Severe bowel endo symptoms returning after surgery - what non-surgical treatments helped you avoid another lap?!
Hey guys. Long post, but please hear me out. This is my first time posting here. It’s 4 am and I’m currently on the floor crying in pain.
I’m exactly 1 year out from my first laparoscopy to officially diagnose endometriosis after years of worsening symptoms. My doctor said I had a moderate case with lesions on my bowels, ovaries, pelvic walls, and part of my bowel adhered to my uterus. Surprisingly, she said my bladder was clear, which shocked me because I’ve had horrible urinary symptoms for years.
She was a regular OBGYN, not an endo specialist, and did a mix of ablation and excision. I know a lot more now and would go to an excision specialist next time, but since I only had surgery a year ago, I really do not want to jump straight into another one yet. I’m trying to find other options because my pain is slowly returning to how bad it was before surgery.
CURRENT SYMPTOMS:
- Extremely painful periods with heavy clotting
- Deep rectal pain/pressure with pulling, tugging, aching, and throbbing sensations that radiate through the front of my pelvis too
- “Lightning” pain up my vagina and rectum
- Pain with bowel movements and even passing gas
- Pain with sex, especially deep penetration
- Pain with pushing/straining movements
- Ovary pain during ovulation
- Sometimes it hurts even just to sit down
- Chronic bladder pain/issues despite no UTI or diagnosed bladder condition: burning, urgency, hesitancy, weak stream, trouble fully emptying, pressure, and pain with urination. Stress triggers it badly, and sometimes certain foods too
-Daily bowel movements but constantly feel constipated or like I cannot fully empty
- Severe fatigue, hair loss, mood swings, depression, anxiety, and suicidal thoughts
- Also recently found out I have low progesterone plus deficiencies in B12, vitamin D, zinc, and iron. I started supplements about a month ago and have noticed a little improvement, but not much yet.
The only medication I’ve tried so far was Myfembree, started 2 months after surgery and it was honestly horrible for me. It made me bleed 2–3 times a month, caused weight gain, and eventually gave me severe suicidal thoughts that kept getting darker over time. I stopped it after 5 months. My mental symptoms improved after stopping, but not completely.
Since December, I’ve been taking daily oral bioidentical progesterone. It definitely reduced my period pain somewhat, but not enough to give me my quality of life back. I also did a few months of pelvic floor PT, had some improvement, but not a ton there either.
What scares me most is that my severe rectal pain is now happening outside my cycle. Normally my pain is mostly during my period, but the past few days I’ve had horrible rectal pain and pressure even though I’m still 2 weeks away from my period. That has NEVER happened before.
If anyone with similar symptoms has found anything that helped, please let me know. I’m trying to hold off on another surgery for at least another year if possible. I’m open to anything at this point - continuous birth control, IUDs, antihistamines, LDN, GLP-1s, pelvic floor therapy, literally anything. I’m in the process of searching for a new doctor but wanted to hear firsthand experiences from others here as well. Thank you thank you thank you to anyone who responds.