I have always had painful periods, but they're not intolerable. I was diagnosed with extensive endometriosis in February 1998. Since that time a lime-sized endometrial cyst formed on my ovary, plus extensive involvement of the colon and intestine. The doctor is concerned about the rate of spread of the endo and says hysterectomy is my only "real" option. I don't have intolerable pain. Would I be crazy to do nothing at all? I don't want to have a hysterectomy. I'm over 40 and don't want any children, but I have a low tolerance to birth control pills and fear hormone replacement therapy.

Cindy

Endometriosis should be considered a progressive, chronic disease. As with diabetes or high blood pressure, there is no cure for this condition. Luckily, there are ways to treat it and address the symptoms. Treatment may consist of drug therapy, conservative surgery (removing endometriosis but leaving your anatomy intact), or extirpative surgery (removing the uterus and/or tubes and ovaries).

It is important to understand, though, that there is no "one-size-fits-all" solution. What works well for one woman will not necessarily be best for another; medical therapy may offer continuous symptom-free intervals for some women while offering no relief for others. So, for the best results, treatment plans must be individualized. This can only be accomplished if you have a good relationship with your physician, where you can ask questions and become an active participant in the decision-making process.

In order to make a recommendation in a specific case, I would have to perform a thorough medical history and examination, including ultrasound and possibly a sigmoidoscopy or colonoscopy to check for bowel involvement. The woman's age and desire for future fertility as well as any symptoms weigh heavily in determining which options may be best for her.

Let's address some of the particulars in your situation. One option to consider is medical therapy. While use of a GnRH-agonist such as Lupron or Zoladex can be used to limit progression and control symptoms, many women are concerned about the long-term safety of these drugs. Still, we have learned much about how to safely use these medications over the past few years. By initiating add-back therapy (a daily low constant dose of estrogen and progesterone) at the same time as GnRH-a shots are begun, you can effectively avoid the low-estrogen side effects associated with treatment. While in the past we stopped therapy after six months, add-back therapy now effectively lets us continue treatment indefinitely while avoiding hot flashes, bone loss and risk of heart disease.

But medical therapy may not be optimal in your situation, as endometriosis of the bowel and or ovaries is not well controlled with medical therapy. Rupture of an ovarian endometrioma can necessitate emergency surgery and pose additional risks to your health. Progression of endometriosis involving the bowel or bladder may increase the risk of bowel or bladder resection in the future.

Based on the information you provided, surgical treatment would appear to be your best option. So then the decision is whether to remove disease, or perform hysterectomy. Statistics would suggest that about 50-70 percent of women with severe disease will require additional surgery in the future if they have a uterine-sparing operation (that is, removing only the endometriosis). In fact, even after hysterectomy, studies have suggested that future surgery may be necessary for 30-60 percent of women if one or both ovaries remain after hysterectomy.

Alternatively, if a skilled surgeon removes the uterus and both ovaries as well as removing any portions of the bowel that are involved, cure rates appear to be over 85 percent. Yes, this does mean you would need hormone replacement therapy. Yes, taking a medication is a nuisance. NO, hormone replacement does not cause cancer. But, I caution women who undergo hysterectomy and removal of the ovaries to ask their physicians about using estrogen combined with a daily dose of progesterone. While many physicians will prescribe estrogen alone after removal of the uterus, I feel that when the reason for hysterectomy was endometriosis, the use of the combination hormone replacement limits the risk of recurrence.