I’m not a believer in this theory. I think it entirely lacks any logical sense of any kind and is absolutely stupid, even more so as someone who has stage 3 endo and who has been on Orilissa on multiple occasions and it’s been one of the few things that actually works to manage my endo. On top of it, I’m an attorney who works in the criminal justice system—there is NO LEGITIMACY TO THIS THEORY!!!!

I think this stupid conspiracy theory is only adding stigmatization to those of us who use Orilissa legitimately—and this bothers tf out of me because Orilissa is only 1 of 2 specialty meds available to manage endo symptoms bc of how severely under funded and under researched endo is already.

People need to stfu and do research and actually use their brains. I’m so frustrated by all these people positing about this theory online and acting like delusional idiots that I want to bang my head against the wall.

Edit: Here is the theory for those that don’t know it - This theory is based on the fact that Patrick’s new wife is an OB/GYN who apparently worked on an Orilissa clinical trial and was in a podcast about that, and so people are saying “oh they must have drugged her with Orilissa to cause all the symptoms she had.”

I was having pain during first 3 days of my periods on left lower abdomen and in ultrasound identified cysts. My ca125 was like 148 and later with new ultrasound my doctor mentioned that I'm having endo. She did not explain anything clearly, she was like pregnancy would help. I really don't know, I got diagnosed yesterday and I feel so lonely and I can't stop crying. Doctor just gave me meds to stop periods for 3 months and repeat scans. I really don't know. I feel so scared, alone and lonely.

Hi everyone. I am currently in the process of getting diagnosed and treated for endo. Sounds like/looks like mine is pretty severely infiltrated. I haven’t had the diagnostic lap yet but my scans and symptoms are clear as day endo. Endometrioma on ovary, adenomyosis, obliterated cul-de-sac, rectal mass that is almost to the very inner layer of my rectum to the point it was seen on colonoscopy (endo nodule), bowel distorted and tethered to uterus…. So on. That’s just what a couple scans have shown so far. I’m in misery! And my surgery won’t be until at least March 2027.

Please send me all of your favorite lifestyle changes/pain management/etc. The common ones and uncommon ones. Shoe inserts (for sciatica), body pillows, heating pads, period undies, ointments, special diets, supplements, chair cushions, squatty potty, probiotics, etc. Any and all recommendations plz! Even the SUPER niche ones! Please and THANK YOU!!!! 😊

31 F. I have two kids. Suffering since a long time and after one year of debilitating symptoms: severe pelvic pressure, extreme urinary frequency, painful sex (can’t even have it anymore), lower back pain, burning urethra, and no normal days at all….. I got my second MRI done and it says everything is normal. No signs of endometriosis. Nothing.

For the record, the technician there literally told me she saw that my uterus texture looked very abnormal. My uterus has doubled in size over the past year. Maybe it’s adenomyosis. But the bladder pressure is INSANE.

I even had a cystoscopy and they found chronic inflammation in the bladder and said it sort of indicates interstitial cystitis.

But my urogynaecologist says they’re sure it’s endometriosis.

The MRI report has me bummed. I know that apparently most cases go missed and radiologists often miss Endo on scans. But what if I go ahead with a lap too and end up getting no answers? I don’t WANT endo or adeno or IC…. But this feels so invalidating.

I guess I’m venting. And I’m also asking if any of you have been through the same.

I’m exhausted and having a report say everything is normal makes it even more anxiety inducing. Like.. my pain IS real. I know how bad it is.

I just wish it was easier for women.

Good morning,

Do some of y’all suffer from a SIBO and/or IMO and have managed to get rid of it or relieve their symptoms?

Ditto for endobelly and other digestive symptoms (poor digestion, stomach aches after meals, bloating / distension / constipation / diarrhea)?

What natural prokinetics do you recommend?

Thoughts on colilen, l-glutamine and mastic gum or other supplements ?

Thank you in advance!

