Hi, I have what will most likely be a complex case. I am 49, and the pain began as cyclical only in my early teens. I lived a very normal life until perimenopause at 43. Then suddenly my body was at war with itself. Unfortunately pelvic PT kept me coming for about 6 years without any real change in my pain, and no one ever referred me for getting excision. Everyone just said the nerves are irritated. I know I have endometriosis on the posterior cul-de-sac as well as the uterosacral ligament because, in the first year my pain began, I chose to have a hysterectomy d/t an extremely enlarged retroflexed uterus. Endo was found during that lap, as well as scar tissue and adhesions, and the surgeon chose to just ablate it. I also had all of my pelvic veins coiled during another surgery for pelvic congestion syndrome. The pudendal veins were extremely enlarged. None of these surgeries changed my pain at all. I had a positive nerve block at L5S1 and have already ruled out this being a spinal issue with a spinal neurosurgeon. So the root of this has to be endo fueled by hormonal spikes. I began taking combined HRT, and over the course of a year it has helped stabilize so that I am not continuously in a massive flare of nerve pain, but I still am in a lot of pain. I also know my bowel is severely displaced on MRI. Given my presentation of symptoms, I just want to know realistically what an expected long-term outcome would look like for me post-excision surgery? The pain has been daily since 2020. I have a consult in a few months with a specialist who actually specializes in endometriosis, pelvic pain, and nerve entrapment. Finding this surgeon in-network with insurance was like finding a needle in a haystack, so I feel incredibly lucky. Any thoughts on my situation are much appreciated.
Endometriosis
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December 23, 2024
Hi there,
First, I am sorry to hear how much you have been struggling over the past several years. Your history is certainly complex, but I believe there are several important points worth considering.
The fact that endometriosis was identified in your posterior cul-de-sac and uterosacral ligaments is particularly relevant. These areas are closely related to important pelvic nerve structures, and deep infiltrating endometriosis may contribute to neuropathic symptoms. Since your previous surgery involved ablation rather than complete excision, residual disease remains a possibility, especially if deeper lesions were present.
However, after six years of continuous pain, we also need to consider a phenomenon called central sensitization. When pain persists for years, the nervous system may become increasingly sensitive, sometimes continuing to generate pain even after the original source has been treated. This does not mean that your pain is psychological or that surgery cannot help. It simply means that more than one mechanism may now be contributing to your symptoms.
Regarding your question about long-term outcomes after excision surgery, I would emphasize three things:
Your MRI findings also deserve careful evaluation. Bowel displacement may reflect adhesions or deep infiltrating disease, but the imaging needs to be reviewed in detail to determine its actual significance.
I would strongly recommend that your specialist review your previous operative reports, surgical findings, and MRI images before deciding whether another surgery is appropriate. Ideally, the evaluation should distinguish between residual endometriosis, possible nerve involvement, and other mechanisms of chronic pelvic pain.
The encouraging part is that six years of pain does not mean you have missed your opportunity to improve. I have seen patients with long-standing, complex endometriosis experience meaningful improvements in pain and quality of life after appropriate treatment. However, setting realistic expectations and developing an individualized treatment plan are essential.
I am glad you have found a specialist experienced in endometriosis and pelvic nerve disorders. That is an important step toward understanding what is actually driving your symptoms.
Warm regards,
Patrick Bellelis, MD, PhD
Endometriosis and Minimally Invasive Gynecologic Surgery Specialist
Thank you so much for taking the time to give such a detailed response. I think I really needed to hear words of encouragement right now from an expert that even though my pain has been long standing, you still see real improvements with the appropriate treatment. This has been a real battle as I know it is for every woman with endometriosis. I have experienced such a lack of knowledge from providers not only of endometriosis but of things like central sensitization. A pain management PA told me she had never heard of it before, and she was very dismissive of the idea. Thank you for validating that and for caring about women so much!