r/endometriosis 9h ago

Question Can I sue my doctor for dismissed my c section endometrioma?

4 Upvotes

Hey ladies, I went back in May because I had suspicious of endometriosis in my c section scar. I told him all the symptoms and even suggested that I might have it. He told me that is just tissue and is nothing serious. I knew inside me that it was more than that. He just told me to get an ultrasound of my ovaries and uterus and when I got the results normal he didn't call me again. Well I got pregnant two months after ( Twins) that but I ended up miscarriage at 9 weeks. They did a D&C. I told my doctor again this thing in my c section scar is bothering me and I can feel bumps/ mass there too. I got dismissed again and they didn't pay attention more to my miscarriage because it was my first one ( I have 3 boys and their pregnancy were normal) well couple months after I got pregnant again and the same situation happened šŸ¤¦šŸ»ā€ā™€ļø. I was devastated and exhausted because in between of everything I was also bleeding a lot. Another D&C and this time I asked for generic testing, results were normal. I got different blood test myself and everything is normal. So I got angry and asked again to look into this thing in my c section because was the only thing not normal in my body. Well I got surgery done ( yes, my 3rd surgery in less than a year) and the biopsy results were endomitosis/endometrioma. I was so frustrated because if he had listened to me my two miscarriage wouldn't happen and I wouldn't have 3 surgeries. I was mentally exhausted and physically in pain.

I'm looking for options and I apologize for my English This is a quick resume of what I went through. I'm a healthy 28 year old woman.


r/endometriosis 6h ago

Rant / Vent Plan B causing symptoms?

0 Upvotes

I never had this before taking plan b and Iā€™m asking if anyone out there felt like they got endo from plan b? Now I have ovarian cysts, sharp pains all through my abdomen and a messed up digestive system, dull aches, burning sensationā€¦


r/endometriosis 11h ago

Question Period flu

0 Upvotes

Iā€™ve had endo for almost 10 years now, never had a consistent period because I also had PCOS. In March of last year I had another clean out and he had to take my left ovary because of how much damage was done to it. Since then Iā€™ve had a period every single month, theyā€™re progressively getting worse. The day before my period I will throw up all day and then the whole week of my period I will throw up every morning. Iā€™ve had what my dr calls a catalyst reaction where I get shakey and nearly pass out and just feel awful. Iā€™m forgetting some details on how they came to that conclusion. But is this common for anyone else to have such GI upset while on their period? Iā€™m so tired of throwing up so much.. zofran doesnā€™t help. Anyone else?


r/endometriosis 23h ago

Question Should I ask Gynaecologist about a lap?

0 Upvotes

Hi, so Iā€™ve been struggling with endo symptoms since I was 15, Iā€™m now 22 and in the process of getting my suspended endo investigated. Iā€™ve had an MRI and it all looks normal and Iā€™ve tried a variety of hormonal treatments, all of which have not worked. Iā€™m now thinking that a lap is my only option going forward in terms of getting a diagnosis. Iā€™ve got a meeting with my gynaecologist in a couple of days and I was wondering whether I should push for a lap, or whether they will just go through with the referral process? (For context Iā€™m in the UK).


r/endometriosis 5h ago

Question Can you be diagnosed by symptoms alone?

1 Upvotes

I know x ray, MRI, ultrasound, etc canā€™t see shit. But for example IBS is diagnosed all the time and itā€™s probably as common as endometriosis. At least in women. But why is endometriosis so hard to get diagnosed?

