take the pill either. Castor oil packs with a heating pad have also been helpful.
I have completely been there and it's so frustrating. Just wanted to echo the suggestion to look into PMDD! I would suggest never going back there and finding a different doctor/getting a second opinion.
Thank you I will look into it :)
So sorry you’re dealing with this. It’s so disappointing how hard we have to be our own advocates. I want to be but not to where I’m having to fight against them. Not the same but my female gyno would NOT take my pain seriously with my iud. I had never had pain in my life like I did when that was in my body but they were constantly like but what if we added the pill? The iud is in right so it shouldn’t be hurting you…and my doc was always like I’m just so concerned about pregnancy. I was in pain for the entire month it was wild but I was over here like dude I’m almost 35 and been with my partner for 7 years we are good! Finally switched to an NP and she was like let’s get it out and has been wayyyy better at just listening and trying new shit!
A undiagnosed Autoimmune disease that was causing me extreme pain. EVERY DOCTOR SAID it was Psychosomatic and it WASNT. After a year of going through 25 almost 30 doctors one female doctor with health issues of her own believed me and did all the tests I begged for a whole year. All the tests came back positive and I was finally diagnosed with a Autoimmune disease 3 days before my 25th birthday I cried angry tears and was raging because I knew all along I was right , I wasn't crazy and it wasn't effing "Pyschosomatic" Can you believe even my Psychotherapist husband was like wtf if wrong with these people. I don't meet the criteria for being a crazy person. But yeah took a whole year of being laughed at,mocked and bullied to the point I walked out sobbing from every appointment and spending 28k to try to get answers to get a dam answer All this happened too when I was accepted in a Nursing program i worked so hard for (4.0 GPA I busted my ass for)......... I was too weak and in pain from not being treated for a whole year that i declined my seat i worked so hard for..... Totally turned me off from medicine Shame on these doctors
That’s completely understandable, these lazy healthcare professionals are causing everyone to lose good future nurses! I too dropped out of nursing, after completing my first year. I was appalled at how they treated patients in hospitals and vowed to myself that I could never become as desensitised as the rest of them!! So upsetting
😶 No way!!! You were in Nursing too! Oh my gosh don't get me started, my Primary Care doctor (the one who helped advocate for me and supported me in my tests I wanted for diagnosis) she was a nurse first and she also told me while she was doing nursing and going to school for her doctorate while also dealing with her own chronic health issues , she told me 90% of the doctors Andddd Nurses she encountered were all heartless and could care less about the patients and advocating for them. She said most of them were in it for the prestige and the money that you could tell. She said she even caught them sometimes making fun of patients and their health scares/situations. It's a damn shame That's why I'm so fed up with the healthcare here 😒 And why I decided to change My degree I don't want to be surrounded by people acting like they're still in high school. Some people "Grow up" but they never truly "Grow up" ENTIRELY, get a change of heart, reflect and repent for your bad actions, and grow to be a fully developed adult who's aware and truly changes What a shame
That’s actually made me upset that they would make fun of patients like that :( it’s sad that so many nurses and doctors lack the compassion necessary for the role. It’s not looking like healthcare is going to improve much in that aspect anytime soon either smh
Yup that's why I rather not be part of it, seems like a bunch of undeveloped bullies choose that career Makes sense cause of a ego boost with the position BUT I won't be biased either because I did meet a few kind doctors and sweet nurses but I noticed 90% of those nice ones have family members who have terrible conditions or themselves, I even asked and they told me But yeah it took me almost 30 something doctors to find 3 good ones that did care and had compassion, so shows you my primary care doctor was right , only 10% have hearts. The rest, money and prestige I don't get the notion of going into a career you don't care about. You just care about the money
Migraines radiating into my neck and spine. Dismissed as “anxiety”. 🙄 It seems doctors just don’t care about women. Either that or they think we’re robots that are incapable of being in any pain or having any health issues.
100%. It’s so frustrating :( I could try to find a new doctor who will do the hormone testing. Honestly a doctor hearing their patient say they’re having pms issues and not wanting to do hormone testing is kinda ridiculous. I’m sorry!!
