r/Endo

I (23f) must emphasize location in my medical journey. My home of Utah County is the location 90% of my medical care. According to NYT, this is youngest county in the nation—likely due to all the baby making that goes on down here. No fuss to our lovely mothers on here! They deserve quality care too, and I wish only that for them.

Our doctors are overrun with women planning their families. Mums deserve more attentive care, and I deserve someone who recognizes/listens to my battle with (suspected) endo.

I am young, but not dull. My GP told me that my endometriosis is incurable, and I know she is technically correct. But she refused to refer me to a surgeon, claiming that no one would operate on someone so young.

She recommended having a baby.

I know, from everyone here, two things:

1. Surgery will not ameliorate the pain in most cases.
2. I am not too young for surgery.

Still, I demand surgery. Birth control is the only thing the doctors will/can do. I would literally kms on birth control due to my sensitive hormonal/mental health balance. But my doctors refused to explore anything else.

But I am not dull— I have done my homework.
I do not have Crohn’s disease, proved by a negative DNA test. I attend pelvic floor therapy every two weeks. I avoid triggering exercise and food.

My body is entirely in my control, and I know my intelligence would not lead me to anything malicious. If I want surgery, I should have surgery.

How can I persuade my doctors to give me a go ahead on surgery?

Even if I don’t need it, I want my diagnosis. I want it bad.

Hi there i am through my first pack of Slynd with the intention of skipping the placebo’s and ending my periods. (I’m in my 30s if it matters)

I ended up with Slynd because everything else I’ve tried makes me so nauseated that I can barely make it through my day- I’m dry heaving constantly. I am not interested in IUDs (no thanks to getting my cervix hole punched… I’ve worn cups and discs and I’m very aware of how sensitive my cervix is)

My only side effect is I just won’t stop bleeding… I’ve had a 2 week period. Everyone keeps saying SPOTTING is common but this is more than *spotting* I’m having to wear a pad or go through several on a work shift… I will bleed through my pants if I dont wear something. I’m exhausted and crabby… I had some mild cramping last week and some headaches but now I’m just bleeding.

Has anyone come out the other side of this? Will i actually stop? I don’t have many options left so it’s either this stops my periods or I go back to raw dogging the PMDD and endometriosis until I give up and have a hysterectomy…. Apparently I cannot stomach pills that contain estrogen.

😭

Hey all, I need some advice on what to do or what happened to you guys or what helped. I was diagnosed with endometriosis October last year by surgery and thing is they only did ablation which sucked... Pains went for 5 months I felt great and thought that was it then 5 months later around march this year the annoying pelvic pain I had all came back all day everyday the pain was there. But now about June/ July time the pains are getting worse and my legs are always crampy and so is my lower back. Now I'm always constipated too I'm relying on dulcolax, fybogel and movicol BC if I don't I can't go for days and it's really draining... I have a Gynaecology appointment 16th BC they wanna send me to a fertility clinic elsewhere BC they said they can't do anything anymore as they did all the ultrasounds, MRIs and surgery and everything is just getting worse and they put me on the mirena when I had my surgery and I just haven't had periods which is normal I guess but I just don't want these annoying symptoms BC it's draining and it's taking everything away. My course, after hours activities and just life in general... I tried everything changing diets, medication and nothings working. It feels like something is always coming out of my private like discharge or something and I keep checking in case it's blood but it's not and I get confused. I really need advice and what to do because it's really draining... Trying so hard to manage but it's so hard when nothing you try works...

Age/Sex: 31 F

Height/Weight: 5’7, 144 lbs

Race: Caucasian

Location: USA

Medications: dicyclomine, allergy medication (OTC)

Allergies: Penicillin, bactrim

Smoking/drinking/recreational drugs: na

Existing diagnoses: IBS-C, chronic pelvic pain/dysmenorrhea/dyspareunia; possible adenomyosis/endometriosis being considered

Duration of complaint: Pelvic/period pain since around age 15, progressively worsening over years

I’m looking for guidance on whether pursuing a second opinion is medically reasonable after a negative laparoscopy.

I have had progressively worsening gynecologic symptoms for years, including severe period cramps, heavy bleeding with clots, cyclic pelvic pressure/pain, right-sided ovulation pain, pain with sex in certain positions, cramping for days after sex, constipation that worsens around ovulation/period, pain with bowel movements, bloating, and occasional urinary slowing during flares / burninf urination with no presence of UTI/STD. I also have IBS-C and had a prior colonoscopy spring 2025 without major findings.

