Why we need awareness #7

There are but two days left in March, but the campaign to increase awareness and urge research into cause and elimination of endometriosis does not need to end. Our voices remain strong as we continue to band together – on-line and off. Regardless the media carrying out message, it is still being disseminated to the many millions of women world-wide who need to hear it.

With that being said, I am making this post (which, depending on my schedule could very well be the last one for March) pack a mighty punch. It will be fact ridden, and I promise you, validate what many women think about hysterectomy and failed endometriosis treatments.

The subject being discussed is the quality of life and sexual function in women post-hysterectomy. This is a very delicate subject, and for some, may be upsetting. If this is the case for you, you want to skip this article. On the other hand, if you have had a hysterectomy and are experiencing pain and depression and obtaining inadequate support from your health care provider, this article may give you the information you need to sway their opinion.

One night I was doing research and found the article I will discuss below. It caught my attention because a 35 year-old woman had e-mailed me the day before. She had chronic pelvic pain and decided on a hysterectomy. It was always assumed she had endometriosis, and adhesions were found, but no implants. 7 months after lap, she decided to have a hysterectomy. Her pain had caused her to go on medical leave from her job and she had had enough! She then found my blog 3 years post-op because the pain had never stopped. She had been tossed from doctor to doctor with no answers.

In a 2004 study published in the October issue of The American College of Obstetrician and Gynecologists, Dr. Katherine E. Harman, Cindy Ma, Dr. Georgine M. Lamvu, Patricia W. Langenberg, Dr. John F. Steege, and Kristen H. Kjerulff, the researchers state, “In the United States, more than 60,000 hysterectomies are performed each year; of these, 10% of women have pelvic pain as their primary preoperative indication for the surgery” and that of these 10% “22% of patients with pelvic pain before hysterectomy continue to have pain after surgery”.

I don’t find these statistics too surprising. I have heard from countless women – on a global scale – reporting the same. They had hysterectomy for unrelenting pelvic pain. Their endometriosis was being controlled. A few were just tired of living with ovarian cysts. But after the surgery, and the recovery, the pain remained. It returned. It was… there.

This study aimed to take a population sample of women experiencing pain and depression after hysterectomy. 1,299 women were included – women who had hysterectomy for pain resulting from benign conditions. I stress benign because one could expect depression in women having a hysterectomy for malignant conditions – such as cancer.

They measured these women on functionality, both at 6 and 24 months post-op. Measurements evaluated the “presence of pain, health-related quality of life, and sexual function”. Three groups of women were studied: (a) women with pelvic pain and depression, (b) depression alone, and (c) just pelvic pain.

At 24 months post-op, the women with preoperative pelvic pain and depression had “3 to 5 times the oddd of continued impairment of quality of life”.

What is not discussed in this article is the use of hormone replacement therapy during the study period. The participants were 18 years of age or older.

The authors note, “Gynecologic surgeons are appropriately concerned that patients who are struggling with depression and/or pain before surgery be at especially high risk for poor operative outcomes such as slow recovery, persistent pain, or developing new symptoms.” They conclude that performing a hysterectomy on women with pelvic pain and depression could actually do more harm than good.

From what I see, there has yet to be a long-term follow-up study concerning post-op hysterectomy health and function.

This study does focus on women who had depression and pelvic pain before surgery. And by doing so, may contain a bias towards the belief that women with depression have lower success rates for treatment. But one should ask, how many of the women’s depression was a result of the pelvic pain? This needs to be studied and quantified.

To me, this study read more like evidence to support the attitude some clinicians have with chronic pain patients – just pass them off.  

How does this article relate to “why we need awareness”? If you’ve stuck to this point, you deserve an answer. This article reinforces the depressed pelvic pain stereotype. It reinforces attitude that women with preoperative depression are more likely to be unresponsive or under-responsive to the surgical therapy. Having these prejudices and stereotypes circulating can lead to increased mental anguish.

I am not condoning hysterectomy for endometriosis in this post. That is something for the patient and her physician to discuss. I am not a doctor. I do not have the ability to condone hysterectomy; it is merely my personal belief that not all pelvic pain should result in hysterectomy.


One response to “Why we need awareness #7

  1. Very nice post!! I like it!!Very few of us know that endometriosi is the one of the most common cause of infertility, basically it founds in 6-10% of women. symptoms of this disease is different depends upon the stages of activeness of endometriosi.

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