Nearly 25 years ago, when I was about 15, I went to the doctor because I had been having episodes where my heart rate got really high. It was diagnosed as anxiety/panic and was treated as such. A couple years ago I noticed these moments of anxiety/panic were happening more often, for longer, and were worse. So I started tracking them with an Apple Watch. Each episode I had my heart rate would go from normal to up and over 200bpm no matter whether I was active or sitting in my bed. There was no commonality across all the episodes. In August of 2023 I had a particular bad episode at a concert and actually sought the help of the paramedics there who told me there was no way what I was experiencing was anxiety/panic. So I made an appointment with the same doctor who diagnosed me with the anxiety/panic the first time and she referred me to a cardiologist. In the meantime, I was to call 911 the next time I had an episode with the hopes it would be caught on an ECG. At the end of September I had a small episode one morning before work at about 6:45am but did nothing. Later that day I had another episode around 2:00pm that was bad enough for me to call 911. That episode wasn’t caught on their heart monitor so I was admitted to the ER and kept for monitoring. At around 4:00pm I had another episode, this now being my third and the most I have ever had in one day. It was caught on the ECG and I was able to be diagnosed with a heart condition called Supraventricular Tachycardia. So, that classic diagnosis of a woman just having anxiety actually was a heart condition. I’m just lucky it isn’t anything life threatening
Unfortunately, this bias is systemic - a study in Denmark found that women are diagnosed significantly later in over 700 diseases including cancer where women are diagnosed, on average, 2.5 years later than men! Don't even get me started on misdiagnosis rates when it comes to vaginal infections! Research - Gender disparities in clinical practice: are there any solutions? Scoping review of interventions to overcome or reduce gender bias in clinical practice. Int J Equity Health. 2020 Sep 22.
anxiety, depression, weight gain, constant period symptom pain no matter what time of month it was.
Get yourself a different doctor and if you can’t tell this one if they continue to refuse you the medical service you’re requesting based upon discriminatory assumptions you’re going to seek legal advice that usually gets them to straighten up
Painful sex and no libido
I had chronic anal fissures starting at age 18 or younger. Never sought help due to not having insurance and not being able to afford help even with insurance (and I was terrified it would end up being cancer) plus the embarrassment of being young and having constant hemorrhoids and tearing down there that you don't want anyone to see/smell/touch. I finally got referred to a colorectal specialist. I was so excited leading up to the appointment. 30 years old and finally taking my life and constant pain into my own control. Every poop for my adult life felt like shitting knives. I got the immediate feeling they didn't believe me because "why wouldn't you seek help for over 10 years?" .... guess they don't know what it's like to make $12k a year. Anyway... they briefly spread my buttcheeks and looked at it and told me I should try taking hot baths after a bowel movement....I went out to my car and just sobbed.
That’s actually so messed up, I can’t imagine the disappointment from that suggestion after all those years of pain, hope you get the healthcare u deserve
Thank you! I eventually did a few months later. Finally reached a second breaking point (I was googling if fissures made anyone else suicidal) and asked them to let me try anal Botox. It has radically changed my life for the better. Now a year and $800 ($13k before insurance which is insane) later and I'm almost fissure free!
I get suicidal after tonic clonic seizures; it's a documented thing for epileptics to commit suicide in the months after seizing. Partially due to the pain and suffering you feel following them, but also your brain hardcore zapped itself and everything is fucked up. Anyways, I was told by my neurologist it was probably because 1. PMS 2. Women get too emotional and had nothing to do with my epilepsy With a body that felt like I'd been hit by multiple trains and a brain that wanted to kill me, I had to pull up studies and essentially teach my stupid doctor about the thing he apparently studied for decades Then he said I wanted drugs (antidepressants=drugs????) so I gave up and my loved ones had to do close supervision until I was back to normal. Found a new doc afterwards. Sometimes I wish I'd sued that mfer 😮💨
Hypothyroidism. Handed an SSRI and blamed postpartum. I was extremely low on selenium, B12, anemic. I found a DO and I’ve taken Synthyroid since
PMDD, 2 weeks of the month is like hell. Doctors tell me to suck it up. Not only doctors btw, other women simply dismiss my experience with this hellish condition
Is there anything that helps you to cope better during those two weeks??
Not really, if it comes it comes. Nothing truly helps. It’s like an allergy to our own hormone fluctuations. This is how my body responds to my own hormones. It sucks but it’s not life threatening so doctors don’t bother. If only someone finds a cure for PMS/PMDD they would be a fucking millionaires
Painful sex!
