Hello, I have stage 4 endometriosis, and I’m looking for medical advice. I had surgery in 2023 to remove deep-infiltrating endometriosis, including adhesions found across my pelvis. After the surgery, I was treated with 6 months of Diphereline (GnRH agonist), and then I started Microgynon (combined oral contraceptive), which I am still taking. At first, Microgynon helped with pain, but in the past few months my symptoms are returning and worsening: constant pelvic and lower back pain, radiating into my hips and legs; severe bloating (even after drinking water); painful bowel movements, almost every time; heavy fatigue, even after resting; occasional pain in the ovaries and uterus; and emotional exhaustion due to pain and fear of being dismissed by doctors I’m worried that adhesions have returned and possibly worsened. My cervix is now difficult to locate during exams, and one doctor said it is shifted toward the bowel. What would you recommend as the next step? Should I push for an MRI? Could another surgery be necessary? Thank you so much for your time and help — I’m doing my best to manage, but I need proper medical direction.
Endometriosis
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December 23, 2024
I am so sorry you are having recurrent symptoms. Unfortunately, recurrence after Stage IV endometriosis surgery is fairly common. In my practice, I start with a pelvic ultrasound, and if you have endometrioma cysts on your ovaries, or if on exam in the office I feel a nodule in the space between the cervix and the rectum, then I get a special endometriosis protocol MRI. These specialized MRIs are only offered in high-volume endometriosis centers and are specially designed to try and predict preoperatively if endometriosis is invading into the bladder or rectum, in which case collaboration with a urologist or colorectal surgeon may be necessary. It is important to note though, that even special endometriosis protocol MRIs cannot see small amounts of endometriosis, so a negative MRI does not necessarily mean you don’t have recurrence, it just means you are less likely to have severe deeply infiltrating disease. If you are being dismissed by your doctors and having to “push” for an MRI, that tells me you are not being seen by an endometriosis specialist. Many patients with Stage IV endometriosis do need recurrent surgery, and for patients not interested in being pregnant in the future, adding a hysterectomy to the excision of endometriosis seems to provide additional pain relief and decreases the risk of needing another surgery. For patients who do desire future fertility, surgery with a specialist also results in better, longer lasting pain relief, improved fertility outcomes, and decreases risk of needing another surgery down the road.