I have been through several surgeries for endometriosis. The pain kept coming back so my doctor told me I should have a complete hysterectomy to get rid of the pain. I had the hysterectomy, but now a lot of the same symptoms, including the pain, are back. My doctor says that since everything has been removed it can't be endo and wants to send me to a bowel doctor and a psychiatrist. I can I still have endometriosis after having my uterus and both ovaries removed?
Yes, but this can be one of the most difficult situations encountered with endometriosis. It can be difficult from the patient's standpoint, because, not uncommonly, she is dealing with a medical profession, family etc. who is really starting to question the legitimacy of her pain. From a physician's standpoint, this can be the most difficult type of surgery encountered by a gynecologist and thus the most likely not to be correctly or completely treated resulting in "treatment failure" with recurrence of symptoms.
There is no question that endometriosis can be present in a woman who has undergone a hysterectomy and removal of both ovaries (even more likely if the ovaries remain). Performing a hysterectomy does not in itself treat endometriosis. It may reduce the chance of future recurrence of endometriosis, reduce non-endometriosis related cramps, bleeding etc. The key point is that endometriosis, for the most part, does not grow on the uterus, it grows behind the uterus, on the bowel, in the rectovaginal septum, in the pararectal spaces, under the ovaries, around the ureters, on the bladder, etc. If a hysterectomy is part of the agreed upon treatment plan between you and your physician that is fine, but ONLY AFTER the endometriosis has been completely removed from all of the areas which will not be taken out with the uterus. If you have undergone a hysterectomy alone for the treatment of endometriosis (the endometriosis was not treated just prior to the hysterectomy) there is a good chance you will have persistent or recurrent symptoms. The most common symptoms include constant pain, pain with bowel movements, pain with intercourse (usually deep penetration, like he is hitting something inside) and occasionally mid back pain (secondary to ureteral involvement). You can also experience the emotional changes we have seen with endometriosis including moodiness, depression, etc.
Now, assume for a minute that everyone understands your situation (your doctor, significant other, employer etc.) and your gynecologist surgeon is standing there ready to go after the endometriosis. What are the pitfalls? In my experience, by the time a patient has gotten to this point she has undergone so many surgical procedures that is impossible to tell what is and what is not endometriosis. The anatomy is distorted, fairly extensive scar tissue and fibrosis (tough leathery tissue) is present, and often endometriosis is buried out of sight in a patient who has had a hysterectomy performed. The endometriosis gets buried when the surgeon clamps, cuts and ties the tissue during the hysterectomy. The endometriosis that is present get wadded up and buried in this process. After this area heals following the surgery it can be impossible to see endometriosis without dissecting the areas in which endometriosis is known to grow. Another common area for residual endometriosis is the vaginal cuff. Unless all of the endometriosis is removed from the rectovaginal septum prior to the hysterectomy, it can be easily sewn into the vaginal cuff.
We have seen and treated more than 200 women with residual endometriosis after undergoing a hysterectomy. If you are experiencing this situation, you are not alone. In my experience there are several key factors in successfully treating this type of case. First, this is probably the most technically challenging surgery a gynecologist will face. It is important to seek out a surgeon who is technically good and has experience in dealing with this situation. Second, since it can be impossible to determine what is and what is not endometriosis, all abnormal tissue must be removed and the areas in the pelvis where endometriosis is know to grow must be dissected out. It is not uncommon for an area to look normal on the surface, but to have deep endometriosis when opened up. In my experience, all areas need to be dissected down to normal tissue (endometriosis until proven normal). Depending on the specific situation a small portion of the vaginal cuff may need to be resected.
In summary, you can have endometriosis and the associated symptoms and pain even if you have had a hysterectomy. Treatment of this condition is technically challenging and requires the ability, expertise, and equipment to dissect and laser all of the pelvic areas deep down to normal tissue. In my opinion, a surgeon can not get all of the endometriosis and scar tissue by just spot treating or selectively excising lesions.