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October 2002

Does recurrent endometriosis after hysterectomy indicate residual or recurrent disease and what role does HRT choices or ovarian preservation play in the genesis of recurrent pain?

EndoZone.org Editorial Advisor Andrew Prentice, MD comments: 
There is no doubt that a proportion of women who undergo radical surgery for endometriosis (hysterectomy with or without removal of the ovaries) are unfortunate to suffer further symptoms which in many cases can be linked to the finding of endometriosis in the pelvis. As a definitive treatment for symptomatic endometriosis it was described in the 1930s. Hysterectomy in the eyes of many should be the last resort of treatment for endometriosis unless there is another valid indication for the operation. It is therefore reserved by many gynaecologists for the most severe cases. Such cases can be technically challenging for the surgeon and it would not surprise me if active disease was left behind at the time of the original surgery. I think it is unlikely that this is recurrent disease, as the sources of endometrial tissue, both within the uterus and from ectopic sites, should have been removed.

There is no doubt that women with recurrent disease are more likely to have been exposed to hormones. These hormones may be their own, from conserved ovaries, or from Hormone Replacement Therapy (HRT)*. There is data to suggest that approximately half the women who have their uterus removed but have their ovaries conserved will require further surgery for relief of symptoms. Many surgeons therefore advocate the removal of ovaries at time of hysterectomy. This then raises the question of hormone replacement therapy. The levels of oestradiol associated with HRT are much lower than those produced naturally and the incidence of recurrence of symptoms associated with HRT is not particularly high. The lowest dose of HRT to relieve symptoms should be chosen or alternatively a preparation such as tibilone, which does not stimulate endometrial growth may be used.

* in this instance "HRT" can be both oestrogen and progestagen.

EndoZone.org Editorial Advisor, David B Redwine, MD comments: Removal of the uterus, tubes and ovaries will relieve pain coming from those organs, including dysmenorrhoea, painful intercourse, bleeding problems, ovulation pain and some pain due to adhesions. Most gynaecologists are trained to leave endometriosis in place if they are removing the pelvic organs because removal of these organs is considered "definitive" surgery for the disease, in part because it is believed that without ovarian production of oestrogen, the endometriosis will go away somehow. "Definitive" in this case means the maximum surgery that can be done. Since the uterus, tubes and ovaries are not the most common areas of involvement by endometriosis, this means that most patients having "definitive" surgery will have residual disease left in place. So the answer to the first part of the question is always: residual. In most women, endometriosis can be successfully excised completely without removal of the pelvic organs.

Endometriosis symptoms are usually oestrogen-dependent; meaning oestrogen from some source is needed to maintain those symptoms. In women having "definitive" surgery including removal of the ovaries, the only possible sources of oestrogen are either Estrogen Replacement Therapy (ERT) obtained from a doctor, or conversion of adrenal precursors into oestrogen due to the action of an enzyme, which is produced by the endometriosis itself. The enzyme is called aromatase and seems to be more commonly found in deep invasive endometriosis.

The main reason for any woman to consider ERT is if she has symptoms due to no oestrogen, such as hot flashes, night sweats, vaginal dryness, irritability, difficulty sleeping, fatigue, lack of energy, and so on. Not all women have symptoms of oestrogen deficiency, but most will following "definitive" surgery done before the age of 45. Typically, oestrogen replacement therapy in a sufficient dose by whatever route to achieve a serum estradiol level of between 100 and 300 picograms/ml should be OK. Not all women with residual disease will become symptomatic with ERT, especially those with superficial disease. We know that withholding ERT for some period of time after "definitive" surgery simply delays when a patient will become symptomatic, so this means that all women can be started on ERT immediately after surgery if desired. If they are lucky, their symptoms will not be aggravated by ERT. There is no study showing a benefit to adding progesterone in women following "definitive" surgery, so this medicine should not be used as its use still falls into the experimental category. If a patient has continuing symptoms, the best treatment currently is referral to a qualified tertiary surgical treatment centre for complete removal of her disease.

Medical therapy does not treat endometriosis, it treats only the symptoms. This means that endometriosis can be treated only by surgery. The best treatment for endometriosis is excision, since this is the only treatment that can treat both superficial and deep disease anywhere in the body. Shining a light at the disease or spraying electrons at it does not have the benefit of either common sense (since both may burn too superficially) or proof of efficacy as determined by systematic follow-up of a sufficient number of re-operated patients. If a patient's pain is due to endometriosis, then excision of all disease will relieve her pain. Think how much unnecessary repeat surgeries (including "definitive" surgery) could be avoided if all women had all disease excised the first time.

Feedback/Comments

Question 
Two years after a partial hysterectomy I had recurring endo symptoms. I had a scan and a 9cm cyst was found on my left ovary. 2 months later and another scan showed the ovary to be clear. I was in a lot of pain the week before the scan and wonder if the cyst ruptured and if so would it cause further adhesions through my body? Could it have reabsorbed into my body in that time? I am still getting endo symptoms though not as severe as before. I am a bit confused and ideally would like to find some information regarding this. This site is really helpful and I have especially enjoyed the interviews with Doctors about numerous subjects. 

Anita Turner 

Answer 
Removal of the uterus does not make endometriosis go away, but will cure uterine symptoms such as cramps and heavy bleeding. During a hysterectomy, most surgeons will leave endometriosis in place, believing that by removing something else it will go away. (I know, it sound ridiculous, but this is what doctors are taught). It is possible that before your hysterectomy you had problems both due to endometriosis as well as from the uterus. If so, you may be now left with the endometriosis part of your problem. Endometriosis require surgical removal for the best treatment. 

The ovaries will continue to function even though the uterus is gone, so they will still ovulate as well as produce eggs and estrogen, at least until Mother Nature makes them go to sleep in the mid-late forties in most women. Each month before ovulation, a cyst forms, and after ovulation, that cyst turns into another type of cyst which will eventually go away (usually but not always). Even though these cysts are "normal", they can cause pain if they are large enough or if they have a little bleeding associated with them. Endometriosis cysts usually will not go away unless surgery is done, so my guess would be that your cyst was not an endometrioma cyst, but a functional cyst of the ovary. 

David Redwine, MD

Feedback:

Question 
I had a complete hysterectomy 2 yrs ago and immediately began HRT which did not agree with me at all so I haven't taken any for over a year The hotflashes have stopped but I still have bearable night sweats. I have terrible joint pain in my wrists and neck and my neck feels like it is burning. Could the joint pain be a associated with the endometriosis?

Dawn Renee Clark 

Answer 
There are several reasons why women do not do well with HRT: Many women are prescribed premarin which is not a human oestrogen. Other women, particularly those with endo, have hormone allergies and these women have a very hard time taking oestradiol unless they undergo desensitization and then the side effects of the oestrogen go away. As for the joint pain, it is very common in women who are hypoestrogenic. The pain can be quite severe. Oestrogen alleviates the pain, but in women with allergies, causes other side effects. The old Catch-22. The answer is to undergo desentization or use a synthetic oestrogen such as ethinyl oestradiol or use plant oestrogens. Other reasons for joint pain include fibromyalgia, which is often seen in women with endometriosis. The approach to this problem is to go on a low glycemic diet, address bowel flora imbalances, test & treat insulin resistance, identify and treat food allergies, and identify and treat hormone/Candida allergies. This approach usually provides miraculous relief. 

Deborah Metzger, MD, PhD