So I suspect endometriosis with moderate pelvic and lower abdominal pain (mini pill and ibuprofen lysine being the main things that help, IBS and bowel disease ruled out).

I have this symptom which makes me feel ridiculous… When I run, I feel pain as my tummy roll bounces. Literally each bounce feels like it pulls something deep on either side, kind of just above where I imagine my kidneys are. Had this for years. If I make a little shelf for my belly with my hands the pain doesn’t jolt the same way. My guess is that it is yanking on some ligaments. I don’t want to stop running because afterwards, I feel so much better over all. But it puts me off.

I’m wondering if I am alone in this, and if not, does anyone have any tips? Like a way to tape my tummy up or something?

And a more general question, is it ok to call it “suspected endometriosis” given my symptoms, or does that misleadingly sound like a doctor has suspected it? Still very early on the official side of it. The symptoms seem a slam dunk for Endo, but I am a newbie to all this and don’t want to use the wrong terms when the community gets gaslit so much.

I had surgery on 9/15 and am having my first period post op now. Before surgery, my pain was always debilitating on day one. I got through day 1 and 2 of my period this time with some pain, but nothing like before and thought I was in the clear. Now I’m on day 3 and the pain is REALLY ramping up and not being controlled by meds. Has this happened to anyone else? Any advice?

Hi everyone! ❤️
Has anyone paid for an MRI second opinion with Dr Moji Balogun at Midlands Women’s Health?
I’ve booked a review with her after getting conflicting NHS MRI reports about possible deep endometriosis.
Just wondering if anyone’s used her before and what your experience was like? Did she find anything your original report missed?
Thanks! x

I started orlissa 9 weeks ago. I’m on day 67 I think. I’m having a horrible endometriosis flare. I am stage four severe endo, with a frozen pelvis, bowel endo and DIE. Prior to starting orlissa my estrogen level was 19, very low. I am a breast cancer survivor and the treatment I did for the cancer put me into deep peri menopause. I wasn’t having bleeding cycles but I was getting symptoms of a period every other month or so.

When I first started the Orlissa I noticed improvement less pain especially in the bowel spots where I’m tethered but now this past week and a half I’ve been in a very bad active flare it’s almost ER worthy and I make trips to the ER when my endo is unbearable and I get mechanically obstructed and have to stay in the hospital for a few days get IV meds and other special fluids until the flare subsides and I can eat again.

I’m worried that the Orlissa is not working and that since my body was having active flares with a very low amount of estrogen that the Orlissa maybe isn’t strong enough to stop the flare ups. I did read it can take 3-4 months to get over that cycle hump and feel long lasting relief. I saw some great results in the beginning but this flare is a 9/10 on the scale of bad flares I’ve had and I’m feeling pretty defeated and wishing my endo specialist at north western could cut it all out including my uterus and ovaries so I don’t have to do this anymore

Do I just need to let the medicine kick in and let it have more time to work or am I doomed to be in excruciating pain until I can get my third surgery. What’s your experience with the medicines ability to help with flares and pain?

I've already been on slinda, synarel, mirena in past. They want to check my bones to makw sure they're OK first for me to go on ryeqo. Mean while I have a constant fucking migraine that never completely goes away. I'm on IUD atm keep getting utis(was getting them even before the IUD). Incontinence snd they're suggesting ryeqo for symptoms management when I bleed im a psycho/banshee which I told them that. Mirena again they suggested I said no i would have come off it years ago for a fucking reason. I dnt want to be angry all the time. And my moods effect my family. So they've said keep IUD in for now. Yet the side effects for ryeqo say increased mood swings, depression, irritability ,MIGRAINES. I know I dont have to take it and I know it doesn't mean the side effects will come but I dont k ow if I want to risk it. Im sick of trying trwatments for migraines endo utis everything im sick of being sick I hate my body. The funny vision and all my other symptoms. Doctors dont fucking listen. I dont want to experience more depression than I already do. What you want to put me into medical menopause again like Im a fucking tap.

My MRI showed a 3.8 cm endometrioma on my right ovary and then a 10 x 7 mm lesion suspicious for deep endo on my left uterosacral ligament. I honestly didnt even know endo could show up like this on completely opposite sides. On top of that there is some fibrotic thickening and tethering mentioned too, so now I keep wondering if anyone here had a similar pattern and what they eventually found during surgery?

