u/sweetcheeksbaby

Hi, I have been lurking in this community for a few months, following my diagnosis via ultrasound, and it’s been both comforting and terrifying.

I had my son in October 2024 and developed left sided, deep pelvic pain starting at 6 months postpartum. It kept getting chalked up to postpartum body changes and it wasn’t disrupting my life so I carried on. 4 months ago after intercourse with my husband it became worse and constant. It feels like a hot knife being twisted in, what I thought, was my ovary. I had a doctor who listened and who suspected endo so queue a sliding study ultrasound (negative but showed focal adeno) and got scheduled for a lap. My lap was still pretty devastating as I woke up to the update of “we didn’t find anything in your pelvis so we didn’t take any biopsies and we didn’t do an HSG as your fallopian tubes and uterus looked okay.” I cried for literally 2 days. Since then I have continued to live with daily pain that limits my life. I’ve basically been offered birth control, pain meds, and rest. I saw a specialist in pelvic pain who ordered an MRI (this upcomingThursday) but has already said she doesn’t believe in non-visible lesions for endo -which from what I’ve researched seems ridiculous. I’ve been told my options for adeno is Lupron or hysterectomy. She does not believe in pain medication for adenomyosis outside of Tylenol and Motrin. Now I’m only 34 and a second child has been still on the table so a hysterectomy is a no for me currently. I’m also not keen on medical menopause as I had severe (like hospitalized) postpartum depression so any tampering with my hormones is not an easy risk for me to take. Are these really my only options? Is women’s healthcare really this sparse?

My current symptoms are daily pain/heaviness/pulling, pain with bowel movements, vaginal bleeding with bowel movements, pain with gas, pain with sex (penetrative or just orgasms), worsening pain with walking/standing, irregular bleeding (currently on oral birth control), back pain/sciatica, inability to lose weight, insane fatigue, hot flashes/night sweats. This doc has literally said I should be resting on the couch with a heating pad to treat my symptoms. How is that any quality of life, aside from the fact it is not possible as I need to work and take care of my child.

Should I be seeking a second opinion? My gut tells me there’s also endo in there too and my first surgeon was not an endo specialist. It doesn’t help that these appointments are booked out months and leave me struggling in the meantime. Anyone been at this point in the journey that can point me to my next step?

Sorry for the wall of text. Im looking for some insight or other’s experiences. Around march of this year, I developed lower left pelvic pain. Had an transvaginal ultrasound that showed a small cyst on my right ovary but otherwise normal. I saw my trusted OB in may as the pain was becoming more frequent and painful. It feels like a pulling/stabbing pain over my left ovary. I was started on stronger birth control and told to follow up if things persists. All of June, I developed odd symptoms - extreme fatigue, near constant dull pain on my left, and pain with sex. I went back to my OB suggested possible endometriosis and ordered a specialized transvaginal ultrasound but the first appointment was in August.

The weekend of 4th of July, the pain became severe with vaginal bleeding and I ended up in the ER twice. CT and ultrasound normal. I saw my OB again who started me on pain meds and suggested a lap to get a clearer look - but wanted to try to make it to the ultrasound to check for DIE. Between the 4th of July and August 12th, I’ve become non functional from the pain. Walking or prolonged periods of standing causes it to flare. Bowel movements have become excruciatingly painful. Intermittent bleeding with severe cramps. Frequent urination and often feeling I can’t completely empty my bladder. I even ended up in the ER two additional times with negative workup outside of CT showing bladder inflammation without a UTI.

I got scheduled for surgery (yesterday 8/14) and had to sliding study ultrasound on the 12th. Ultrasound revealed some focal andeomyosis but no evidence of DIE. When I woke up from surgery my OB told me no endo was found. I’m devastated. I obviously don’t want endo but I do want an answer. Now I’m recovering from surgery and feel like I’m back at square one. The surgical pain is actually quite minimal, just soreness, but the left sided pelvic pain is 10x worse (idk how that’s even possible honestly).

Can anyone relate to this? Where do I go from here? It sounds like the only treatment for andeo is a hysterectomy and I would like to try it preserve my fertility bc I’m undecided on having a second baby (first baby was in 2024). Could andeo be causing this severe left sided pain? It is really possible to have andeo with no endo found? Did my surgeon just miss the endo?

TLDR: developed left sided pelvic pain in march 2024 that has gradually worsened to the point of extreme pain all the time. Ultrasound showed focal andeomyosis but lap didn’t find any endo. Lower left pain is now worse and I feel like I’m back at square one.