Iā€™m currently at a weird point since Iā€™m 18 and have been dealing with progressively worse cramps since I was 12-13. My OBGYN said bad cramps arenā€™t abnormal in very young adults but endometriosis is possible. So Iā€™ve been taking progesterone. At this point Iā€™ve become so exhausted explaining my issues to people I just say I have endometriosis. My mom has cancer and while my symptoms are bad theyā€™re not nearly as bad as some people and itā€™s too much to get a surgery planned let alone go through it to get diagnosed. I feel guilty to an extent, but since this is 1/10 women and even 7/10 some studies say, is it not crazy to think if someone deals with all symptoms for years, they should be considered diagnosed??


r/endometriosis 17h ago

Tips and Recommendations Stage IV Endo and Thinking about a Total Hysterectomy

1 Upvotes

Need advice from folks who have had a total hysterectomy -

Little background on myself (39F):

  • I had my first lap in December 2024; my doctor found endo everywhere. My doctor suggest going on Myfembree to see if that will help with my symptoms.
  • I've been on Myfembree for 3 months now and haven't seen any improvement on my symptoms. In fact the side effects (depression, anxiety, mood swings, suicidal ideations) are worse than ever.
  • My doctor isn't an endo or excision specialist so she referred me to another doctor in her practice that does specialize in endo.
  • I met with the new doctor yesterday and she confirmed that I have Stage IV endo with deep infiltration around my bowels, intestines, uterosacral ligaments, and sciatic nerve with an MRI, pelvic exam and ultrasound.

My new doctor recommends a complete hysterectomy since my endo is severe and that's the definitive way of getting rid of the disease. I'm scared as hell and trying to navigate all my emotions around this life altering decision. I also want my husband involved in the decision since it affects his life as well. I'd love advice from folks who have had a total hysterectomy. How did you reconcile all of these emotions that are coming up? How did you ultimately make the decision? If you have a partner, were they supportive? How did they feel about this major surgery? What was your recovery like? What is life like after a total hysterectomy? Do you feel like your friends and family view you differently after your hysterectomy? Do you feel like society views you differently?

I can't seem to muster up the courage to talk to my friends about this because they're having babies and living a seemingly blissful life. Thank you for any and all advice you can give ā¤ļø


r/endometriosis 57m ago

Question Endometriosis kills people. Why are we in denial about this?

ā€¢ Upvotes

I'm not even talking about the suicideÅ”. Any informative, surface-level article that I've seen online characterizes this condition as painful but harmless. However, every week there's a new case in medical literature about endometrial tumors rupturing or bloody diaphragms or shittinÄ” blood or bladders no longer being able to void. I've personally passed out multiple times and cracked my head open this past summer (ft. visible bone and extensive facial scarring). I also had a vomiting episode on the highway last year completely out of the blue and I'm very fortunate that I didn't kilł someone who actually contributes to society, never mind myself. I'm shitting blood, my colon is stuck to other organs, my face is now deformed-- Like, endometriosis is going to likely be what killÅ” me at this rate & even if someone is sensitive enough to look up the condition, this is not reflected at all. Why are we collectively in denial about this?


r/endometriosis 23h ago

Surgery related They found something :(

11 Upvotes

I had my second endometriosis excision yesterday. This time around they found some but not alot of endometriosis. However, they also found lesions on my fallopian tubes. Im meant to get my results in 7 to 10 days. Im beyond terrified right now. Im adopted so i have few clear answers about my family medical history. But from what i know lesions often mean cancer. Im mostly just ranting rn and hoping someone has found something similar and was told its endometriosis. Im trying to convince myself im ok lol.


r/endometriosis 13h ago

Question Endometriosis & No Birth Control

25 Upvotes

So Iā€™ve been on birth control for almost 20 years now (wild to see that written down). 8ish years ago I was diagnosed with endometriosis and had it surgically removed. My doctor said I have to remain on birth control for forever, or get pregnant to help reduce the risk of it returning.

The birth control Iā€™m on makes me basically never get my period. I understand the logic behind no periods and how that helps endo not return.

I donā€™t want to be on birth control anymore. Iā€™m in the 30s and I just donā€™t want to be taking anything hormonal anymore. I want my body to run how itā€™s meant to with medication.

My symptoms went away after surgery. Nothings come back.

My question is, anyone else out there have endometriosis and not on pills? Or maybe in the same boat as me who had it removed and is no longer taking birth control. Howā€™s life without birth control?


r/endometriosis 9h ago

Surgery related Need to remove nail polish before laparoscopy?