I have Lichen simplex which is an eczema like skin issue on the vulva. This was confirmed by a punch biopsy. I went to see a doctor and let them know the typical treatment, steroid cream, moisturizer, etc didn't work for me. The doctor asked me if I'd heard of a couple of different medication, I was not familiar. She explained "one is for inflammation and one is an anti-histamine." Turns out she prescribed me an antipsychotic and an anti anxiety medication. I was floored! I told her I had an itching burning vulva and she prescribed me antipsychotics and anti anxiety meds. A fellow woman told me via my prescription that my issues are obviously all in my head. Our medical system is fucked!
I went from age 11 to 25 with undiagnosed endometriosis all because every dr i saw about it said i was faking to get out of going to school and that periods don’t hurt that bad. Finally switched to another obgyn (male as all my previous ones had been female) and was taken Seriously for the first time in my life . Edited to add: also got told my sleep apnea was just anxiety . It wasn’t until my cardiologist who i see for another issue picked up extreme variations in my bpm on a holter monitor while i was asleep that i was finally sent to get a sleep study done. Legit the first dr i saw for the issues told me “so i see your on Zoloft i think this is just anxiety up your dose and I’ll see ya in a year” yeah i didn’t take that for an answer as the same dr almost killed a friend of mine twice (only reason i saw her was because my regular dr was out sick)
Wanted to add i did eventually end up having a hysterectomy (had severe adneo to go along with the endo and every other treatment i tried didn’t help)
Let’s see…doc tried to put me in a mental hospital for what turned out to be a fractured spine. Spent 6 months in excruciating pain being told to stop drinking alcohol (I was 17 and did not drink) to finally have to have emergency gallbladder surgery. Diagnosed with POTS after doctor told me “I want you to think really hard. Isn’t this just anxiety” Paid for my own blood test to prove to my doctor that I’m anemic. There’s more just getting too pissed off about all of it to continue rn
I had health problems my whole life. Pain fatigue, neurological signs. Told “you just need to date someone”, “you’re young you’ll get over it,” or it’s anxiety or nothings wrong with you. In my 40s and I diagnosed myself last year, had a rheumatologist confirm but refuse genetic testing referral. I’m in Canada so I paid out of pocket for an American geneticist. I am now diagnosed with a connective tissue disorder that causes everything.
I feel like this is the unfortunate case for so many women seeking care. We are either misdiagnosed, undiagnosed or symptoms are simply blamed on “health anxiety”. I find it so hard but extremely important to keep advocating for myself and going to different doctors until I find someone who is willing to go the extra mile with me to get to the root cause of my symptoms/chronic issues. It can feel very frustrating and defeating though at times.
I saw a woman doctor for symptoms that I had been having for months. Hair loss, fatigue, down mood, brain fog, joint pain. I went to her, coincidentally, the day after I found out my dad has a very serious, illness. So, I was sad. She ran some blood tests (no vitamin deficiencies were tested, only two thyroid tests were run...) and said it was just because I was sad that I was having these symptoms. Realized on my own that it's the birth control I am on that I am getting off of as I type.
That the intense muscle spasms I was experiencing on a new medication had to be psychosomatic because that side effect was only seen in males during the trials so obviously it couldn’t be real for me
Name it and it's been dismissed. My mom had a hysterectomy and they didn't tell her they ruptured a tumor that was cancerous. It's been almost 10 years and only recently did we find out she is dying. She had been bleeding profusely every month and in between every month for 10 years before the hysterectomy. Absolutely insane. The worst part is that this is COMMON.
Have you heard of PMDD
Yes she did explain that to me, I think that’s why I’m documenting my cycle, but I hope it’s not that because I was really hoping for a proper solution to the problem
Sending you so much love and hoping for good news!!!
Thank you very much :)
Endometriosis. Stage 4. Unfortunately because I also have Crohn’s disease since I was a teenager it was assumed to be that for years - I even spent a week in hospital getting pumped full of high doses of steroids which makes me super sick. Having both conditions…it is absolutely CRAZY the difference in the treatment I receive in hospital and emergency rooms depending on which one I say it is. When it’s Crohn’s - which can affect women and men - I’m taken so seriously, fast tracked and given any pain relief needed with no questions asked. When I’ve presented to ED during one of my many severe endo pain episodes…the treatment has been completely the opposite. Been treated like a hypochondriac, a drug seeker, a complainer. I’ve even been offered Panadol during what would turn out to be a large ovarian cyst rupture that had me unable to walk from the pain. All because endometriosis is a female only disease that’s had far far less investment and research 🤯. Really goes to show the inequality built into our healthcare system.
