Hysterectomy(surgical removal of the uterus) is the second most frequently performed surgical procedure among reproductive aged women in the United States, with approximately 600,000 hysterectomies performed each year at an estimated annual cost of $5 billion.  The most common diagnoses associated with hysterectomy are fibroids, uterine prolapse, cervical dysplasia and...Endometriosis.  In fact, among women aged 30–34 years, the leading cause of hysterectomy is Endometriosis⁽¹⁾.

The old school belief was once that a hysterectomy was the cure for Endometriosis.  Today, of course, we know this is untrue and that a hysterectomy is no more curative than pregnancy (another common fallacy).  However, women with Endometriosis who have elected to undergo a hysterectomy have found relief following the procedure.  So is a hysterectomy the right answer for you? Maybe, maybe not.

Get the Facts:

Ask your surgeon; what's involved? What can you expect following a hysterectomy?  Will it alleviate all your pain? Will you need HRT? Are there alternatives?

Know your Needs:

What are your treatment goals? Are you hoping strictly for pain relief, or is fertility your primary concern?  What treatments haven't you tried yet?

While a hysterectomy can provide significant symptomatic relief in many cases, it is not a definitive cure for the disease.  For example: in an 18-month long study conducted by Johns Hopkins, 138 women with Endometriosis underwent hysterectomies. In the group of those who kept their ovaries, 31% had recurrence of disease. Of those who had their ovaries removed, 10% had recurrence⁽²⁾.

A hysterectomy can be performed either vaginally or abdominally.  The U.S. Centers for Disease Control compared the risks of vaginal versus abdominal hysterectomy, and found that the risk of one or more post-surgical complications (such as uncontrolled bleeding and fever) was 1.7 times higher for abdominal hysterectomy than for vaginal hysterectomy⁽³⁾.

In a vaginal hysterectomy, the uterus is removed through the vagina. This requires no abdominal incision, so recovery and hospital stays are often shorter. This method, however, can interfere with sexual function because the vagina may be tightened or shortened during the surgery.  LAVH (laparoscopic assisted vaginal hysterectomy) is similar to the vaginal hysterectomy, but the surgeon is assisted with the aid of the laparoscope. The uterus is cut and removed in sections through the scope or vaginally. Though the surgery takes longer, hospital stay and recovery time are often shortened.

In an abdominal hysterectomy, an incision is made in the abdomen either vertically below the belly button or horizontally above the pubic hairline. The incision is generally about 6 to 8 inches long. Organs are then removed through the incision.

"Types" of hysterectomy:

• subtotal (or supracervical) - the uterus is removed, but the cervix remains intact.
• total (or complete) - uterus, cervix, and fundus are removed, but the ovaries and fallopian tubes remain intact.  As with subtotal hysterectomy, pre-menopausal women who undergo this procedure will still ovulate, but will not experience any menstrual flow.
• hysterectomy with bilateral salpingo-oophorectomy: uterus, cervix, fallopian tubes, and ovaries are removed.  If one ovary is left because it is not diseased, this procedure is called a unilateral salpingo-oophorectomy.
• radical hysterectomy: uterus, cervix, fallopian tubes, ovaries, part of the vagina, and sometimes pelvic lymph nodes are removed.  Generally, this procedure is reserved to treat widespread cancer.

Recovery time following hysterectomy varies from patient to patient.  Reported times have been from 3-10 weeks.⁽⁴⁾  Many women may be depressed or concerned about sexual relations following their hysterectomy. Do not hesitate to address these concerns with your physician, and seek the assistance of a licensed therapist if the need arises. Support groups can also be extremely helpful in aiding a patient through this difficult time.  For more information on this and other post-hysterectomy support needs, visit Hystersisters online at www.hystersisters.com.

Physically, the patient can expect not to have sex for up to 6 weeks after surgery. Mentally, a study has shown that 25-45% of women over the age of 45 who have undergone hysterectomy (with or without ovary removal) have experienced a loss in libido.⁽⁵⁾

To HRT or not to HRT; that is the question:

Hormone Replacement Therapy (HRT) is usually necessary for most women who have undergone a hysterectomy.  However, HRT is a particularly thorny issue for Endometriosis patients. Some professionals believe that any amount of estrogen replacement will spur a recurrence of disease; others feel that it is important to have estrogen in small enough doses where it will not stimulate any remaining Endometriosis, but will offer protective factors to the woman's bones, heart, etc.  Still others believe that HRT should be offered to the patient, but only after 6 months to a year.  Work with your physician to find out what is right for your needs.

This issue will be specifically addressed in greater detail in this column at a future time.