Because of suspected endometriosis, I recently had a robotic-assisted diagnostic laparoscopy with possible excision/fulguration. I was told no endometriosis was found, but no biopsies or tissue samples were taken because my surgeon did not see visible lesions. So I do not have a pathology report confirming or ruling out endometriosis. I do have the photos, I am willing to share in private. I'm not comfortable posting them directly on reddit.

At my follow-up, the options discussed were mainly hormonal medications/IUD versus hysterectomy. I have already struggled with hormonal birth control side effects, including daily cramping, nausea, breakthrough bleeding, and missed work. I also do not want children, so hysterectomy has been discussed, but I’m worried about making a major decision without understanding whether endometriosis, adenomyosis, pelvic floor dysfunction, or something else is driving my symptoms.

My doctor told me I need to figure out “what side effects and symptoms I want to live with.” I understand all treatments have tradeoffs, but I still feel like I don’t have a clear explanation for my symptoms or confidence that subtle endometriosis/adenomyosis was fully ruled out.

My questions:

After a negative diagnostic laparoscopy where no biopsies were taken, is it still reasonable to seek a second opinion from a minimally invasive gynecologic surgery/endometriosis specialist?

Does a “negative laparoscopy” mean the same thing medically if no tissue samples were taken, or does it only mean no obvious visible lesions were identified?

Can subtle/atypical endometriosis be missed if only obvious lesions are looked for?

Are peritoneal pockets/Allen-Masters windows something that should be specifically evaluated or biopsied if symptoms strongly suggest endometriosis?

Would pelvic MRI be useful for possible adenomyosis or deep infiltrating endometriosis, even if ultrasound and laparoscopy were not definitive?

What records should I bring to a second opinion: operative report, surgical photos, ultrasound reports, symptom timeline, medication history?

Is it reasonable to pause before deciding on hysterectomy until I’ve had a specialist review?

I’m not asking for a diagnosis from Reddit, just whether a second opinion is appropriate and what questions I should ask so I can make a more informed decision.

Hi okay so I get my excision done in 2 days, and was wondering what your pre-surgery prep non-negotiables are? My dr. just gave me the anti-bac soap and that was all, but I feel like there’s no way that can be all, right? TY!

I’m 3 weeks post-op from my second laparoscopy. I have stage 3, deep infiltrating, one ovary removed, as well as adenomyosis.

My post-op appointment is in a month and I want to talk to my surgeon about long term management. I’ve been on all different types of birth control and Orilissa and not only were the side effects horrible, they did nothing to reduce my pain / symptoms.

I’ve heard many people say they’ve had significant symptom reduction with GLP-1s but I am already incredibly underweight and have a really hard time gaining weight as it is. I don’t even want to consider it if it’s going to make it even harder for me to gain weight.

Has anyone here with similar weight issues tried GLP-1 medications for endometriosis?

One week before my period I feel sick. During my actual period it sucks. Then after my period ends and I start my fertile week/ovulation week, I get cramps/backaches and still don’t feel great. So basically there’s only 1 week a month I feel ok. Sigh.

I’m 17f and I made a post on my local subreddit about doctors who do hysterectomies. The gist of it was “I’d like to get a hysterectomy in the future (when I’m 18-23) I have suspected endo and adenomyosis, it really debilitates me and I’m spending so much money on managing it. I have a history of ovarian cysts, have a laparoscopy scheduled for next year. Are there any doctors here that will do the surgery? I’m aroace and don’t want kids too due to personal preference and not wanting to pass genetic issues on + have mental health issues that would make having kids not the best choice. I’ve looked at all of my options and have considered this thoroughly.”
Anyway, I wasn’t expecting to be bombarded by comments not at all related to my question, but about how I’ll change my mind.

Some of the highlights were
“I had an abortion when I was your age and now I’m in my forties desperately trying to have children now. I thought I didn’t want kids and regret it. You’ll probably change your mind.” Sorry that’s happening but that’s not related at all?

“You know a hysterectomy isn’t a cure for endo, right? You’re not old enough to make this decision.” I know it’s not, but I also said adenomyosis, which hysterectomy is a cure for. (They then called me uneducated after I said I’m a reproductive biology major)

“I thought I didn’t want a family but I changed my mind and I feel so fulfilled now” great, good for you.

“Well, it’s only “suspected” endo, that’s not a reason to get a hysterectomy” It takes 8-10 years on average to get it diagnosed! I haven’t had a period for 8-10 years yet, what am I supposed to do? It’s been suggested by medical professionals, and it not being properly diagnosed doesn’t mean my pain isn’t there.