I have deep infiltrating endometriosis and 2 endometriomas. Lately I haven’t been experiencing pelvic pain, but I’m experiencing all kinds of other symptoms that I think are from the endometriosis. Constipation and digestive issues, nausea, bloating, fatigue, stabbing pains in my joints, aching legs, rectal pain. Can anyone relate?

Period literally didn’t hurt. I was waiting for be tortured as per usual and it didn’t happen

the only lifestyle change I did is take daily: 700mg omega 3’s (DHA + EPA), iron + c every other day, magnesium glycinate 1-2x a day and vitamin d daily. The iron before breakfast, the omegas and D after a meal and the magnesium after dinner. (Note I’m vitamin d deficient and critically low on ferritin because of my heavy periods. You may be too, check.)

Heavily suspect it was the high dose high quality omega 3’s + heavy / near total reduction in sunflower oil and omega 6 heavy food

I’ve been doing this for 2 months or so. Changes this month, last month I had no changes. Maybe it wasn’t this at all, maybe my body just farted itself correct this month and next month we’re back to pain. Hopefully not.

Hey, maybe this helps someone

Sadly I still bleed as much as always and still have all the endo I ever had but the worst part, the extreme pain, didn’t happen this month.

No promo but I use the Sunday naturals omega 3’s that have to be kept in the fridge after opening and are stored in a dark bottle with an antioxidant. Makes a big difference in anti inflammatory factor retained

Also, I eliminated sunflower oil from my diet due to high omega 6 balance. I switched to canola oil for baking and any time I need tasteless oil, and otherwise olive oil.

Note: this isn’t a substitute for medical advice or birth control / surgery. I will still go on BC to control my blood loss and probably get surgery and I suggest you follow your endo specialist’s advice. But its just nice to improve whatever I can

I’m 33 and had an emergency hysterectomy in 2023. I still have my ovaries, but my cervix was removed, so I have a vaginal cuff. I also have endometriosis and deal with chronic pelvic pain.
I’m also a virgin, which makes my situation a little more complicated.
It’s not because I’m waiting until marriage. I’ve just never met someone I felt comfortable enough with or had that kind of emotional connection with. I don’t want my first time to be with just anyone.
I’m hoping to start dating soon, and if I meet the right person, I really do want to experience intimacy. But I’m nervous. I’ve never had sex, and now I’m wondering how having a vaginal cuff and endometriosis might affect things. I’m scared it could be painful or that something could go wrong. I know I’ll need someone who’s patient and willing to take things slowly.
I’m also not sure how to explain all of this to a man without scaring him off. How do you casually tell someone you’re a virgin, you’ve had a hysterectomy, and sex might be painful? 😅 I don’t want to make it into this huge thing, but I also don’t want to pretend my circumstances are different than they are.
And then there’s the infertility part. Having my hysterectomy and losing the ability to carry my own children has been absolutely devastating. It’s something I’m still grieving, and I’m terrified of having to tell someone I’m dating that I won’t be able to give him biological children together in the traditional sense. I know having children is a dealbreaker for some men, and I completely understand that, but the thought of someone walking away because of something I never chose really hurts.
I want to be upfront about it because I don’t want to waste anyone’s time, including my own. But I also don’t feel like I should have to tell someone my entire medical history before they’ve even gotten to know me.
I guess I’m wondering if anyone has been in a similar situation. What was sex like after your hysterectomy, especially if you have endometriosis or a vaginal cuff? How did you explain everything to your partner? And for those who were single when they had their hysterectomy, how did you navigate dating and telling someone you couldn’t have children?
I want to believe I can still have a normal relationship, fall in love, and have a fulfilling sex life. I’m just scared that everything I’ve been through is going to make finding that harder than it already is.
Any advice or personal experiences would mean a lot. ❤️

Hi everyone! I’m 25 and looking for some advice, personal experiences, and honestly just some guidance because I’m feeling extremely lost and frustrated.

For about two years, I dealt with absolutely excruciating pelvic pain. It got to the point where I could barely get out of bed some days, and it was completely affecting my quality of life. I finally saw a gynecologist who was able to get me scheduled for laparoscopic surgery within a month, which I was incredibly grateful for because I was desperate for answers and relief.

