Notes from the 19th HERS Foundation Hysterectomy Conference

November 9, 1996 Philadelphia, PA

 

I learned...

The HERS Foundation was founded by Nora Coffee in the early '80s, though Ms. Coffee became involved with hysterectomy after her hysterectomy in the late '70s.

There are more gynecological procedures being done now than ever. Hysterectomies are the doctorsí gold mines and surgeries like myomectomy and neurectomy are their silver mines. Many insurance companies pay TWO TIMES as much for hysterectomy as for myomectomy. Besides that, most general OB/GYNs are trained to perform hysterectomies not myomectomies and other uterus sparing surgeries.

Problems after hysterectomy that the doctor probably won't tell you about...

  1. Back problems are common causing discomfort and pain walking, sitting and lying. The reason for this is that during hysterectomy our uteral sacral ligaments are severed. These ligaments anchor our uterus to our skeleton so severed our bones move, hips spread up to one pant size, our sway is effected and as a result we have pain that can be from our head to our toes.
  2. Diminished blood flow and loss of feeling to lower parts of our bodies since the nerves and ligaments are severed.
  3. Loss of sensation not only to our genitals but also to our breasts and nipples since there are nerves that run from our reproductive organs to our breasts.
  4. Chronic inflammation of nerves that are cut and other nerves that are in the pathway of those severed.
  5. Shortened vaginas that make sex difficult to impossible. The length of our vaginas is left up to the doctor's discretion during surgery depending on their idea of a "functional" vagina. They can create a vagina with a length of 9cm down to 2cm. In order to keep vaginas from prolapsing they are often sutured at the top to loose ligaments in our pelvises.
  6. Chronic irritation at the scar at the top of our vaginas.
  7. All the organs move to fill in the space once taken up by our reproductive organs. Bladders are sutured up to hold them off the top of our vaginas causing urinary urgency. Bowels sit on top of or against the vaginal vault, genitals tend to sink into the body and some women because of all this movement of their organs have to place a finger into their vaginas to create a BM.
  8. Diminished or non-existent libido that no pill can fix.
  9. Loss of vitality, exhaustion, chronic fatigue that creates the need for daily naps and extra sleep at night which never leaves us feeling rested.
  10. Loss of all body hair.
  11. Fibromyalgia, connective tissue disease, joint aches.
  12. Panic and fear, cloudy and disjointed thinking.

In addition, many women (including myself) report feelings of disconnectedness from life, a flatness for all things: good, bad, children, lovers, death of important people in our lives...everything. Also a constant need for privacy and quiet plus a general withdrawal from life has been reported. These many problems have placed terrible strains on marriages. The ones that survive tend to be lived more like brother and sister than husband and wife. Women have found they avoid new situations because they feel they lack the coping skills needed to face unknown situations. We find ourselves very concerned about our ability to keep up at home and at work.

Cures

None. Regardless of what we are told, for many women there is no little pill that will put things back to normal...the body is much too complex. Our hormones are not static but in a constant conversation with each other adjusting on a daily, weekly, monthly and yearly level creating much of our emotional lives.

One Dr. who spoke at the Conference said there is almost NEVER a reason for women to have hysterectomies when so many other options are available. Many women believe that a hysterectomy will be the end to their problems but often times it just presents a new and sometimes worse set of problems.

Hysterectomy has been described as "Pelvic Lobotomy" since it is the complex conversation of our hormones with our reproductive and other organs that causes our emotional lives.

"HRT does not exist!" says Nora, as no pill can replace the many hormones, in the same amount, at the same cyclical fashion as your body manufactures.

Be Aware: The consent forms we sign when we go in for surgery basically give our doctors carte blanche to do whatever they want with few to no repercussions from the patient or patientís family. An attorney at the Conference suggested we review the form at home before surgery, cross out the sections we do not agree to and then discuss it with our doctors. Request a video tape be made during surgery.

My Thoughts

I thought the Conference was very interesting. Yes, it was a little discouraging to find out that I am probably facing a lifetime of challenges, some small, some big, but now I know my symptoms have a real, physiological basis and I'll keep looking until I can create the healthiest body I can.

By posting my notes I am NOT saying no woman should ever have a hysterectomy. I personally believe that there ARE times when it is appropriate. I also know from talking with hundreds of women that there are a lot of women who are glad they had surgery, who feel better than ever, who wish they'd had it done earlier. Their experience with hysterectomy is as important to share with women trying to make a decision as are the potential negative side effects. Keep in mind that Sans-Uteri will probably gather more information on the negative side effects of surgery because of its draw: usually only women (or the partners of women) who've not had an easy time with their hysterectomy will contact Sans-Uteri for support (who needs support if its been a wonderful experience?!?).

Sans-Uteri is a forum for the discussion of the physical & emotional challenges hysterectomy can create.

 We are seeking essays on women's hysterectomy experience for inclusion on Sans-Uteri's web site as well as future publication. Essays may be signed with just a first name to protect women's privacy. I believe this could be a tremendous opportunity for sharing and healing. There are no space or subject limitations... if it involves you and your hysterectomy, please, write.

Beth Tiner, Founder


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