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Endometriosis is there a cure?

April 30, 2015

Dr. Michael Fox responds to the following article:

“This article highlights the realities of endometriosis and what patients face in the current medical world. Based on years of experience we don’t believe the “party line” on endometriosis. As described in the article, the disease begins in the teen years. I know Mary Lou Ballweg very well and know that she understands the devastation of this disease. The patients described in the article though represent the minority of women with the disease. Pain is severe in the teen years but birth control pills are very effective at relieving pain and sadly the disease rages on, causing severe fertility problems and later hormonal dysfunction, decreased estrogen and all its devastating effects, followed by early menopause (usually age 44-45). This constellation can be devastating for women.

Also, as the article points out, the medical world believes endometriosis is not curable. This is not true. We have data published as a poster at the American Society for Reproductive Medicine and an ongoing study with clear evidence supporting a cure with resection of endometriosis. For many reasons too numerous to discuss here, only a handful of physicians worldwide perform complete excision of endometriosis. Traditionally, the lesions are simply cauterized or lasered which clearly does not cure the disease. Therefore, all studies that have looked at surgical treatment show short lived relief and minimal results. This is the only disease that I know of where treatments, both surgical and medical, are promoted that don’t cure the disease. If you have a bowel or skin tumor, for example, you don’t take medicines or do an incomplete surgery, you remove them. The same should be true for endo. Sadly, this was standard of care from 1900-1975 or so when open surgery was used to evaluate and treat endo. Only with the advent of the “newer, minimally invasive surgery” called laparoscopy did the inferior treatment method emerge. One of the few examples of technological advances actually setting back medical care.

With that said, excision does treat the disease of endometriosis. Our belief is that anyone with endo should be treated at the first suspicion of the disease. The inflammation that is caused by endo likely slowly damages the ovaries removing eggs at a faster than normal rate – hence infertility and earlier menopause. So instead of birth control pills for the adolescent, surgery with complete excision by a very experienced operator is the best course of action. The trick is that the visual appearance of endo is very subtle in youngsters and wider areas should be resected from the typical distribution pattern. It is possible to miss some microscopic disease utilizing this method, often a lesion or two on the tube or uterine surface. Even then though, the disease is dramatically reduced to a negligible amount that likely would cause no symptoms. Proof that this early intervention will prevent fertility problems or lengthen normal hormone production will be difficult and would take a 40 year longitudinal study that would be very difficult to accomplish. Based on our observations this positive outcome would be very likely. There is support however both in the literature (studies) and in our experience that endometriosis excision improves the pregnancy rate immediately. This is most likely due to the removal of the intense inflammatory response in the pelvis that is consistently present throughout a woman’s life unless treated.

Lastly, to address pain. Another great confusion in the discussion of endometriosis is the idea that pain = endometriosis. The assumption has clouded the issue and especially the research into the disease for years. We see and know of multiple causes of pain that are potentially related but not endometriosis. So if you have blinders on and always assume that the endo patient has pain from endometriosis, your treatments are not going to be overly successful and in fact this is what most doctors think: “you can’t really help people with endometriosis.” This is sad but fortunately not true. Below are listed some other conditions that cause pelvic pain and if not addressed properly will result in persistent pain as described in the article:
1. Adenomyosis (uterine muscle endometriosis)
2. Pelvic floor spasms
3. Inguinal pain (occult inguinal hernias)
4. Interstitial cystitis
5. Abdominal wall syndrome
6. musculoskeletal abnormalities

Many patients have multiple components to their pain. It is important to understand how endometriosis progresses in a woman over time with no treatment. This is what Most would experience. Severe pain with periods as a teenager followed by a decrease in pain in the early to mid 20’s. Pain with periods will increase in the early to mid 30’s but now caused primarily by adenomyosis or uterine endo. Some younger patients with severe disease will have pain with intercourse and certainly adenomyosis (tender uterus) causes pain with intercourse. This is obviously an overview and other related symptoms do occur in individual patients. The “later hysterectomy” comes as a result of adenomyosis which we believe exists to some degree in all endo patients and can be worsened by delivery of pregnancies.

How does one know she has endometriosis?
Two years ago we performed a study that showed a 99% incidence of endometriosis at laparoscopy if the patient reported “bad pain with periods as a teen.” This was defined as missing school, “should have missed school,” or worse than peers. So if you have had this problem or the mother of a teen with this problem, you can be assured that endo is present. Again, be careful in the “reassurance” given by the significant pain relief that birth control pills offers these young women. The difficulty lies in the fact that not all patients with endo have severe teenage pain.

Other strong indicators in older patients that may not have had teenage period pain include:
1. Infertility (may exist in >75% of women seeking care)
2. Shortened cycle intervals (less than 27 days)
3. Moderate to severe PMS (mood changes, bloating, headaches)
4. Mother’s age at menopause < 46
5. Family history of endo
6. Early onset of gray hair < 35 years (this is often familial also)

It is sad that such a pervasive disease in our population has been totally derailed by technology and now is so poorly understood. We certainly don’t have all the answers but after careful study and attention to these details, we have been extremely successful in treating both infertility and pain in these patients. procedures such as inguinal hernia repair for lateral pain and pre-sacral neurectomy (cutting the uterine sensory nerve) have greatly improved the quality of life in patients with this disease. It is important if hysterectomy is planned, to make sure to excise all of the endometriosis including bowel disease, and to address inguinal pain at the same time. We see a fair number of patients, as the one described in the article, who have hysterectomies but continue with their pain. Again, pain does Not always equal endometriosis.

As a final note, due to the decline in ovarian function in endo patients, estrogen levels are low and most highly benefit from low level estrogen supplementation in their mid 30’s and certainly by late 30’s. With early hysterectomy, estrogen replacement is critical to prevent the potential for system wide aging in these women. Best of luck to all and we are happy to discuss these issues in the office any time.
Michael D. Fox, MD
Jacksonville Center
Reproductive Medicine…/endometriosis-is-often-ig…/…

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