In March 2026, I had laparoscopic surgery, and they found endometriosis on my bilateral uterosacral ligaments. They performed ablation, and I was diagnosed with Stage 1 endometriosis.

Following surgery, I was essentially pain-free for about five months. It genuinely felt like I had my life back.
Then August came around, and the pain slowly started returning. At first, it was occasional, but it progressively got worse. Now, in October, I’m back to experiencing pelvic pain every single day. Some days are worse than others, but it’s constant enough that it’s once again interfering with my everyday life. I take Aleve, which sometimes takes the edge off, but nothing really touches the pain.

I’ve started pelvic floor physical therapy, and I’m hoping that will eventually help, but right now I’m just exhausted.
I’ve also been doing a lot more research about endometriosis, particularly the difference between superficial endometriosis and DIE (deep infiltrating endometriosis). I was told mine was Stage 1, but I’m confused about how staging relates to the depth of the lesions, especially considering mine were found on the uterosacral ligaments. I’m not assuming I have DIE, but I’d really like to understand more about it and whether it’s something worth investigating.

I’m also starting to wonder whether ablation was the right approach for me. At the time, I honestly didn’t know much about the differences between ablation and excision. I was in so much pain that I just wanted someone to help me. I’ve since learned that excision is often considered the gold standard for surgically removing endometriosis, and I’m wondering if I should pursue a second opinion with an excision specialist.

The thought of needing another surgery only seven months after my first one is overwhelming, but the thought of continuing to live in this much pain is even worse.

A few things I’m hoping to hear from others about:

- Has anyone had endometriosis on their uterosacral ligaments? What were your symptoms, and did you experience pain returning after ablation?

- I’ve heard someone mention something about the Pouch of Douglas? What is that how would I get this checked?

- Has anyone been diagnosed with Stage 1 endometriosis but later found out they had deeper disease or additional lesions?

- For those who had ablation followed by excision, did you experience more lasting relief?

- Has pelvic floor PT helped anyone with severe daily pelvic pain?

- Are there any natural, holistic, or homeopathic remedies or other pain-management approaches that have genuinely helped you alongside medical treatment?

- Does anyone have recommendations for endometriosis excision specialists in Michigan or surrounding states?
I’m also willing to travel farther for the right doctor, including places like Mayo Clinic or Cleveland Clinic.

I’m located in Michigan, and from what I’ve found so far, there seem to be very limited options for specialists performing robotic excision surgery. I’m willing to travel a reasonable distance, or farther if necessary, because I really want to make sure I’m seeing someone experienced.

I’m just so frustrated. I’m 25 years old, and I feel like my life is being controlled by pain. I feel useless some days because there are things I want to do, places I want to go, and normal everyday activities that I struggle to get through. It’s debilitating, exhausting, and honestly makes me angry because I don’t know what else I’m supposed to do.

I don’t want to keep putting Band-Aids on the problem. I want to understand what’s happening in my body and make an informed decision about what comes next.
If you’ve been through anything similar, I’d genuinely appreciate hearing your experiences, recommendations, or even just what you wish you’d known earlier in your endometriosis journey.

Thank you to anyone who takes the time to read this. ❤️

Hi everyone! I’m feeling quite anxious and would really appreciate hearing from people who have experienced this.
Yesterday, I had a very intense pain in my lower abdomen on the right side during sex. The pain lasted around 15 minutes and gradually improved when I stopped moving and rested. About 6 hours later, I only felt discomfort when walking, and now the pain is gone, although I still feel some pressure in my pelvic area.
I have a history of ovarian cysts, so I’m worried about the possibility of ovarian torsion and, especially, ovarian necrosis.
For those who experienced torsion that resulted in a necrotic ovary:
How long did you have symptoms before receiving treatment?
Did your pain come and go, or did it remain constant?
Did you have any symptoms after the pain subsided?
How was the torsion diagnosed, and what was your overall experience?
I’m not looking for a diagnosis, just personal experiences from people who have been through something similar. Thank you so much!

I’m having a lot of fear around getting pregnant post op and I’m seeking advice/experiences of anyone who got pregnant for the first time post excision surgery.