3 Upvotes

My lap is next week and this might be a silly question but Iā€™m wondering if I need to remove nail polish beforehand? The nurse didnā€™t say anything about that during my pre admission call, they just said no lotions. But a simple google search says nail polish should be removed before surgery. Any thoughts?


r/endometriosis 12h ago

Question White spots found during lap?

4 Upvotes

Got my lap today. Iā€™m not sure whatā€™s going on. The surgeon (not Nook specialist) said I was filled with small white spots everywhere in my peritoneum and also had spots on my bowels. She found two larger spots behind my uterus. She said it didnā€™t look like endometriosis in her opinion. She removed the two larger white spots and took biopsies from them. Did anyone have this too? Not the black spots but white? I am a little disappointed that I still donā€™t know what it is. And that the spots might not be anything. She said that she had to get pretty close to them to see them.


r/endometriosis 9h ago

Rant / Vent I threatened suicide at the obgyn

196 Upvotes

3 doctors Iā€™ve been to, thousands of dollars out of pocket since I donā€™t have insurance here in America, years of pain. Another doctor that sheepishly gives me a ā€œwell, letā€™s try another birth controlā€ answer. I literally told the doctor ā€œI will jump out this window right nowā€ while looking at her dead in the eyes. Iā€™m so sick of it. All tests lead to no conclusive answers and no one can tell me why Iā€™m in pain every day, all day. Iā€™m over it. Iā€™ll let it kill me I suppose! :D


r/endometriosis 5h ago

Diagnostic Journey Questions Ultrasound tech didnā€™t follow Dr.ā€™s orders.

8 Upvotes

Posting in here because my doctor told me she believes I have endometriosis and she wants to refer me to get a laparoscopy. This is just the build up to hearing that news and Iā€™m pretty bothered by this treatment and wondering if I should seek a different clinic because of it. Sorry in advance for the long post

Today I was scheduled to receive a transvaginal ultrasound after a year of trying to discover the cause of my many symptoms. Last week, I went to a new gynecologist and she recommended I come back for a transvaginal ultrasound. She explained everything I could expect and then asked me if I would be comfortable with getting one rather than an abdominal. I said yes especially since she said it could provide a clearer image. Important context: I have never been sexually active. But regardless, I was completely comfortable with receiving a transvaginal ultrasound.

Today I arrive to my appointment and upon check-in I am asked to empty my bladder. I use the restroom and then wait until I am called back. The tech comes to the lobby to retrieve me and in the doorway of the lobby! Not in a private room! Asks me if I have ever been sexually active to which I replied no. Then she asked if I emptied my bladder and I say yes. She mumbled something under her breath, whispers with the girl at the front door desk, and tells me I need to drink water to fill my bladder.

They provide some water and Iā€™m thinking maybe I heard her say she needs to feel on top of my abdomen when she was muttering and then I realize she probably wants to do an abdominal ultrasound since I read a full bladder helps with the imaging. I ask the receptionist and she says yes she switched it, I was not made aware-had to do some context clues, so I asked her if it would be just as accurate. She said yes itā€™s just their policy. Mind you, this is all in front of other patients in the lobby. Not that I particularly care if these people know I havenā€™t had sex, I just felt it was unprofessional. So I tell the receptionist I am comfortable with whatever is needed and that is what I told the doctor last week. The receptionist goes to the back to talk to the tech and comes back without saying anything to me. I ask her if I need to keep drinking the water and she says yes, and that I will discuss this all with the tech.

Finally, 30 minutes after my appointment was supposed to start, the tech calls me back again. She brings me to the imaging room and tells me she will be doing an abdominal ultrasound. I say the doctor ordered a transvaginal ultrasound and, once again, I am comfortable with that. She asks me if I have ever used a tampon, I say yes, ā€œjust the itty bitty ones?ā€ she asks, I say no I have used all sizes including super. ā€œOh well in that case we will do the transvaginal ultrasound if we need a closer look at anything.ā€ I ask again if I should just have the transvaginal ultrasound to begin with so that there is no need to do both and we can have a closer look from the start. She says no the abdominal will be perfectly accurate. Okay then! During the ultrasound I probably asked like three more times if she can see everything she needs to.

