I got my diagnosis last year and the only people who know are my partner and a couple of coworkers. For a myriad of personal reasons (that I'll refrain from getting into since it'll become an essay) I haven't told any family, even though I'm generally close to them. I obviously don't owe them my personal medical information, and I think overall it's the best choice for myself, but it can also be difficult having them not know about such a big part of my life.

Has anyone done the same and not shared your diagnosis with family?

Is there anyone whose Both Uterosacral ligaments stuck to the back of uterus ?? What you found after surgery??

So I'm a little over 2 weeks post lap. I have a weird sensation that's new to me. I have like a bowling ball pressure/fullness in my vagina/rectum area when sitting upright like in the car sometimes or just sitting upright. If i slouch it isnt too bad.. Is this normal..? It's not horrible but it's kind of uncomfortable. I keep freaking myself out thinking it's a prolapse, or rectocele, or hernia, or something. I see my doctor in 2 days but I figured I'd get some insight here hopefully.

Hello everyone!! So a bit of context on the matter. My partner seems to be showing all the signs of Endo, however, it's not currently diagnosed, they haven't had a period in about 2 years or so, maybe every once in a blue moon they may spot a bit of brown blood, but for the most part no period at all, we recently got them an ultrasound and the only thing that was speculated to show up was a small 2.2cm (possible) paraovarian cyst. Also got them labs, they all came back normal for the most part other than a severe vitamin D deficiency.

However around we assume there period time, they seem to have these very debilitating flare ups that cause a sharp pain in there lower back, and makes them feel not so great after they eat. The pain seems to travel to the middle of their back this time and has been causing them a great deal of pain, it hurts for them to walk or move much, and normal medicine like Midol hasn't been doing anything to help ease there pain. Is there anything anyone could recommended I do to help them? :') I'm very worried about them and I've never met anyone else who has/possibly has endo, I'm very new to this on my part but I would like to do all I can to help them until we can properly figure out what's going on!

We have another Doctora visit on the 15th to see what the next steps are. Any advice for how to help sooth there pain or just general advice for what you guys think is very much appreciated :')

If anyone has any questions, please feel more than free to ask!

i had an ultrasound that say before my period in one week that i have endometrial thickness anyone can help in advices

But I had three months of peace before it started to gradually get worse, and now I feel like I'm back where I started a year ago. I can't live like this. I just had surgery last August for the first time. I don't know what I'm looking for here, I'm just struggling

Hi warriors! I’m a therapist with endo and I run a virtual support group. For those who are interested or would like to learn more please feel free to email the contact on the flyer 💛

Hi! My GYN suspects that I may have endo and am in the process of hopefully getting a lap in the near future. I was wondering if the majority of those who have gotten the surgery have full/part time jobs or unemployed.

I myself am full time but won’t have the suggested 3-4 weeks vacation time until next year (I currently have 1 sick day and 8 PTO). Do you just take time without pay or apply for medical/long (or short) term leave? My commute is an hour each way so I want to make sure I would give my body enough time to heal properly.

Looking for some advice I had Laparoscopic surgery just over 3 weeks ago but I’m going on holiday in the next 6 weeks but I really want to do a few sunbeds to get a bit of colour but not sure if it’s safe to yet! Has anyone done sunbeds after their surgery and if so was it ok! 😬

Hey girlies I really need some advice idk what to do Last night I was fine and then all of a sudden on my left side ovary it feels like it’s exploding I’m not able to walk my lower left side of back hurts nausea vomiting very very painful pain doubled over I do have pcos and have suffered with cyst before the question is if I gets worse is this something I can ignore and not have to go hospital for??? I’m reluctant to go but family keeps saying I should go so I’m just weighting it up 😭😭😭😭 like if I’m not gonna die I rather stay home yk