To provide some context, I’ve had pretty severe medical anxiety for most of my life due to a high vagal tone that causes me to pass out during blood draws, IVs, and some shots. It goes hand and hand with the PTSD I have from an abusive childhood, so anything medical where I have no control over what’s happening to/in my body is kind of the perfect storm of chaos for me. There was even a time during my EMDR treatment for the PTSD that I felt like I didn’t ever want to do the whole pregnancy thing just for all the medical fear that I have. pregnancy felt like body horror to me. But I felt like I worked through a lot of that and decided I really wanted to start a family with my husband.

Fast forward to Jan of this year, when I met with my new obgyn to discuss how to prepare for pregnancy given my known fibroids and heavy, painful periods. She immediately suspected Endo, and I had my excision surgery this March. Stage 3 plus two large fibroids. My tubes were fine, despite some lesions, but my uterus took a lot of damage from the largest fibroid, and she told me I would have no option other than a C section when it came time to have a baby. This was a huge blow, because I was leaning toward vaginal birth.

The recovery from the surgery brought back so much of my medical/body fear. I checked my incisions compulsively, and to this day, 7 months later, I still go into pure panic if I feel a twinge in the healing scar tissue and muscle fascia. I wasn’t able to handle any of the BC options we tried to suppress my hormones during recovery (they made me literally insane), and I’m terrified the Endo will come back.

My body feels foreign to me, and unsafe. I’m terrified to get pregnant and to have to get my stomach cut open again for the c section (which they’re going to have to sedate me for because I start hyperventilating just thinking about it). Everyone is so dismissive when I bring up my fears, but I just don’t feel like pregnancy is something I should have to grit my teeth through. I’m genuinely considering adoption at this point, and I can’t help but feel insane for my fears.

Sorry for the long post, but I’m desperate for anyone who has had an even slightly similar experience or background and still did the whole pregnancy and specifically c section thing.

How was it for you and how did you get through it? Was it better or worse than you imagined? Are my fears justified?

I’ve been dealing with horrible, debilitating cramps/leg pain + other symptoms of possible endometriosis my whole life, but it has significantly increased this past year, and I’m finally trying to get answers. They diagnosed me with PMOS, and found what looks like adenomyosis during an ultrasound but haven’t confirmed really… anywho… the endometriosis specialist did not want to jump to surgery right away, so he put me on Gallifrey & sent me to pelvic floor therapy twice a week at a local pt place near me. I went to three sessions before I decided it was not a good fit, and I asked for a referral somewhere else.

The overall vibe of this physical therapy place was intense. Loud early 2000s clubbing music, which is usually my vibe, but when dealing with horrible pain and doing intimate exercises after a long day at work, I wasn’t really feeling it. My first visit, the owner asked me what was going on, and she basically told me we need to strengthen my pelvic floor by doing kegels and exercises. They never did an internal exam, and didn’t really explain kegels to me, or what pelvic floor therapy is really. The owner had me buy a set of kegels for $50 and said she would show me how to use them but never did, and now it’s too late to even return them. She had me doing squats, leg lifts, hip thrusts, sitting on this electric vibrating machine (?), and playing a kegel exercise game on an iPad that I’m still not 100% sure I was doing right. And I was never working with just one person in a session, one person would give me a direction, then walk away and talk to coworkers or another patient. Then someone else would come check on me and give me something new to do. There were multiple men around while I was doing some of these exercises and it lowkey made me uncomfortable just given the circumstances, but I can understand that not everyone has those feelings and it’s not an issue for some.

I have been in pain almost every night, considering the ER multiple times but worried about missing work, and overall just really not doing well. And I truly think the exercises were also triggering flare ups. I reached out to the specialist for pain management, and booked a sooner follow up appointment than we had originally set.

Yesterday I went to the new physical therapy place I was referred to. It’s an all female staff, small, very calm energy. The woman asked if I even knew what pelvic floor therapy was and I said no, and she took time to explain everything. She weighed out options, and made sense of the pain I was feeling. She did an internal exam, as well as external to see where I was feeling pain (the other place didn’t even do this, they just tested leg strength). She seemed surprised at the exercises I had told her they had me doing, and explained my body needs the opposite right now. She showed me different stretches that I need to do at home while also keeping it realistic to my schedule, and showed me some things I could purchase to help me, and stated doing kegels is NOT what I need to be focused on based on her exam. It was really refreshing to have someone actually explain and listen, while not also carrying out different conversations with coworkers, yelling over loud music, laughing and making jokes, and overall not being understanding of my situation.

