On March 30th, Dr. Paul MacKoul, MD and Dr. Natalya Danilyants, MD hosted a webinar Get a Handle on Endometriosis: Why is It So Misunderstood by Patients and Doctors? and Q&A for anyone interested in learning more about endometriosis, the symptoms, treatment techniques, and minimally invasive GYN surgery at The Center for Innovative GYN Care.
Below are some of the highlights from the Q&A.
Endometriosis After Menopause/Hysterectomy
Caller: What are the treatment options for a woman post hysterectomy/post-menopausal. I’m having new endo related symptoms, in my opinion, but I’m told surgery isn’t an option, because the odds of me having endo with my history is less than 1%. Guess I’m frustrated because doctor after doctor has learned more from me and my body, and about endo than the other way around. Is endo really less than 1% women post hysterectomy and post menopausal?
Dr. MacKoul: A lot of people who are menopausal have chronic scar tissue (pelvic adhesions) from endometriosis. The other issue that comes up is that some menopausal patients who have had a hysterectomy can use estrogen very safely. This is per the Women’s Health Initiative study, that indicated that estrogen therapy alone, with the uterus removed is not associated with breast cancer risk or other types of risks, but that certainly can exacerbate or stimulate the growth of endometriosis in the pelvis. That of course can lead to additional pain. So it’s not that unusual nowadays for menopausal patients on estrogen to get pain from endometriosis. Or those patients who have had endometriosis in the past, usually severe, that have chronic longstanding pain from scar tissue.
In those situations, typically laparoscopy is required, it will evaluate the pelvis completely, look for active disease, look for chronic scarring that can cause disease, and there may even be a case of a small piece of an ovary remaining, called ovarian remnant syndrome that can cause pain.
So there certainly is a role for laparoscopy, and I think it’s important to understand that there is no other way to detect small volume endometriotic disease. It requires laparoscopy to actually visualize and remove. (Endometriosis excision)
Endometriosis Staging Doesn’t Classify Pain or Fertility Outlook
Caller: What are the stages of endometriosis?
Dr. MacKoul: There are various stages for endometriosis and really we don’t use staging as a way to determine the extent of disease or the type of pain. It’s sort of an archaic way to classify endometriosis. As an example, stage 1 disease is small residual deposits of endometriosis or what’s called implants in the pelvis, very small involving the lower portion of the pelvis. And it can go from Stage 1 to Stage 4. Stage 4 is essentially what is called a frozen pelvis, the entire pelvis is stuck together, which would involve the ovaries, often the uterus, the rectum, the bladder, and that would be considered the highest stage.
It doesn’t really matter though. There are people with stage 1 disease who have severe pain, with a couple of small implants, and there are some patients with stage 4 disease who have minimal symptoms, so pain is not relative to stage, and infertility is not relative to stage either. There are people who have stage 4 disease who can’t get pregnant, and there are people who have stage 1 disease who can’t get pregnant. So I wouldn’t get hooked up on staging too much. You can find staging diagrams all over the internet, but I think the important point to note is that the disease has to be diagnosed, the extent of the disease has to be removed laparoscopically, and then either treated with medical suppression, or patients try to become pregnant after that point.
What Options Are There For Women Who Can’t Tolerate Birth Control
Caller: I was diagnosed about 15 years ago with endometriosis, I had extensive laparoscopy done about a year and a half ago. I have exhausted all of my options in regards to hormonal therapies. I get really bad side effects, including suicide ideation, and so at the moment I am off of birth control pills and any other hormone therapies. What predicament am I putting myself in not being on hormonal therapies, as far as more damage being done with the endometriosis? I have not tried Lupron, and that is because of the potential side effects. And I know with having my history with previously having other hormonal therapies, I get extremely depressed, etc. So what would be my treatment options?
Dr. MacKoul: The one question I have to ask you is if you want pregnancy or not. If pregnancy becomes an issue and you do want to become pregnant, and that is the main goal in your life at this point in time, then several things come into play. Who did the original surgery and the subsequent surgeries. If it was an OB/GYN that did not resect all the disease, you may certainly have had an inadequate surgical resection. Since you can’t use hormone therapy very well, you can’t tolerate it very well, then a specialist probably needs to get in there an assess what’s going on in the pelvis. You may require more extensive dissection of the disease, we use something called retroperitoneal dissection to take out accumulated and advanced endometriosis. That helps to debulk, or remove, large amounts of disease, which will help with pain.
The next step if you want to get pregnant, is to consider some other form or some method to become pregnant, if spontaneous pregnancy will not work. Typically it might be IVF, and what I’m getting at is getting pregnant becomes one of your best options to control disease. Remember when you’re pregnant, you produce a lot of progesterone from the placenta. The progesterone is the anti-estrogen. It actually treats endometriosis medically, so the goal, extensive surgery to help with pain symptoms, seek an IVF specialist, become pregnant, and then after you finish childbearing, you may need to consider a hysterectomy, removal of the uterus which is the source of disease, removal of any additional disease you have remaining, and in your situation, you may need to consider taking out the ovaries if it’s really pretty advanced, and go on low-dose hormone therapy, which is usually well tolerated.
If getting pregnant is not a priority, then you go back to radical dissection of the disease, and then there are various ways to try to treat the disease over the long term. But they will never be as successful as medical suppression. You may end up having additional surgical therapies if you can’t tolerate some kind of medical therapy after the resection of disease.
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