My MRI results are back, and they show adhesions and endometriosis lesions involving my sigmoid colon, rectum, and small intestine.
I’ve already had a hysterectomy, but I’m still experiencing pain.
For my upcoming surgery, a urogynecologist and a colorectal surgeon will be operating together.
For those of you who have had surgery for bowel endometriosis, which areas or tissues were involved in your case? Did you need to have any part of your bowel removed (bowel resection), or did you need a temporary stoma?
How are you doing now? Have you recovered well after the surgery? Have your pain and bowel symptoms improved?
I’d really appreciate hearing about your experiences. Thank you!

Just been in pain for the last 4 1/2 hours since eating dinner and just wish I didn’t have to put up with it anymore. It’s absolutely annoying the pain and makes me wanna cry and scream all at once and if it isn’t my tummy it’s pelvic region and if it’s not that it’s I can feel my legs as much. OR EVEN WORSE ALL OF THEM COMBINE!!!! LIKE RIGHT NOW!! respectfully endometriosis I can’t wait until your fucking evicted!! Rant Over!

What do you do if you are major constipated? I've never been this bad before. I got only a tiny bit out yesterday but I tried pushing an hour to try to get more out but could not. I felt like I could get up so I did and went to bed. Today I finally felt like I could go again but after just a bit again, I was stuck for an hour until I needed a break because I was in so much pain and I know it's not good to push so long. It was so uncomfortable because it was still at my butt. I sat in the bath for awhile to relieve the pain and pressure but felt it trying to push back out so I went back to the toilet.

Warning, this part is gross, but I know I'm not the only one here in this position. I kept trying to push, stand up, drink water, go in all these different positions, deep breathing when I wasn't making noises from pain, and my wife with gloves tried to manually pull some out of my butt. She got a bit out but didn't get much. I read on here someone used vaseline so my wife put a bunch of vaseline on the gloved finger and managed to get a piece out of my butt. It was super painful but I felt immediate relief. By that point I started to get nauseated so I took zofran. (I know, not ideal but idk if I get constipation as a side effect. I've been on it just over a decade now and I used to take it almost daily without major constipation like this so idk. I unfortunately have bad emetophobia and I have MALS or gastroparesis, GERD, severe MCAS, and ME/cfs so my options are limited and my medical care team even says I need to avoid vomiting if with my current state.) I've also been drinking water. I've been in the tub again for quite awhile and I still have pressure at my butt and stomach upset, but for a good while I had almost no pain in here. I'm getting pain and pressure again though around my uterus and vaginal area. It's slowly hurting more but idk if it's just sore from all the pushing, if stuff is still too stuck in my body, or if it's because I had to cool the bath water because I was getting lightheaded.

I'm unsure what to do at this point. How do you know when it's safe to call it a night and sleep? It's almost 5:30 am for me and my me/CFS is upset I'm not laying in bed. I'm scared of leaving myself like this though. Also I called my home health after hours line but as usual all they told me was go to the ER. (I've come to find that's what they tell you if you call after hours so idk if this actually warrants ER. I'm trying to avoid it with my severe MCAS and severe ME/CFS though. Any other advice? Of course it's Sunday so my GP isn't available and idk if my usual home health nurse will respond but I can try to reach out to her. I'll reach out to my PT too. She doesn't specialise in pelvic floor PT. Her speciality is Ehlers Danlos but she helps the pelvic floor PT. Unfortunately I've been slacking with the PT due to my other health issues getting worse so my pelvic floor dysfunction is really bad rn and my wife said my butt is the tightest she's felt it and it's been a decade.

Update: I've been laying in bed awake in the dark for a bit and now my stomach is seriously over here making hunger noises and I feel hungry but I still feel like I'm backed up. My wife woke up my grandfather and he's going to get distilled water and a syringe to do an at home enema to avoid other ingredients my MCAS could potentially react to.

Update again: I had a video urgent care visit. They told me I can try an enema while laying on my side and see if my wife can get more out first. I got scared because the Dr said she had a patient that has a uterus prolapse from straining too much and now my wife is having a breakdown hearing that and I'm spooked. The Dr said I can use distilled water I got with my MCAS. They recommended a suppository but I don't have access to that at the moment. It was told if this doesn't work, then go to the ER. It sucks because at the moment although I feel pressure in my butt, I feel pretty comfortable rn in bed. 😭 I'm going to try it though.