I just wanted to rant/post my experience anonymously because I truly thought I was the problem at that other physical therapy place. I can genuinely now say that I am looking forward to this next session because I feel like this woman really wants to help, and I really need that right now.

Does anyone have similar pelvic floor therapy experiences? I’m curious. And if you’re still here, thanks for reading!

That's it. I love this page and I wanna make sure we're staying curious and interested in each other instead of projecting our own personal experiences in our respective locations onto each other. Each of our bodies are its own planet and each of our endometriosis experience is wildly individual. This didn't happen to me personally, it's something I've observed, and carry enough concern to post about for folks who come here as their primary source of support.

Hey everyone, I had excision surgery on Friday (16/10) and had my ovaries suspended. I have some pretty nasty bruising on my right side around the stitch which in hospital did have my dressing fill with blood. Since returning home yesterday afternoon I’ve had that same dressing need changing 3/4 times due to excessive leaking and wound drainage. The liquid is not smelly, mostly a mix of clear liquid and blood, GAU is closed until morning but will ring them first thing if no change. Just wondering if anyone has had a similar experience with the stitches. All dressings and wound changes have been photographed

I’m currently in Massachusetts and have wanted to move to Florida for the longest time. My husband and I have debated NC/FL and we just can’t help but feel like Florida’s been the place for us. We’ve grown up here all our lives and still never wanted to fully settle in New England.

But this year’s finally been the first year I started receiving answers to my health after 19yrs trying and just 10 days ago, I had my first laparascopic excision surgery and was diagnosed with Endo. I had Adeno diagnosed via transvaginal ultrasound/MRI earlier this year.

My question is — have any of you had a hard time finding a specialist in Florida that you trust and that truly does this surgery the majority of the month? Or do any of you travel out of state for this procedure/treatment?

I have toggled with the idea of traveling back and forth if needed but with this disease being so complex, I’m nervous of having to start all over again with my healthcare team after all this time searching for someone to take me seriously… Granted, my surgeon is currently moving to NYC to start a new position as a director and I still plan on driving the 3-4hrs one way to be his patient while I’m still living in MA but Florida to NYC financially feels a little tougher.

Any advice would be so appreciated 🌻💛

So I'm 6 weeks into my current flare up and I had last week off work because I was so exhausted. I pretty much slept the entire time and I started to feel better to the point it hadn't changed but it felt mentally manageable.

Then I had three days with my toddler (I have Fridays off).

Is it bad that I'm considering taking more days off work because I may have over done it the last three days with my son?

Not that anyone at work knows but I went to a farm, soft play and football. And then I'm claiming I can't sit in a chair in my dining room half assing my job in my pjs with a hot water bottle.

Is it bad that I want more days off after so I can catch up on everything that's turned to chaos because of this flare up?

So im 13f and I've been trying to get a diagnosed for about a year and a half now im diagnosed with ibs, pmdd, and general chronic pelvic pain i also have a Retroverted Uterus i struggled with horrible peiord like pain even before getting my period from the start like my first period they have been exsrealmly heavy painful and long my longest was 7 weeks I had to be put on clotting medication to stop it I've been on about 6 different birth controls and even a iud that I had taken out only maybe 8 months later because it was affecting me to much I've been to about 2 specialists and idk how many gynos both specialists have given me different answers that never added up the first said he thinks I have it then he started blaming everything on ibs as soon as I brought up surgery the second I waited months for just for her to not be much help my symptoms are if anyone could read over and give opinions on sometimes im not fully sure bc sometimes the symptoms disappear for a bit then come back 😭

1. Blatter pain

2. Cramps when I poop or pee

3. Super painful period cramps

4. Birth control pills don't help

5. Nausea 24/7

6. Back pain

7. Pain that radiats around body

8. Painfull bloating

9. Dizziness

10. Always Constipated or diarrhea

11. Iud doesn't fully help

12. Leg pain

13. Rectel bleeding

14. Ibs like symptoms

15. Ovulation pain

16. Most symptoms look like bowel endometriosis

17. Pain gets worse during ovulation until period

18. Diarrhea during ovulation

19. Bloating gets worse throughout the day

20. Pain feels like tattoo gun or twisting all my organs at once

21. Pain when passing gas

22. Uti symptoms without a uti

23. Most periods last 2 weeks to a month

24. Symptoms randomly stop then come back

25. Chronic Yeast infections

26. Right before my period and during it have difficulty peeing sometimes pushing for over 5 minutes

I get all brain foggy, rapid heart beat, sweaty, nausea, dizzy and lightenedness. I take an allergy pill and it all feels better about 20-30 minutes later?