I’m so tired of people acting like I don’t know anything about my own health conditions and they do. I just mention a personal choice about children, and people feel the need to comment on that? Even though my post wasn’t about it. I would not get a hysterectomy if I just didn’t want kids. I want one because endo and adenomyosis literally make me bed bound for 7-10 days a month and I cannot remember anything from those days because I was in so much pain. I’m not just making a decision because I feel like it, it’s genuinely a problem for my mental and physical health.

Some people were sympathetic in the comments, but a majority were pretty judgy. And then it got taken down by mods.

And at places like school, if I’m having really bad pain, I tell the teacher so I can take medication or go home if I need to, but apparently I’m “abusing the privilege of having a period to get off school” because it happens so often. My periods last for 17-20 days, I bleed through tampons in an hour and faint. What do people expect?

And then when I mention that, people say “oh, math you should see a doctor” I HAVE! IVE SEEN SO MANY DOCTORS! The gynaecologist waiting list where I am is 6-12 months too, but I’ve seen them, and am in the long process of getting a diagnosis.

I swear to god, if one more person says I should take some paracetamol or naproxen (which do barely anything for my pain) or that I might change my mind and that I’m too young to know, I’m gonna burst a braincell. I do know that hysterectomies don’t really help with endo, but it does for adenomyosis which is what I struggle with most.

Thank you. I feel better after getting this out.

I just had surgery for my endometriosis 3 days ago this is my first surgery ever and Idk if I am doing enough to make sure I heal well, my family keeps on telling me to sit down but I was told by my doctor that walking was good for post opp. I feel like I should be stretching but idk how I could do that without making my insitions feel like they are going to open. I has been frustrating to not be able to do simple things without being in a lot of pain or feeling like I am going to rip open. Normally when I get frustrated with life like this I just jerk off and then reassess then situation but I can't. Idk I just don't want to mess anything up and heal as quickly as possible, I hate feeling useless like I can't do anything one my own, like putting on shoes, getting up and down ect. Like am I being to rough on myself or am I not moving enough??

Hi. This is my first time posting. I have PMOS (pcos) and highly suspect that I have endo as well, but I know it can only be definitively diagnosed through surgery. I have left flank pain when laying on that side for more than a few minutes. It’s to the point where I can only sleep with a heating pad because it’s the only thing that helps with the pain. No meds actually help with it. It occasionally will happen on the right side, but mainly the left side. It has been this way for years. My only issue is that I don’t know if that’s actually indicative of endo outside of normal areas or not. I take BC continuously because I get very painful cycles and I do have pain with intercourse, though this is a newer ish development over the last few years and I do have some bleeding after. Sorry if that’s TMI. My periods weren’t ever really abnormally heavy so idk if that is a symptom or not. I have an apt on Monday to talk with my OB about options. I guess I’m here to see if there is anyone that’s been through something similar with the side pain and sleeping with heating pads. Ideally I’d love to be able to sleep without one as I am already a hot sleeper. Any insight is appreciated. Topics to bring up with dr or just your perspective. Please be kind.

If you read this far, thank you!

Did anyone feel ok to go back to work at a desk job one week after lap excision?

I’ve had 2 excision surgeries in the past two years. I’m in need of another one already but am holding off. I don’t know how much longer I can hold off though. Mine seems to come back after about a year or so. For personal reasons, I opt out of lupron suppression. Just curious to hear about others’ experiences.

Let’s talk about just last night. I slept at 11.30 pm and by 2.30 am i woke up with such bad lower abdomen pain it felt like my whole body was on fire. I pooped and only after that my pain reduced to like 6/10. After 3 hours of hotbag and statue position and a magnesium supplement, my pain finally reduced enough to let me sleep at 6 am. Even when i feel like I’m not ready to poop, my lower abdomen hurts so much, gets hard and i feel so bad and only after trying so much and finally pooping, i can feel some ease. For this, i am pooping 2-3 times a day now whereas i used to poop only once a day before. I got diagnosed with a 5.1 cm endometrioma last month and since then this problem has started. Do you also feel the same?

guys, they found it !!!!🥹
there was “endo like” tissue found on my peri-rectal “cul de sac” and my right ovary. my appendix and cecum were apparently adhered to my pelvic sidewall entirely (so i had to get my appendix removed).
i also had an ovarian cyst on my left ovary that was drained, as well as a lesion on my sigmoid colon!
i’ve had very severe bowel/rectal symptoms as well as right lower pain for years now, so the symptoms very much track with where it was located.

just currently waiting on pathology’s report since the tissue was sent there, but my surgeon said it looks like endo tissue.
i have so many mixed emotions, especially waking up with no appendix. but i’m so relieved to finally have answers.
I stayed overnight in the hospital and am now recovering postop in bed!