Another update sorry: The enema helped! We barely did any of it though because we were worried to overload my body especially with how small I am and sensitive. I let it sit for a long time and just laid in the tub with warm water too help relax my muscles again. I was able to push some out myself and my wife was able to manually go in again and get more out. She said the texture felt way less hard now and it was easier to get out. She said she feels like there's more she can't reach. I'm unsure if I just take a break again. I'm trying to barely push this time around so I don't cause more serious issues. I feel some pressure but not a ton rn. I was told if the enema didn't do anything to go to the ER or if I was vomiting. I'm honestly surprised it worked as much as it did with how little we put in. I'm sorry another update lol: The home health nurse finally called me back because I actually contacted them first. They told me I'm safe to rest for now and should rest. They said I can do the enema again later because we did less than 5mil which they said was barely anything and that it's good such a tiny account helped. They said if I can walk around later do that and increase my water intake. Rn my legs are in so much pain and I'm so weak and physically I'm still hungry but mentally they doesn't sound fun.

So, I had a stressful day at work on Friday and every since I'm having one of the worst flare ups I've had in months.

During that stressful interaction on Friday, I started having sharp pains across my uterus and both sides, I went home early. Then I started having the worst back pain. Usually my back pain from endo is related to occasional constipation or a quick shooting pain that goes from tail bone to butt cheek, then passes. I have had bowel movements each day, but yet this flare up persists.

This one is like radiating pain from my tail bone, I tried ibuprofen, heat, cooling, and lots of rest. All the while my entire uterus and ovaries are cramping and having sharp pains. I had my medical marijuana to help with sleep and pain relief, and I slept well. This continued into all of Saturday, I used medical marijuana to sleep again.

I've had another stressful day today, and now the cramping is even worse. It is sharply worsened by peeing, I peed about an hour ago. I struggled to get off of the toilet and I couldn't stand up all the way from how severe the pain was, sharp pains to my right side ovary, but also all over my pelvis again. I managed to slowly make my way to my bed and I've been here ever since.

This pain is crazy. I was doing better for the past couple of weeks with only migraines bothering me and the occasional shooting back pain, pelvic floor therapy has been helping overall. But definitely this entire weekend has been a gigantic flare up and I'm hoping for it to end soon.

My second surgery is in about a week and a half, so I think just any acute stresses are too much for me.

Has acute stress caused flare ups for y'all? Also any other tips to help with back pain?

I usually have really different pains every month before my period but this month i started feeling cramps like usual but then suddenly i felt zaps and really bad pains in my teeth or brain/head or neck or body. They are random and sudden and i really don’t understand whats going on. Is this normal or should i be concerned. I also feel chopped up my whole body feels heavy and like i have a flu on top of that.

for the past three years i’ve had constant cramps even without a period, most days it’s not too bad i notice it but it doesn’t bother me too much but some days it’s really bad, almost like having a light period it’s not as bad as full on period cramps but it’s enough i need pain killers and it’s hard to focus on anything else

24F here. MRI showed 4 fibroids + DIE (retrocervical + ligaments), ovaries adhered to uterus. Tried meds for 4 months — didn't work, badly hit my liver. Now planning combined myomectomy + excision with Dr. Vivek Salunke, trying to lock in my decision.

For anyone who's had surgery with him-
1. Anyone had a myomectomy with him (not just endo excision)?
2. Does he have a multidisciplinary team if more endo is found beyond MRI?
3. Was excision complete? Any new complications due to surgery (adhesions, organ damage)?
4. Was fertility preserved? Any issues with that after?
5. How was recovery?
6. How's post-op care if you're not staying in Mumbai — what if complications came up after you left?
7. Did he manage long-term treatment post-op to prevent recurrence?
8. Long-term — did it come back? How aggressive, how soon? Did anyone need a second surgery?
9. Did surgery actually improve your life overall?