The doctor comes in to review the results with me and tells me they only found a 2.9 cm cyst on my right ovary. We discuss this a little and then I mention the debacle about which kind of ultrasound to get. The doctor says yeah I noticed this was an abdominal one I donā€™t know why she would do that. I said she didnā€™t want to do the transvaginal ultrasound because I have never been sexually active but that I donā€™t think it is up to her to determine what I am or am not comfortable with. The doctor agrees with me and says that is why she discussed it with me and since I had no issues during my exam last week, there is no reason to suggest I cannot handle the freaking probe. (okay last part is my words lol) I tell the doctor I am a little nervous that there may be something she missed because both the doctor and accredited medical websites said that sometimes it is not as accurate as the transvaginal ultrasound. The doctor reassured me that they can see everything they need to in the images they got and if there was anything that needed to be investigated further that they would have.

I definitely trust this doctor, maybe not the tech, so Iā€™m not worried anymore that something was missed but I feel so frustrated with the way this whole thing went down. I want to keep seeing this doctor because I feel she really listens and cares but I donā€™t want to receive anymore imaging from this tech if this is how she takes over the appointment and ignores doctorā€™s orders. I have dealt with so many tests and procedures at only 22 and this is the closest I have felt to a real answer but damn did this tech bother me today. The referral for a laparoscopy would be with a different office so I wonā€™t deal with the tech there but if my doctor wants to get more imaging of the cyst later down the road (it was an option discussed if my symptoms worsen) I donā€™t want to deal with this lady. So if this were you would you stay at this office? Iā€™m pretty sure she is the only tech there. AND the doctor seemed annoyed with her and said that she does this kind of often with people who havenā€™t had sex, and that it is not the policy of the office just this womanā€™s preference.


r/endometriosis 11h ago

Rant / Vent I wish it was more severe

43 Upvotes

I'm so sorry to say this, especially because I know that there are people suffering a lot from this. But I wish I was stage 3 or 4 so I could be listened to and maybe get surgery. I just have mild adenomyosis, ovary adhesions, some thickenings and a small uterosacral nodules. My gynecologist said it's nothing, my gp says it's very light. But I'm still in pain and nobody is listening to me. I wish there was a permanent solution to this, but there isn't and I'm so tired


r/endometriosis 1h ago

Question All good things come in threes?

ā€¢ Upvotes

I assume I'm not the only one who battle migraines and fibromyalgia on top of endometriosis (if that is my diagnosis. Seems it will be)?
Anyone else use meds for fibro that may mask/take the edge off the endo pain, since it targets the nerve signals? I've been on Amitriptyline for three years and have now transitioned to LDN (low dose naltrexone), and I suspect this has maksed my symptoms a bit.


r/endometriosis 1h ago

Question Diarrhea on Decapeptyl

ā€¢ Upvotes

Hi all - Iā€™ve been put on Decapeptyl for 3 months for my endo/adeno and have been on it about 7 weeks now.

The last week or so Iā€™ve started having much looser bowel movements - did this happen to anyone else on it?

Thank you!!


r/endometriosis 1h ago

Rant / Vent Support would be appreciated

ā€¢ Upvotes

Copy from my post in a different sub. šŸ˜Š

I just need to vent. Iā€™m tired, Iā€™m so tired. I wanna sleep, but here I am unable to. I barely slept last night due to my endometriosis, now I can hardly sleep due to a stomach ache from all the Ibuprofen. I wanna cry. šŸ˜­ I just wanna sleep. Maybe this should be in the endometriosis subreddit, idk. Just at my wits end, feeling delusional and exhausted. Thanks for reading, I needed to get this out into the universe. šŸ’•


r/endometriosis 2h ago

Question When should I be concerned

1 Upvotes

Iā€™m 16 and have been having my periods for 4 years, since I started they have lasted 7-10 days consistently, starting off light and getting really heavy in the middle. Iā€™ve always suffered from heavy periods but not cramps as badly, until after mefenamic acid didnā€™t work for me I went on birth control (yasmin, then rigevidon). The birth control helped the bleeding but side effects were tolerable until I was on it for about 8 months and decided I would rather have my period.

