u/Old_Tomorrow6141

Does anyone else here have endometriosis? Mine is stage 4 and when the surgeon went in, she saw all my organs were stuck together from scar tissue. She released some of them and removed cysts, but an MRI and a lot of pain flairs suggest things have already reattached less than a year post - op. I was VERY active prior to getting sick. I’ve not gained about 30 lbs most of which I think is fluid retention in my abdomen. I am in PT and see an LMT for lymph flow. I’m looking into block therapy to try to release some of that tension there. It swells very easily. Doctors have been of little to no help unfortunately. Has anyone else dealt with this and have any techniques they’ve tried that have been helpful?

I suspect that’s what hurts me so bad after I’ve already had surgery for stage 4. I think my adhesions hurt worse than my endo did. Are there any endo surgeons that can help prevent the reoccurrence of adhesions for those of us really prone to them? I can’t live like this anymore. My excision was March 2025.

What was the experience like? Any downsides to be aware of?

I’m one year post-op excision from Mayo Clinic for stage 4 endo. I was a former triathlete and now can’t move without have extreme abdominal swelling and pain. How do you all move? Work? Workout? My stomach is so distended by the end of the day that I can barely function. I have been in PT for over a year, get weekly abdominal massages and just don’t know what to do.

I have developed really painful adhesions a little over a year post op, stage 4. There’s a lot of pulling, feels like mostly intestinal. I lost my job. S** is painful again probably cause an MRI showed the bladder, uterus, and rectum reattached. Thankfully I no longer have a period. But how are yall dealing with this ongoing pain? What started as just period pain is 24/7 now as I approach 40. Also, the fatigue is absolutely insane and sometimes I feel so short of breath I can barely think. Thru swear it wasn’t on my lungs, but I’m not so confident. I’ve had numerous kin collapses, have a lot of granulomas, and severe SVT episodes.

Pretty severe Endo including on my bowels. Torsioned my ovary. I feel like I’m not constantly on the verge of a SBO. Any advice on what might help?

Can someone explain to me what I can expect with this? I see three days on my schedule. I’ve had severe Gastro pain since an endometriosis surgery. It was growing all over my bowels so that might have something to do with it. I’m having just pretty bad constipation since the surgery too. I also have pots and I’m really worried that I’m gonna have a reaction to whatever tracer is in the study. I’ve had strange reactions to so many different things, including gadolinium from MRIs. And a cardiac response to CT contrast. Basically just a lot of things send me into SVT. Is this safe? Is it worth the cancer risk? I keep reading about how there’s really not much that can even be done for slow motility, so I’m curious as to why we are testing it.

Has anyone else noticed that a lot of ass hole doctors come into the comments sections just to dismiss pain yet again? I feel like the only doctors who have ever believed me are the ones that have seen me crawl on ER floors sweating bullets and puking my guts out, and with HR & BP through the roof. But like… going to see a PCP or specialist outside of that 10/10 pain, they just don’t get it. And I hate that when I try to get help here, it seems they’re just lurking behind their private accounts doing more damage than they already do in person.

Mostly bowel pain for me, from endometriosis. I feel like I’m losing all memory from my former life.

Can’t find help from doctors. My surgery was a year ago and pain keeps getting worse. Pelvic floor PT is at a loss. Does anyone have any recs? I truly feel like I could die from this. It’s worse pain than pre-surgery. CTs, USs, and MRIs are all relatively normal.

Sometimes I think I just have a horrendous case of endo. I had surgery March 2025 and am in worse pain now than before. It was stage 4 and MRIs show everything is already stuck back together. I think it’s the adhesions themselves causing pain.

I tend to always wake up at 2am from pain, and usually can’t fall back asleep. Can’t have sex due to pain. Can’t workout due to pain. (Was a former triathlete so this has been particularly challenging.) I can’t get to my pottery wheel cause hinging at the waist is excruciating. Can’t bike due to pain hinging at the waist. I can no longer work cause my whole career was labor-based. Thankfully, I can somewhat decently keep my house chores in order, if I take a lot of breaks. Gardening has been passed off to my husband though, and anything else that requires any heavy lifting and movement. Even yoga hurts. Movement in general is so oddly painful; I don’t understand.

I’ve been in pelvic floor PT for over a year now. My bowels hurt 24/7. I just don’t know what else to do. I had excision surgery at Mayo Clinic. My surgeon seems phenomenal so I think this is a me problem, not a surgeon problem. I take progesterone to avoid a cycle.

Is this just it? Is this just my new reality? Please be blunt with me. I never read about other peoples experiences being this bad. It doesn’t seem normal.

This CT scan is a few months after excision surgery.

“REPRODUCTIVE ORGANS/GENITALIA:

Anteverted uterus. Left ovary is tethered to left uterine fundus and small bowel (5/623).

Right ovary is tethered to posterior right uterine body and small bowel (5/67).

Previously described endometriomas are not conspicuous by CT.”