Endometriosis

I am so sorry to hear that you are still having cyclic pain with urination. This is a very common symptom of endometriosis (even if there is not endometriosis on the tissue overlying the bladder, which it sounds like you actually did have). Endometriosis is graded on a I-IV severity scale, and because you had an endometrioma cyst, that makes you at least a Stage III and potentially a Stage IV, which also means you are likely to have more deeply infiltrating disease outside of the cyst as well. High volume endometriosis surgeons always recommend excision of endometriosis, as opposed to ablation, especially in the setting of more deeply infiltrating disease, for several reasons: 1) sometimes the endometriosis is growing deeper than expected, so if you excise it, you can make sure you are getting the whole implant, vs if you just ablate it, you might just be treating the surface. 2) if there is any surrounding fibrosis (which is a thickening or hardening of the tissue that forms around the endometriosis as a reaction to inflammation) this can be removed as well, which we think provides additional pain relief. And 3) when you excise, you generate a piece of tissue to send off to the lab for them to look at underneath the microscope to confirm the diagnosis. So based on the fact that your surgeon used a combination of excision and ablation, and that fact that you are still having symptoms, I suspect your endometriosis was incompletely treated. With good surgical technique, bleeding should not be a barrier to excising endometriosis. I do think another surgery would help, but I would seek out a more specialized surgeon. I always recommend patients look for a fellowship-trained, high-volume, board-certified Minimally Invasive Gynecologic Surgeon who has never practiced obstetrics, and who’s entire career has been heavily focused on endometriosis surgery. These surgeons usually operate at least two full days per week. It is possible that continuous birth control to stop your periods would relieve your symptoms. However, if you have a recurrent endometrioma cyst (which is likely to happen quickly after surgery when patients have incompletely treated disease), then medical management is unlikely to provide pain relief. You will need updated imaging before another surgery as well, so an ultrasound would be a good place to start. If you get the ultrasound at a high-volume endometriosis center, they will do what’s called a “dynamic ultrasound,” which means they are not only measuring the size and shape of the uterus and ovaries, but also pressing on them with the transvaginal probe to see if they slide freely, or if it seems like they are stuck. If it seems like they are stuck, that can be a sign of adhesions, which signifies more advanced stage disease. In my practice, if the ultrasound shows an endometrioma or signs of adhesions, or if I feel a deeply infiltrating nodule behind the cervix on my bimanual exam, then I get a specialized endometriosis protocol MRI, which is specifically designed to help predict preoperatively if the endometriosis could be invading into the bladder or rectum. This helps me triage which patients need to see a urologist or colorectal surgeon prior to surgery to either be on standby, or if there is very clear evidence of invasion, then a planned joint procedure. Endometriosis protocol MRIs are only available at high-volume endometriosis centers, so I would seek out a skilled surgeon first, and they will be able to guide you to high-quality imaging. It is also important to note that even an endometriosis protocol MRI cannot see smaller, more superficial endometriosis. So it is important to have a surgeon who knows how to correctly interpret the results. When my MRIs come back negative, that doesn’t necessarily mean there is no recurrent endometriosis or that the patient does not need surgery, it just tells me I don’t need to coordinate with a urologist or colorectal surgeon. Again, finding a surgeon who has access to high-quality imaging, knows how to interpret the results, has the surgical skills to recognize atypical appearing endometriosis (not just the classic dark brown or black spots), and the technical skills to be able to excise all of the disease is of utmost importance.