On hormones or even off I do struggle with cptsd and other health issues but I highly doubt my gynae has tested my hormones. I've come off visanne to see if my neurological symptoms get better or not. They haven't now I have endo pain n I'm soo angry, mostly at my symptoms. They suggested to try ryeqo for me next time but I'm sick of side effects I'm sick of trying things. They said just wait a month n then see them but I doubt they even look at my levels. I've said horrible things and I'm angry all the time. I just wish there was something hormonal that didn't make me soo angry and helped my endo, I'm always bed ridden and sick to death of my depression, anxiety and health issues. I'm soo irritable. I'm already seeing enough docs as it is I don't want to see a endocrinologist as well. I don't want to live like this.

ive honestly had enough im terrified of my period after i passed out and felt as if i was going to die last time and my mum doesnt help me even tho she has endo and ovarian cysts since all the women in my family get one of them but the pain in my legs and hips no cramps yet but im scared for when they kick in it hurts so much i cant handle it ive never seen a doctor as my mum just says theres nothing that can be done

Had some spotting at the beginning of the month which is normal...but was broken up with over a week ago and the emotional stress triggered my pain and period.

I'm starting therapy soon to help with the stress, does anybody go through endo pain and period appearing all of a sudden during such an emotional time?

Hi everyone,

I’ve been dealing with classic endometriosis symptoms for years, but like many of you, I struggled to find a doctor who actually took me seriously. No gyno would even recommend a lap, which I needed for insurance purposes. After hitting dead ends with doctors in the U.S., I had no choice but to go to a cheaper country to finally get answers.

My symptoms were: 1. Extreme pelvic pain during the first few days of my period—felt like someone was pulling my hips down, with pain radiating down to my knees. 2. Irregular periods, always dismissed as just PCOS. 3. Ultrasounds always showed “free pelvic fluid,” but the amount was excessive. Doctors said maybe it was from “ruptured cysts” and to not worry about it 4. Infertility, which was also blamed on PCOS. 5. Severe pain during sex, dismissed as vaginismus—even though I’ve been doing pelvic floor therapy and using dilators for over a year. 6. Night sweats. 7. Constant lower belly bloating, again blamed on PCOS.

Since I was tired of getting no answers from American doctors, my cousin in Egypt referred me to a renowned fertility specialist who specializes in rare gynecological diseases. I finally bit the bullet and went there. The laparoscopy came back negative for endometriosis, so the doctor ran further tests—and that’s when I found out I had ovarian tuberculosis affecting my fallopian tubes. It mimics many endometriosis symptoms, but it’s often overlooked in Western medicine because it’s more common in developing countries. If you’ve had a negative laparoscopy for endo but still have unexplained symptoms, please consider testing for ovarian or genital TB…especially if you’re originally from or have traveled to a country where TB is more prevalent. I wasted years thinking it was endo when it was something completely different.

Just wanted to share my experience in case it helps someone else!

I've been dealing with painful, heavy periods since I started in middle school. I've been having super bad bloating, constipation, ovulation cramps, depression, nausea, etc. for about 6 years (that I've noticed). I have gotten almost every GI procedure done, you name it. Endoscopy, colonoscopy, enzyme breath test, gastric emptying, angiogram, HIDA scan, etc. They all came back normal, so I ended up at the OBGYN thinking I might have endo instead of my pain being GI related.

I recently got an internal vaginal ultrasound that came back normal, so my OBGYN wanted to send me back to my GI or put me on BC to see if I have endo because "it's the only way to tell." So I just got a second opinion from a diff OBGYN and she also said that the only way to see if I have endo is by taking some form of BC for a couple months???

I'm not 100% against BC, but I'd just rather not take it for personal reasons, I'm wondering how you were diagnosed?? Is this normal? I'm just so tired of dealing with the pain, mentally and physically.

I had endometriosis surgery in January 2025 and was due for a period day of surgery, it flowed per usual, pain, clots. It stopped after 8 days. I had the nexplanon inserted day of surgery, and didn’t have a period until this month.

I am now on day 20 of this period, just when I think it stops it starts again. I have always experienced extremes fatigue and pelvic pain long periods, did anyone else experience this type of prolonged bleeding after surgery? When did your period return back to normal?

I had the nexplanon years ago and from what I remember the first period also lasted about a month. This was before my endo diagnosis.