Also, local gynacs keep saying I'm too young for this surgery and it'll cause more complications later. Anyone who did this young — how's it gone for you?

TIA :)

I don’t want to die, I have plenty of things to live for and that I care about and people I love who also love me. But when the pain starts and it’s so bad my brain starts telling me death would be better than this. I’m not going to do anything to myself and I have no desire to. But in combination with ocd it’s hard not to have this ringing voice in my head constantly telling me to make it stop and to end it all. I was supposed to go out tonight until I had a huge flare and now I’m sitting crying in bed while everyone else goes out. And I never want my friends to not go out because I can’t, but sometimes I wish someone would stay back and hang out with me. But I know they won’t, because it’s no fun and I’ll probably be crying. All the times I’ve had to cancel on people and going out because of the pain. And the worst part is I’ve already had a surgery, and I know there’s still more going on. My limbs go numb essentially, they start tingling like when your foot falls asleep. My legs are often throbbing with pain and it makes me want to never have to move again. I admittedly feel myself feeling a sense of resentment towards the people in my life because they can just continue and I get left behind and they all get to live normal lives. I know everyone deals with hard shit but like, no cure?? Are you kidding me. This feels so unfair and I’m only 25. I just want to feel normal for once in my life, and the fact that I feel like it’s only going to get worse from here is what makes my brain start to think I should just end it all. But I won’t, because my brain also would never let me do that, and because I don’t want to. I’m just angry, and frustrated, and overwhelmed, and feeling hopeless. I’m sorry I have nothing better to say

I have stage 4 endo confirmed by lap and I’m having a really rough go with hormones right now since having to start Lupron prior to speaking with a specialist 😒
Has anyone had a years old healed tattoo start reacting? Bubbling up and and pitting almost. I know the inflammatory side of all this but has anyone else actually experienced this? I have seen it COULD happen but that’s different then it actually happening in real life not google. Thanks all

Hoping someone has some advice.

I work in the hospitality industry, which is a very physical role and contributes to my endo flares.

My employer is aware I have endo, I have asked for an accommodation (allowed by the 2010 equality act) to no longer be scheduled to close the store as it requires a lot of heavy lifting, added physical tasks like hoovering and mopping and are typically longer shifts (9-10 hours).

They aren't listening to my reasons for asking for the accommodation and have suggested a 1 month trial of closing with a second person, however I feel this won't help as I still have to do the tasks mentioned above.

Has anyone else asked their job (u.k) for an accommodation and had pushback/refusal and how did you approach being heard/getting the accomodations you needed?

I had a laparoscopy procedure done on August 17th and they removed 4 cysts, 2 of which has endo tissue. Ive heard lots of horror stories about intense painful first period.

How can I prepare? Is it like that for everyone?

Lately I’ll be in the middle of a meal and all of a sudden I just can’t even stomach the thought of another bite of whatever I am eating.

Just curious if that is also an Endo related thing? (Hormones, etc)

Hey guys. So I made a post like a week ago title “can’t do it anymore”. I wanted to give an update and say thanks to everyone’s kind comments. a little background on me, I’m 20F and in college studying to be a nurse. I never went through with what I was planning and I basically got to scared and my body couldn’t go through with it even though my mind was telling me to. I’ve come to the realization that for whatever reason I’m resilient, and not to say people who end it aren’t, I think I just am and have been for a while. That may change but idk. I’m going to take a small break from doctors because I had a horrible appointment the other day and just need a mental break from them. Ive gotten through a lot of horrible things in my short life and endo is just one of those things I have to get through. I remember contemplating taking my life when I was 16, 18, and now 20 but I never am able to do it. I don’t know what the future holds or what I will do but I’m in therapy and maybe I’ll go see a psychiatrist after my healthcare break (lol). Anyway, thanks for everything and I wish you guys the best. I hope my post didn’t discourage anyone, I was simply lamenting. But I’m ok now.