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| A HysterSisters Response to FDA Hearing for Intrinsa® |
Date : 03-18-2005 - 08:38 AM - Readers : 6818 |
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Bad News, Good News. Libido loss for Surgically Menopausal?
Dec 2, 2004
Dear Ladies,
I'm writing from my hotel room in Washington DC where I sat in on the FDA advisory committee hearing for the Procter and Gamble testosterone patch: Intrinsa®.
I was able to participate in the public hearing, sharing for a brief 3 minutes. Here is a copy of my words:
"In 1982 my mother died of ovarian cancer, setting in motion ready-made decisions for me and my sister with ovarian cancer familial risks.
"My name is Kathy Kelley. In the summer of 1998 I had a hysterectomy and bi-lateral oopherectomy. I searched online and found very little that was helpful to me so I gathered materials and resources, added a discussion board and launched a website called Hyster Sisters.
"Now, over 6 years later, Hystersisters is the largest online hysterectomy community with over 55,000 members. The Hyster Sisters site is neither anti hysterectomy nor pro hysterectomy, rather, it is an online community of women who give and receive support for hysterectomy decisions and recovery.
"The Hyster Sisters have sent me….to share their stories.
"Many members recover from their surgery and head back into their lives without much fanfare. For others, they return to our website, months or even years later in search of additional support for new health issues. Predominantly they return in search of support for hormone therapy…. many complaining of a missing libido.
"And while we have thousands of personal posts from frustrated members regarding their loss of desire, time constraints allow me to share only a few!
"A 47 year old woman wrote: Since my hysterectomy I have tried all forms of hormone therapy and some herbal treatments. I am beginning to wonder if it’s simply impossible to get back my libido.
"Another woman: I have a check up appointment with my OB/GYN next month and my husband is going to go with me so we can talk about my libido. What is wrong with me? I am 24 years old. I love my husband. Has anyone else experienced a change in libido and how do you go about correcting it?
"A 43 year old woman wrote: Prior to my surgery my libido was tremendous. My husband and I have had 25 years of awesome sex. My husband has been very, very patient with me. We have tried just about everything but to no avail….
"The Hystersisters have sent me…because it is our hope that the medical community find better treatments so that the hysterectomy is truly a last resort. But for those hundreds of thousands who have an oopherectomy we would like hormone options to better restore what we have lost. Our next generation of women is depending on us!
"The Hyster Sisters have sent me….. to ask that you approve this drug: the testosterone patch.. as an option for the libido needs of the surgically menopausal woman."
However, by the end of the afternoon, the FDA Advisory committee had voted to not approve the testosterone patch until more testing was done.
Disappointment does not thoroughly convey my emotions.
I shouldn't be surprised that once again the needs of the surgically menopausal woman were overlooked while a disagreement over what constitutes "more satisfying sexual encounters" as measurable, quantitative stats are discussed by a group of men who apparently still have their ovaries. 
The afternoon ended with sour lemons piled all around me.
That's the bad news...at least from the viewpoint of this Hystersister.
But the good news....
More trials will undoubtedly be coming and you can make a difference. More trials will be required before this product is launched.
Anytime there is a clinical trial that provides a means of testing new medications for hystersisters I hope you will seriously consider participating.
We need you!
We need you to make your voice known through these trials...and by talking to your doctor about your needs.
So while I'm disappointed in today's outcome, let's make lemonade.
- Kathy Kelley
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