Dr. Patricia Yarberry Allen is a collaborative physician. She believes in consulting with the best medical minds on issues that require specialization or unique clinical experience. Today, Dr. Pat calls on the expertise of reproductive endocrinologist Dr. Wulf Utian to counsel a 37-year-old woman suffering pain and depression after a complete hysterectomy.
Dear Dr. Pat:
I am 37 years old. After years of pelvic pain and unmanageable menstrual pain—treated with Danazol and other drugs that prevented menstrual periods—plus three so-called minimally invasive surgeries to remove areas of endometriosis, I finally had a complete hysterectomy and removal of both tubes and ovaries last year.
My doctor wanted me to wait at least six months before beginning estrogen for my surgical and premature menopause, even though he told me that there was no endometriosis left. My surgical menopause was really hell. I had no more pain, but I had depression, hot flashes, and sweats day and night—no sleep and no energy. I lost my ability to think clearly.
Finally I demanded hormone therapy. He said I needed a bigger dose to start with because I was still young and would feel like myself with a larger dose. He prescribed Premarin 1.25 mg by mouth every day. He said I didn’t need the progesterone hormone, since I don’t have a uterus anymore.
Well I didn’t feel like myself; I felt bloated, I retained water in my feet and legs, my breasts increased in size from a nice C to a double D, and I had constant breast pain. I felt like I was living in someone else’s body. I am still depressed. I have no interest in sex with my partner of many years. I am barely able to do my work, and am afraid that I might lose my job. I have just stopped this Premarin dose.
I know women have worse stories than mine, but I feel gypped. Because of this, I could never get pregnant. My marriage ended after five years of trying to conceive. Now I can never have children, and I am really sad about this. I am in a really good relationship now, but I haven’t have sex for months because I didn’t want to and was afraid that it would hurt because of the hysterectomy. Recently I tried to have intercourse, and it was too painful with entry of the penis.
I have lost my chance to be a mother. I am going to lose my current relationship with a really nice guy who has tried to be understanding—but with no sex and living with a woman who is depressed and has no libido, what should I expect? And I may lose my job.
I need to get my hormonal balance back. I need to get my libido back. I need to get my mood fixed. What can I do?
Dr. Pat Replies:
Endometriosis is a condition in which the endometrial tissue that normally just lines the uterine cavity is found at sites outside the uterus. Endometriosis is usually located in the pelvic cavity: on the ovaries, Fallopian tubes, bladder, appendix, and other parts of the colon, but endometriosis can occur in almost any part of the body. Endometriosis is described as a benign disorder, but in cases like yours it has certainly not been benign. Some women have endometriosis and have no—or minimal—symptoms, and the diagnosis is made only when surgery is performed for some other reason. But many women have stories just like yours.
The issue is that endometriosis is estrogen-dependent, and it is hard to know when or if estrogen should be provided to women who have had removal of all the endometriosis growths and a total hysterectomy with removal of both ovaries. After all, the ovaries were removed to prevent the production of estrogen, which can promote the development of more endometriosis and symptoms.
These are my recommendations for you to discuss with your primary care doctor and your gynecologist.
1. You need to address the many losses that you have suffered from endometriosis. You have endured years of pain and drugs with terrible side effects; multiple operations; failed attempts to become pregnant; loss of a marriage; and now loss of all hope of having children, a goal that was clearly important to you—plus stress that is having an impact on your personal life, your current relationship, and your work.
I would suggest that you see a therapist, and if that person cannot prescribe medications, see a specialist in psychopharmacology as well. No one wants to be told she could benefit from therapy, but you have real symptoms of depression and post-traumatic stress. Both talking therapy and medication that can improve the mood and help with menopausal symptoms could be considered for a short-term trial.
2. You can certainly, with minimal risk, have treatment with local estrogen for genital-tissue atrophy and dryness with local estrogen. Then when the tissue has become normal again (pink, plump, moist, and elastic), you could see a pelvic floor physical therapist a few times to help you to learn how to have comfortable intercourse again. And when you start to feel better emotionally, you may want to engage in non-intercourse sexual intimacy while waiting for time and treatment to make it possible for you to have comfortable intercourse again.
3. You were right to stop the Premarin oral estrogen at that high dose. If you address the estrogen-deprived genital tissue separately, then you may consider a low-dose estradiol patch, which can help you to return to feeling like yourself, but hopefully a self that won’t have pain again.
I have asked Dr. Wulf H. Utian, a reproductive endocrinologist and gynecologist who was the founder of the North American Menopause Society and is Professor Emeritus, Case Western Reserve University, and Consultant, Gynecology and Women’s Health, the Cleveland Clinic, to comment on the difficult question of estrogen use after removal of all visible endometriosis, along with the creation of a surgical menopause in a young woman.
Thanks for sending in this question, DB. I am sure that it will be helpful to others.
Dr. Utian Replies:
Dr. Allen reached me on my cell phone and asked me to comment on this question as I was in the airport in Chicago heading to the American College of Obstetrics and Gynecology annual meeting in New Orleans. She asked that I just address, in a quick and simple way, the risks and benefits of estrogen treatment and no treatment in someone with your history.
In general, if there is no evidence of residual endometriosis, the likelihood of problems arising from estrogen therapy is far exceeded by the long-term negative effects of hormone deprivation following oophorectomy [the surgical removal of one or both ovaries] in young women. The latter include the negative impact on quality of life from vasomotor [dilation/contraction of blood vessels, which causes hot flashes] and vulvovaginal symptoms, and the increased risk of osteoporosis and bone fractures, heart attacks, general skin atrophy, and possible brain-related effects. I generally recommend a transdermal estrogen starting at a standard dose, because such women are younger. If there was any residual endometriosis, a combined regimen of estrogen and progestogen could be considered, but this would be infrequent. Recurrence of pelvic pain would be a possible indicator of recurrence, in which case it would be wise to discontinue therapy. The future use of an estrogen combined with a SERM [a drug that blocks the naturally circulating estrogen in breast tissues and other estrogen-sensitive tissues] would be an ideal combination, but such products have not yet been approved by the FDA.
Do discuss these suggestions with your medical team.
Dr. Wulf H. Utian