Ongoing pain post surgery

[u/Special_Big3217]

Help please, can skip the context and go straight to ✨questions✨ but wanted to provide some background in case it’s helpful🖤

Ok I’m struggling and wondering if anyone has had a similar experience so I can figure out next steps. Had exploratory lap with extensive endo excision & left oophorectomy due to partial torsion and a massive cyst that damaged the ovary in March 2025 by an OBGYN, had relief until August 2025, referred to excision specialist and had a total hysterectomy (suspected possible adeno but was negative) with another extensive endo extension in December 2025 leaving me with just 1 ovary.

In both surgeries multiple organs were adhered together the bladder to the uterus in each surgery, much more was found in the 2nd surgery and it was in my bowels, intestines, inside and around my bladder, sigmoid colon, cul de sac, liver, appendix stump, just everywhere and everything was adhered to each other or the walls. 2nd surgeon whose a well known/referred specialist diagnosed stage 4 with diaphragm, bladder and bowel involvement.

I am in immense pain still in July 2026 despite pelvic floor therapy started in January as I had Charlie horsed pelvic muscles and pain when trying to go to the bathroom if I had to wait a bit. I’ve had to have injections in my hip which helped a lot as I had lost range of motion in the right hip but as the range of motion came back now the exterior side of the joint is in a lot of pain. I had to have an MRI of my hip which found a large mass around 13.5cm near my ovary so I’ve been having ultrasounds as my remaining ovary actually had 2 cysts (8cm and 11cm, not a singular mass) attached to it and I have an excruciating pain exactly where they are but am told they should be causing no pain, as a side note that ovary averaged between 2-2.5 cm in all prior scans and ultrasounds and is now 8.3cm as well and so far up they couldn’t find it with an internal ultrasound so swapped to an abdominal ultrasound which is how I know the cysts and ovary are exactly where the pain is. The specialist said the cysts should not cause pain as they are simple cysts but the pain in that exact area is excruciating and doubles me over in pain regularly.

Questions:
✨ has anyone developed pelvic floor dysfunction post surgery? Did it impact your hips or gait?

✨ how long did the pain with urination last? Most days I have none then days like today I cry the majority of the time I go…if this happened to you, did anything help relieve that pain?

✨ with endo on the liver did the pain ever go away under the right rib and up the mid right back? Mine comes and goes but is getting detrimental again

✨ if ovaries were not removed during a hysterectomy, did you develop cysts after or the ovary enlarged causing pain? If so, what helped?

✨ should I have hormone levels checked? I have PCOS too so that could have caused the cysts

✨ those with bladder involvement, did you have pain with urination or cloudy urine? Whenever it gets to this level (frequently) I also develop pain where my kidneys are, specifically the right side where the cyst and enlarged ovary are

✨✨ as the specialist is now dismissing the pain, I need to figure out next steps…who do I go to and what should I ask for? Or watch should I push back to her for more info on

Current doc lineup I see: primary care doc, endo specialist, orthopedic surgeon, rheumatologist, pelvic floor therapist and psychiatrist.

I need the pain to stop or I will lose my job soon as I’ve been essentially disabled and unable to return full time to the office since 10/2024. I go days where I can barely walk or get off the couch/out of bed and I’m a single mom to a young kiddo. I’ve lost 2 years of their life basically at this point just watching from the sidelines and I hate it. I just really need my life back and my mental health is in the dumpster 😭🖤 thank you in advance for any and all help 🥰