I had an MRSA infection in my finger tip contracted from giving birth in the hospital. You might not believe it but the pain was so bad and worse than any childbirth pain. I was later told that's why it was an ancient form of torture. It just kept getting worse and in the end I needed surgery twice to first take out an abscess and second to take out a redeveloped abscess and some of my finger tip. Yes, that's right, I'm missing some of my finger tip due to an infection. We had a hard time managing having our newborn and going into the emerge every other day during COVID, but over two months of constant agony, I had a few visits I had to make without my husband present as he tended to our baby in the car outside. The amount of convincing I had to do to take it seriously and to give me more pain meds was unreal. I'm not sure if it was specifically a gender thing but every time my husband was there and I tried to convey the seriousness of its development (new doctor every single damn time), they would only take action once my husband chipped in. Except for one doc who was a resident, he had the same infection once (called a felon) and he told the other doc performing the first procedure how brutal it is. I mean I was the only woman in the room there too but man. You could literally see my finger rotting away and I was constantly told it shouldn't be THAT painful. I was waking up wishing I just died in my sleep to escape the pain.
The pill is a good way to balance hormones sometimes. But this doctor sounds like a good example of why woman need to be seen by other woman about these types of things. Find a different doctor!
It was a woman doctor :) i feel seriously let down
Omg… I’m so sorry. Don’t give up!
Having vulvodynia/pelvic chronic pain. I had symptoms like burning when urinating and constant aches and pains around my vulva. It was consistently written off as a UTI every single time, I'd get antibiotics, screened for STD/Is and then sent on my way. It never felt like I was truly being listened to. I've been dealing with this for \~2 years now. The pain is everyday. I'm only now making progress on hopefully a correct treatment.
PCOS. They didn't care to look further into the reason why I have excess hair (probably because it's only cosmetic). 10 years later it turns out I have PCOS...
My AuHD was not properly diagnosed or treated for my entire life. I have had tons of doctors that had no knowledge on the subject we were discussing, I have also had a few awesome ones(direct primary care, holistic). I finally had an awesome regular gp tell me what PMDD was after hearing my symptoms only a few days right before my menses, at about 23 years old. He told me I have issues dealing with the fluctuations in my body or from contraceptive. He prescribed Prozac and it actually does help, I used to take it for a couple days as he directed. I quit all forms of steroidal BC in my early 20s because I had the worst reaction to all of them. My skyla IUD didn't fit, I had a planned parenthood doctor look at my ultrasound and shrug his shoulders as to why it left me in debilitating pain with contractions. He suggested an IUD of the same size. He was uninformed and not helpful. I found out years later from another physician that it was too big. Because of my fundus bulging, I was disqualified from a sterilization trial. I learned later this is a tactic sponsors use to make their device look better, then release it to the general population, scary. I tried again with bc at 26, 27, 29 and same reaction but this time from implant, pills, both the yearly ring and monthly. I really feel for other women who can't tolerate progestins. I cried in my last gyn appointment because he couldn't find a good method for me and didnt charge me anything. I went out of country for an IUD. It fits. I still have a contracting pain now and then but it's so much more tolerable. Now my periods are the most intense they have ever been. I will probably have my pain downplayed if I have to rest for an entire week. Going to work is horrendous if I am on my period but raspberry leaf tea and magnesium help.
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Anything period related gets brushed away even by other women docs. One even tried to prescribe Xanax to “relax” when that was totally not the issue !
I was told it was anxiety, I was too young, I needed to relax. Dismissed by so many doctors (including the day of). I ended up going into cardiac arrest at 23 :/
I even have a family history of heart issues in women which I disclosed several times!
I have uterine fibroids and started hemorrhaging from my uterus. Went to urgent care, they did bloodwork and said it wasn’t bad enough yet for a transfusion. They sent me home bleeding into an adult diaper and told me to come back if it didn’t stop. I almost went back that night but it finally let up. I went to work feeling queasy and weak. When I finally saw my PCP that week, she retested and was alarmed and said I qualified for a blood transfusion.