Today I learned that endometriosis can mimic cancer, and I’m honestly stunned this isn’t discussed more often.

It’s already one of the most painful chronic conditions documented. It affects 1 in 10 women, is incurable, its exact cause is still unknown, and treatment is largely limited to surgery and hormonal suppression.

Then I found out it can infiltrate organs, form
masses, spread throughout the pelvis and beyond, and in some cases even resemble cancer on imaging or during surgery. It may be a benign disease, but its behaviour can be strikingly similar in some respects.

Yet people still say things like, “It can’t be that, it’s just bad periods.”

The disconnect between the reality of this disease and the public perception of it is honestly astonishing.

What do you think has to change before endometriosis is taken as seriously as it deserves to be?

What did you do if surgery didn’t fully resolve your pain?

I (31F) am in need of advice after finding out I have an endometrioma thats 8x5 cm's. The doctor sent me home with barely any information. (TLDR at the bottom)

Hi ladies,

I've always had terrible pain during my period but in the last 2 years it has become more frequent and the last few months it became daily and unbearable. At first I thought my copper IUD must have moved positions, because whenever I went to the doctor (since I was 15) about my pain they could never find anything and I was told it was normal for a girl/woman to have pain around the time of your period. Well this time they did find something but they couldn't tell me exactly what it was.

I got referred to a gynecologist at the hospital, this was about 2 months ago. She told me I have an endometrioma that's 8x5 cm's on my left ovary and that removing it could be risky because I want to have children in the near future but there was also a chance that it could burst and my body would clean it up. She said it like that was a good thing. She recommended hormonal birth control, I denied as I don't have a good experience with them. She told me to log my symptoms everyday and to come back after 3 months for a check up and if I have a lot of pain I can call to come in sooner. That's all!!

I started looking for more information online and found some posts here on reddit that were really helpful. In hindsight I have been having symptoms for years which had always been brushed off by doctors. I saw some comments mentioning that large endometrioma's can mean there's stage 3 or stage 4 endo in the body. The gyno never mentioned anything about that and also didn't speak to me about any treatment options what so ever. I've learnt more from reading your experiences than from the doctor..

2 weeks ago, while at work, I suddenly felt really unwell. I became lightheaded, nauseous, very warm, sweaty and was in a lot of pain. I called my fiance, he picked me up, called the hospital and we were able to go right away. Arrived there almost an hour later. Spoke to the doctor she did an ultrasound to look at the endometrioma, it hadn't changed in size. She also pushed against it, the endometrioma wasn't causing my pain so I asked her if it was possible if I have endometriosis on other places and perhaps that was causing my pain? She said my symptoms match that but it wasn't likely because my period hadn't started yet.. Mind you I was 7 days late, she had me do a pregnancy test and it came back negative. I also told her my symptoms had gotten worse since my first visit 2 months ago. I was sent home because there was nothing she could do and said I should keep logging my symptoms daily. Guess what happened later that day, my period started!

A few days later I spoke to someone who had gone through pretty much the same thing with a different hospital. She asked to get referred for a second opinion elsewhere. The second place she went to told her that her endometrioma had to be removed right away because it was too large. Hers was 3x5 cm. So 5 cm's smaller than mine. She was shocked to hear that my gyno sent me home twice.

I have my check up appointment on the 29th of July, my past 2 experiences at this hospital haven't been great. They haven't really helped me at all. In the meantime my symptoms keep getting worse and I'm very worried. I could really use some advice. Should I push for surgery. Also try to get a second opinion elsewhere? Anything else you recommend?

TLDR: Gyno sent me home after discovering 8x5 cm endometrioma with barely any info. Wants to monitor it for 3 months in stead of removing it because I want to conceive in near future. Never mentioned the possibility of there being more endo in my body.. Only recommended birth control as form of treatment, which I declined because of bad experience in past. Meanwhile symptoms are getting worse, went to hospital because of it 2 weeks ago. Pain wasn't caused by endometrioma. Asked if pain could be caused by endo in other places and was told that wasn't likely. Have my next check up in a few weeks. Now seeking advice.

I had my excision surgery in February and have felt bounds better. Unfortunately found yesterday that one of my best friends who I consider like a sibling to me was just diagnosed with endo. They know surgery is the way to go, but cannot find any surgeons near them. I can’t find them either!

There are no surgeons for endo located in New Mexico on the endo doctor map on the sub. I’m extremely baffled I can’t find anything. Please help if you have recommendations 😭🙏 I want to give them the best chance they have I care for them so much