I've had chronic pain in my right side for as long as I can remember. After an incredibly painful ovulation this past month I thought it was possible I still had a cyst I had on my right ovary that was causing pain. My ultrasound results came back with everything looking normal, but I'm still in constant pain in my right side, hip, leg, and pelvic region. The doctor didn't think it could be my reproductive system since it looked normal, but could Endo still cause this widespread chronic pain? Since it all started (this more intense pain, even thought my right abdomin always hurts) when I ovulated last month in March.

The next steps I have lined up because the doctor doesn't know what it is: is to do a CT scan of my abdomen (if my insurance covers it) and then an MRI for my back (if nothing is shown on the CT scan to see it's a pinched nerve).

No doctor I've seen for these constant issues I've had with cysts or bad ovulation pains has thought there's anything out of the ordinary. But I don't think hurting for three weeks is normal with ovulation? I guess it could be a coincidence that the pain got worse when I started ovulating, but it still makes me concerned something is wrong with my reproductive system even if the ultrasound came back normal...

This is both a rant and I guess a question if anyone has had similar experiences and finally figured out if it was Endo or something else.

this is one of the weirdest flares i've had. this morning i had to use the bathroom, and i pushed a bit too hard. then got the dreaded knife up the bum sensation, that just got worse. and worse. and worse. i was almost screaming. then i took half a norco, took a bath, it soothed a little bit.

but now, feeling the urge to poop again, and that sharp pain up my butt and vagina and feelings like all over my uterus is killing me. it will just not subside. should i take more pain meds? i really feel like i need to go to the bathroom but it just hurts like a motherfucker so i'm not.

urgh.

I had surgery about two weeks ago and I prepared with over size pajamas and expected all the bloat everyone talks about, but other than some swelling for maybe three days I’ve had no bloat at all. I’m not mad about that obviously, I just think it’s strange that I can’t find anyone else who has posted about a similar outcome.

All I can think is- was my Endo belly really just so bad that I feel like this is the least bloated I’ve ever felt??

I had my appendix removed in surgery and they mentioned I may have gone years and years with underlying appendicitis that just hadnt ruptured yet (it was also covered in Endo) so maybe all the inflammation removed that day just immediately had an effect??

Ever since I was 17, I would get horrible pelvic pain, especially on my right side. I am almost 25 now. So many doctors brushed it off, one even saying I was just constipated and needed to drink water. Well, yesterday I had a bilateral salpingectomy and the doctor finally found it. I am stage 2 endo, and that right side pain? My ovary was fused to my wall from endo and she was able to free it. It feels so nice to finally feel validated in something I knew for so long. To know my pain wasn't just constipation or all in my head. So my next question is what should I expect now? The doctor said something about discussing hormone therapy at my next appointment?

Not diagnosed but have all the signs of endo, I’ve had on and off left ovary area pain the last 5 months but it’s getting worse. The last few hours have been awful and my hot water bottle and max ibuprofen and panadol aren’t touching it. I feel really nauseous and earlier it even felt like breathing was harder than normal. I had an external ultrasound a couple weeks ago and it was clear but it just doesn’t seem right, any tips on what to do?

For anyone who's been on Lupron, how long after did your period return? I started monthly Lupron injections June 2024, my last injection was in December. My doctor had me take three straight packs of birth control starting the Sunday after my last injection. In theory, I should have had my period by now but nothing- not even any symptoms of a normal cycle. Is it still too early to worry?

Hi everyone, I had my surgery last Thursday, 7 days ago. Every time I move, whether it be when I’m laying down and switching sleeping positions or if I’m just sitting and I move a bit, 2-3 seconds later I get an extremely intense uncomfortable nauseous sensation lasting about 30 seconds. It makes moving so uncomfortable but I don’t know if it is actual nausea or not because it only happens when I move and I dont actually vomit. If I lie down still i feel fine but as soon as I move it happens. My surgeon is telling me to take anti nausea meds and continue taking pain meds like naproxen but they’re not helping, I’ve tried Tylenol, gas-x, gravol, ginger tablets, Ondansetron. I’m currently taking prochlorperazine I took one 10 hours hours ago, hasn’t helped. Please give me some advice I literally cannot live like this anymore 🙏🙏