I also have PCOS.

Im just tired of feeling like shit all the time.

Hey folks. For years now I’ve been experiencing terrible ibs-like symptoms, enough to get a diagnosis. Eventually, since a lot of doctors in my area just kind of leave it there, we stumbled upon the research that a good chunk of women with ibs symptoms have endo. I’ve always had painful periods, and a lot of my newer symptoms- chronic fatigue, sudden intolerance to dairy, need to eat low inflammatory foods, bowel issues, bladder sensitivity- line up. Honestly I’m desperate to have the lap find endo and for it to be easily treatable and for that to fix my problems, since currently I’m homebound due to these symptoms.

While I know I must do this surgery, I’m very nervous about it. I’ve only done wisdom teeth surgery as an adult, and that’s a whole different level of lack of privacy and intrusiveness, plus I have some fear of medical things due to experiencing some things as a teen. Are the any tips you all have for after, or your own experiences?

In the last six months, the symptoms I've been having that point potentially to endo have ramped up significantly. I've recently gone to see an gynecologist for the first time and am due to go in this week for the results of a pelvic ultrasound, the second I've had.
I'm honestly expecting they'll say as they did the first time that they don't see anything on the ultrasound, which the gynecologist said can be the case a lot of the time even if you do have endo, and that I'd need laparoscopic surgery to know for sure.
She also made it sound particularly urgent that I consider it if the symptoms are getting worse, and have been progressively doing so for a couple of years at this point.
But just how urgent is it? The only reason I even say that is because wait times for surgeries such as laparoscopy can be far out there, and I have to consider if I'll need to go to a specialist or something for that matter, but I'm racing the clock until my insurance runs out at the end of the year.
Is this something I should be scared could progress to a threatening degree quickly if I'm unable to get laparoscopic surgery for a prolonged period of time?

This is the only picture that was included in notes from my laparoscopic surgery. It wasn’t labeled in any way. Surgery notes state that “There were small areas of endometriosis present on the right posterior broad ligament and right uterosacral.”

I’m usually pretty good about being able to see things, but with absolutely no context of a grainy picture it’s tricky. I have my suspicions, but what to see what other people think.

I am recovering from surgery. I have a 6cm cyst removed from right ovary and a bunch of endo lesions removed. We've struggled with infertility for 2.5 years and I'm praying with this all removed we will succeed. Curious how long after surgery people tried to conceive or got pregnant?

Is anyone else feeling this way, even while undergoing treatment?

Since I received my endometriosis diagnosis, I've been feeling incredibly tired even when I haven't done anything during the day. It's an overwhelming fatigue; I fall asleep anywhere, and I wake up extremely tired, as if I haven't slept in days.I'm taking so much vitamins, vitamin B12, vitamin D, omega-3, but even so, it seems to have gotten much worse; there are days when I cry from exhaustion.

I'm studying for exams, and it's hindering me and drastically affecting my progress.

I was diagnosed with a 10cm endo cyst nearly 3 yrs ago. I tried the hormonal meds instead of surgery nd after 2 years of meds, my cyst is nearly gone or gone ig?..one scan didn't pick anything whereas other showed 0.3 something. I'm happy that it worked nd am now continuing the meds to avoid a possible reoccurance, only because I don't have any major side effects due to bc. I still get painful cramps sometimes at night randomly tho.

Now, I've been seeing new info on Endo being found in other body parts, in brain causing Epilepsy etc. and I'm kinda freaking out!? Every new piece of info I come across makes me wonder if the endo could have spread somewhere else without me knowing 😭 Like, what if something develops in another part of my body and I don't notice it until it becomes serious? 🙆‍♀️

I don't want to stop educating myself about this condition but at the same time, I don't want to end up constantly worrying about every possible thing that could go wrong! It's like I want to stay informed, but I also don't want to spiral every time I read something new.

Am I the only one who feels this way? How do you guys keep yourselves informed about endo without letting the anxiety get to you?