The non-synthetic approach:

Some members of the Endometriosis community have reported that their menopausal symptoms decreased while taking the following supplements or herbs:

Vitamin C, Vitamin A, Vitamin E, Calcium, Vitamin D, Ginseng, Black Cohosh (estrogenic), Chamomile, Natural Soy (contains progesterone) and Belladonna derivatives.

As with any course of therapy, you should consult an appropriate, licensed healthcare professional for advisement before undertaking any regimen(s).

When is hysterectomy not the right answer?

A hysterectomy may not be your best choice of treatment for several reasons, not the least of which is preservation of fertility.  If your main goal in treating your disease is to restore or preserve your fertility, see a reproductive endocrinologist specializing in Endometriosis and discuss the situation with him/her prior to deciding on hysterectomy.  One of the best sites I've ever seen regarding Endometriosis and infertility is Dr. Mark Perloe's online information resource, IVF.com.

If your disease is not confined to the uterus, cul-de-sac or ovaries, a hysterectomy will not likely relieve all of your pain.  Endometriosis located on or around the bowel, for instance, may not be rendered inactive simply with the removal of your uterus.  Extrapelvic disease, such as thoracic or sciatic Endometriosis, will not likely be affected by hysterectomy either.

Meticulous, thorough excision of all disease from all locations has been shown to have the most effective success in disease management.

You should never consider hysterectomy if you have not tried any other treatments for your Endometriosis (i.e. surgical removal, medical therapy, alternative therapies).  If you were diagnosed (but no disease was removed) at the time of your laparoscopy and your doctor's only suggestion to you for treatment is a hysterectomy, please consider a second - and third - opinion.

For more information on Endometriosis and treatments in general, please see  "Endometriosis 101: The Basics" and "Endometriosis 2000 & Beyond: the Future of Research & Treatment."  I also highly recommend contacting the Endometriosis Research Center for support and information on the disease.

Are there any alternatives?

The good news is, yes.

• endometrial ablation - usually an outpatient procedure where electricity is used to burn away the lining of the uterus. This is done via hysteroscope, an instrument placed through the natural opening in the cervix (no incisions are needed).
• thermal balloon -  placement of a plastic balloon into the uterus through the cervix. The balloon is then filled with sterile water and heated to very high temperatures, destroying the lining of the uterus.
• uterine artery embolization - a procedure that uses angiographic techniques to place a catheter into the uterine arteries. Small particles are injected into the arteries, resulting in the blockage of the arteries.  Generally used, with success, for the treatment of fibroids.
• medical therapy - you may wish to try a course of GnRH or other medical therapy to achieve possible symptomatic relief.  Lupron, Abarelix, Synarel and Zoladex are examples of medical therapy.
• alternative therapies - see "Alternative Approaches to Endometriosis Relief" for more information.
• excision surgery - eradication of all disease through surgical excision.  For in-depth discussions of this technique, please visit Dr. David Redwine's website and the Center for Endometriosis Care's website.

Unfortunately, even though I benefited greatly from excision surgery for my Endometriosis, I eventually needed to undergo a hysterectomy for the treatment of several fibroids and adenomyosis, both of which had begun to debilitate me.  At the time of my hysterectomy, no Endometriosis was discovered (my excision surgery had taken place a year before).  I had removal of the uterus, both ovaries, both tubes and cervix, and my after-affects have been mild compared to that of the previous Endometriosis/adenomyosis/leiomyoma pain.  I do not take HRT (by choice), but do take lots of calcium.  I do not regret my decision, but recognize that it is not an option for everyone; nor would I advise any Endometriosis patient to undergo hysterectomy without exhausting every other medical and surgical option first.

Hysterectomy is not the only, or the most, effective treatment for Endometriosis.  Research all of your options and make an educated decision before undergoing this irreversible procedure.  Your best approach to managing your Endometriosis is teaming up with an Endometriosis specialist and deciding what is right for your own needs.
 

Notes:
(1) "Hysterectomy in the United States, 1980 — 1993;" Centers for Disease Control and Prevention/National Center for Chronic Disease Prevention and Health Promotion-Division of Reproductive Health.  4770 Buford Hwy NE, Mail Stop K20, Atlanta, GA 30341-3717
(2) Hysterectomy-Novak's Gynecology, Jonathan S. Berek et al 1996
(3)  CDC Division of Reproductive Health, 4770 Buford Hwy NE, Atlanta, GA 30341-3717
(4) Hysterectomy in the US, 1988-1990, L.S. Wilcox, et al.
(5) Journal of Obstetrics & Gynecology, April 1994

Copyright © by Heather C. Guidone.   All rights reserved.  Do not reproduce without express permission.