HORMONES -
"MISINFORMED CONSENT"

It’s OK to ask questions about Hysterectomy

by Lise Cloutier-Steele, author of
Misinformed Consent – Women’s Stories about Unnecessary Hysterectomy
ORDER ON LINE

--------------------------------------------------------------------------------

It’s been over ten years since I had a hysterectomy. Back in 1991, my family physician told me I had endometriosis, though no diagnostic measures were taken to determine if I really had this disease. I didn’t. The post surgery report revealed that all my organs were perfectly healthy, so as in the case of many other women, I didn’t need to have the hysterectomy. At the time, I didn’t think it was right to question a doctor’s advice or seek another medical opinion. These days, however, my personal health care is a responsibility that I take very seriously, and so should all women

No one prepared me for the many side effects I began to experience just days after my surgery, and no one told me how hysterectomy would change my life. If you are contemplating having your uterus and your ovaries (oophorectomy) removed, you owe to yourself, and to the people who love you, to do the research.

As confirmed by many gynecologists I have consulted over the past four years, surgeries like hysterectomy and oophorectomy should be considered only as a last resort, and only if cancer has been detected. But according to the latest statistics, 90% of hysterectomies are performed for reasons other than cancer! How can this be?

A new report addressing this issue was published in Canada last year. It confirmed that Canada’s situation is similar to that of the United States. Dr. Donna Stewart, professor at the University of Toronto and chair of Women’s Health at the University Health Network, led the expert panel on hysterectomy practices in Ontario.

According to Dr. Stewart, there are many factors contributing to the high rate of hysterectomy. For instance, many doctors are unwilling to explore other treatments with their patients. This is an unfortunate situation in itself, because if a woman is not offered less drastic options, she is not given the opportunity to make an informed choice.

Education and social class are two other important factors, and Dr. Stewart’s report shows that the hysterectomy rate is highest in poor, rural regions where the level of education is low. Similarly in the U.S., the hysterectomy rate is highest in the southern states. And surprisingly, some women view hysterectomy as a permanent solution for birth control, while others feel it’s the “thing to do” because it’s what their mothers and sisters did before them. In any case, none of the above explanations justify the current situation of unnecessary surgeries performed on female patients, but all confirm the need for greater education efforts to help women and their doctors discuss other alternatives.

Aftereffects of Hysterectomy
In addition to the risks involved with the surgical procedure, the potential side effects of hysterectomy, and/or oophorectomy, can be very debilitating. Many of the books I read list the following aftereffects: depression, anxiety, osteoporosis, increased allergies, arthritis, loss of orgasm, loss of sexual desire, loss of sexual function, hot flashes, night sweats, migraines, weight gain, thyroid dysfunction, bowel dysfunction, memory loss, generalized fatigue, loss of bladder control, stress and urge incontinence.

If your ovaries are removed at the time of the removal of your uterus, you will experience surgical menopause, the side effects of which are greater than those experienced by a woman undergoing natural menopause. This is not a new phenomenon. In fact, gynecology textbooks dating back to 1950 confirm that this is so.

Many gynecologists believe that hysterectomy linked side effects can be controlled with estrogen replacement therapy. Not so. Some women may be hypersensitive to estrogen or other traditional forms of hormonal replacement therapy. If you happen to be one of those unlucky women, you may experience some or many of these side effects: rapid weight gain, water retention, loss of bone mass, breast tenderness, abdominal cramps, nervousness, irritability, and recurring vaginal yeast infections.

Problems like these can seriously impact the quality of a woman’s life. Imagine the stress of having to cope with any one of these difficulties while maintaining a full-time job. Is it any wonder that many women become reclusive after hysterectomy?

Of greater concern, is the fact that we now have strong evidence that long term use of hormone replacement therapy is not safe. It can lead to an increased risk of breast cancer, heart disease, stroke and blood clots.

Long term use of hormone replacement therapy is not an option for women whose ovaries are surgically removed, unless they don’t mind living out the rest of their lives as boiling kettles. And of course now that our suspicions about HRT have been confirmed, the decision to retain or remove non-cancerous ovaries should be weighed very carefully. Doctors would not recommend the removal of a male patient’s testicles once his family was complete, so why subject women to unnecessary castration?

Great Sex? Maybe not . . .

Some women claim that sex has never been better, however, great sex following a hysterectomy is NOT a guarantee. Why? Because hysterectomy is not a simple operation. It happens to be a very complicated procedure requiring great surgical skill to avoid damage to the bowel, bladder and vaginal walls. If perforations are made during this surgical procedure, these can result in further scarring that may interfere with a woman’s sexual response.

When considering a hysterectomy, women should know that the surgical removal of the cervix means that the surgeon will shorten the vagina, a procedure that often results in discomfort with intercourse. And if the nerves going from the cervix to the clitoral area are damaged, it may diminish your orgasmic response. These outcomes of hysterectomy can be avoided if a woman insists on keeping her cervix, especially if it is non-cancerous.

In its 1999 pamphlet on Understanding Hysterectomy, the American College of Obstetricians and Gynecologists (ACOG) states clearly that if the hysterectomy procedure required vaginal shortening, deep thrusting with intercourse may become painful. It makes the following two recommendations: 1) Being on top during sex or 2) bringing your legs closer together may help. Any woman will tell you that intercourse wouldn’t be pleasurable, if at all possible, if she had to keep her legs closer together, and women living with the condition of a shortened vagina will tell you that attempting the “on top” position would be excruciatingly painful. That’s why it is so important to get all the facts on post-hysterectomy sexuality before you get to the operating room.

Ask away!

If I had to do it all over again, here are a few of the questions I would ask my gynecologist. I would ask these questions again and again until I had a clear understanding of all the consequences that can arise from this surgery.

1. Why do I need a hysterectomy?

2. If I don’t have cancer, why should I agree to have my reproductive/sexual organs removed?

3. Have all the proper diagnostic tests been taken?

4. Are there any other less invasive treatment options for me to consider, and if so, what are they, and what are the risks involved with these options?

5. What are the risks involved with the surgical procedure of hysterectomy itself?

6. If my ovaries are removed, will I be able to maintain a healthy libido?

7. If my cervix is removed, will my vagina be shortened?

8. If my vagina is shortened, will sex be the same?

9. If my uterus is removed, will it have an impact on orgasm?

10. Will I be going into menopause?

11. What’s the difference between natural and surgical menopause?

12. Can hormone replacement therapy provide adequate relief from all the side effects I may experience following a hysterectomy?

Hysterectomy is an irreversible operation with potentially devastating consequences. It is your health right to ask questions, and insist on answers. If you do, you can make a truly informed choice, one that is right for you.

Lise Cloutier-Steele is a communications specialist and a professional writer and editor who has survived a traumatic experience with hysterectomy. She is the author of Living and Learning with a Child who Stutters, and she is the recipient of a Canada 125 Award in recognition of a significant contribution to the community and to Canada for her volunteer efforts to help the parents of children who stutter. She has appeared on Canada AM, the Women’s Television Network, The Phil Donahue Show, The Body and Health Show, CTV News, and several other media to talk about the important topic of unnecessary hysterectomy in North America.

MISINFORMED CONSENT-
WOMEN’S STORIES ABOUT UNNECESSARY HYSTERECTOMY

Contact Information: Barbara Kimmel, Publisher
(800) 595-5440 / (908) 879-6625

(Revised Edition) ISBN 0-9700908-6-2  Spring 2003 $16.95  

Also Available from Next Decade, Inc., www.nextdecade.com / (800) 595-5440, or at your favorite bookstore.