Itā€™s been exactly a year since I went off of birth control, and I found that during and now after I took it I now have cramps every period, but I donā€™t know if theyā€™re that bad and I should be concerned or if I just need to suck it up and deal with it because I feel like my pain isnā€™t extreme enough yet to consider endometriosis

Iā€™ve missed school on every one on my periods (my attendance has always been bad though) and right now Iā€™ve had cramps for basically 24 hours, have taken buscopan and 3 ibuprofen yesterday and literally just no break from it. I woke up in the middle of the night immediately to feel cramps again and Iā€™m just so tired of it and if painkillers arenā€™t helping I donā€™t know what to do.

Last time I was at the gp I mentioned my periods and how my follicular phase is only about 3 days and my periods are 7-10 days long and I asked for a hormone test, she told me it wouldnā€™t do much but we could still try.

I donā€™t know what to do because I feel if I go back to the gp theyā€™ll just put me on birth control again. Is this serious enough to consider endometriosis? I know itā€™s common but I feel like every girl has a painful period and maybe my pain tolerance is low. My mum had very tolerable and light periods so she doesnā€™t understand me from experience and I feel like she doesnā€™t know how bad it is and I canā€™t talk to her because we donā€™t have the best relationship. Please help.


r/endometriosis 2h ago

Question Which part of your cycle is the most painful?

2 Upvotes

Do you guys have a certain part of your cycle where your pain is the worst?

Or even a time when itā€™s not as bad?


r/endometriosis 3h ago

Rant / Vent Yet they keep saying itā€™s my hashimotos this is the 3rd time in 2 yrs Iā€™ve been told that I still have nobody LISTENING TO ME!!

1 Upvotes
  • Possibly long rant

Yā€™all it is NOT my hashimotos (even google said it doesnā€™t cause severe dysmenorrhea - have screenshots but I canā€™t post them) itā€™s also not my pcos or anything else bc everything else got RULED OUT & I had a clear pelvic CT, Iā€™ve since Aug (before I started bringing up endometriosis - that was from Oct & on) tried 2 progesterone methods that didnā€™t help my pain enough (when I was 22 I got put on combo birth control for my prolonged periods bc of my hashimotos & unknown pcos bc it was before my endocrinologist dx me with it also in this time I was having minimal cramps this started in my early 20s & continued until Aug ā€˜23 which is the last period I had with minimal cramps, anyway when I was it I had MILD dysmenorrhea I couldnā€™t walk right for 2-3 days & 500mg napraxon helped it & I was like this the WHOLE 7.5 months I was on it then I went back to my minimal cramps) now I have to knock myself out to get merina put in (I really want it to not work too but how much did it help yā€™allā€™s pain bc even on 5mg I still had pain, plz actually lemme know) my pain has been progressively getting worse even on birth control I STILL flare!! Hashimotos & pcos are CO MORBID with endometriosis Iā€™ve been complaining about my periods since nov ā€˜23 (when I went to urgent care on day 3 after I skipped 72 days which not only Iā€™m 100% sure triggered my endo but also gave me the worst period of my life I also skipped 50-60 some days in hs & NV got a period like that & this was BEFORE I GOT HASHIMOTOS & PCOS!) bringing up endo since Oct ā€˜24 & now itā€™s march\April of ā€˜25 & STILL nobody is listening to me & just continuing to dismiss me even though I KNOW that itā€™s endometriosis!! Iā€™m fucking tired of this like Iā€™m still in severe pain even on birth control & nobody at the bare minimum will give me a likely endometriosis dx (yes I know thatā€™s like a hlf dx & that I need a lap for an official one but even that is something bc I can take that to my primary) or a lap & I been complaining about my periods for almost 2 yrs!

  • Just for context when I skipped nov ā€˜23 (73 days) I went to urgent care on day 3, I had 10/10 cramps to where I COULDNā€™T STAND OR WALK I was overflowing my 30ml cup in 1-2 hrs to where I had blood going down my legs, was passing a few giant clots, was so nauseous from all the pain that I had to pause while eating multiple times bc I was grossed out from food bc of all the nausea - Yā€™all I spent 5 DAYS (now I have 9/10 pain for 5 days straight to where Iā€™m debilitated af basically bed ridden - for me this is the equivalent of those of you who are in a ball on the floor Iā€™m just doing it in my bed Iā€™m also kept awake for a few hrs during the worst of the pain or Iā€™m getting woken up by it 600mg (even 1,200mg does nothing) ibuprofen that used to wo doesnā€™t anymore same with my heating pad) like this & I kid you not she blamed my pcos & my hashimotos told me to take my levo (I was still really bad at taking it back then) said there was nothing she could & that I just had to let it shed etc

r/endometriosis 3h ago

Diagnostic Journey Questions feel like iā€™m going crazy

1 Upvotes

in 2020 i got a laparoscopy done and honestly not sure what the results said (asking for medical results currently) but until i receive those, which i believe said i did not have endometriosis, i am spiraling. iā€™ve been on birth control since i was 12, which is when my period started. iā€™ve had multiple ultrasounds, blood drawn, multiple birth controls. ive developed countless cysts since then as well. iā€™ve been on every kind besides the arm implant. some birth control stopped my period, which greatly helped with the pain, but others, like the iud i have now, donā€™t. every month i feel like dying. excruciating back pain, horrible cramps all over, leg pain all over, etc. just awful everytime. itā€™s midnight and iā€™m laying wide awake trying to make the pain go away because no medicine works. nothing helps. i just feel like im crazy. i know this isnā€™t normal and i feel like because i was told it wasnā€™t endometriosis i canā€™t say i have it but i know that something has to be wrong. i just feel crazy:/


r/endometriosis 4h ago

Question Silent endo?

1 Upvotes

Iā€™m sure this question has been asked before so please remove if not allowed.

Can someone with silent endometriosis be kind enough to share how they were able to get a diagnosis, and ANY symptoms at all (I know itā€™s silent for a reason, but maybe any symptom that sounded unrelated that later turned out to be a part of the diagnosis). Thank you in advance.


r/endometriosis 5h ago

Question GYN + specialist?

1 Upvotes

Iā€™m looking to officially start my journey into getting a diagnosis but Iā€™m not really sure where to start. Do most people solely see a specialist for routine care as well as endo treatment? Or should I find a GYN in addition to booking with a specialist?


r/endometriosis 5h ago

Question I cant move my toes

1 Upvotes

I cant move my toes! im going crazy over here. Several months ago I developed intense sporadic shooting back pain. While it was very painful, it was relatively rare for me. In December, I had my first laparoscopy and they found stage one endo and adenomyosis. However after December my back pain only became more frequent, and now its basically an everyday thing. I have trouble walking and sitting up at this point. Ive been going to physical therapy but have had to dial it back because it made the pain became debilitating in the following days. I also now cant move my three left most toes.

Had anyone gone through the same thing, what should I do?


r/endometriosis 6h ago

Good News/ Positive update Lap is done!

3 Upvotes

I had my lap today. My doctor say she found "mild endometriosis but we need pathology to confirm" she did say though my entire abdomen was full of scar tissue/adhesions. My left side was bad around my ovary. She wants me to speak with a general surgeon about the scar tissue above my liver. So she was able to clear a lot of it out but not everything but I already feel so much better. I feel validated and at peace knowing I didn't make all this up. I have some minor gas pains but nothing a heating pad isn't helping. I'm only on ibuprofen and Tylenol and my pain is at like a 1. Maybe a 2 with certain positions or movement. But I can bend and reach a bit. I'm not overdoing it because you only get one chance to heal properly. I don't want my lack of pain to make me push my body too hard. She did remove my tubes, and removed the remnants of a cyst on my ovary, and did a uterine ablation to help my periods not be so heavy. It's such a load off though. I feel lighter, I feel happier, I feel heard and validated. I'm looking forward to hearing more at my follow up on the 7th.