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DISCUSSION: Libido, 2005:
I am really sorry I haven't followed this discussion here until now.
Those of us who feel the loss of libido are not a minority as some authorities would have us believe. We are the tip of the iceberg. There is a lot more pain over this than there is discussion.
Very, very few of us were treated with any real degree of understanding or respect in terms of providing us with even basic counseling or understanding of what it can be like as a result of treatment for bc.
I feel VERY strongly about all of this. I think we really do "owe" it to those sisters yet to be treated to do much more to push for more counseling and more explanation from health care providers PRIOR to treatment.
It has been suggested to me that if health care providers actually did that, many women would be too scared to go through with treatment. That is a LOUSY answer. Women need to have better knowledge to make better choices for themselves.
I have been posting about this on various sites for some time now. Here is a post from the past year:
10 cents from an over-50 bc survivor... Posted by AlaskaAngel on March 31, 2004:
In the pile of things to consider, even if it is only a small part of the picture, I truly feel I owe you some description of what it actually has been like to enter complete menopause so quickly, because I had NO clue prior to accepting chemo/tamoxifen. For those who have heard me describe it before, I am sorry if this is repetitious.
If someone were to have given me this description prior to choosing menopause I still would have had a hard time actually "knowing" exactly what it can be like... It is like having a lobotomy of the part of my brain that had experienced so much joy and pleasure as part of being a sexual, sensual human being. It also was a betrayal, because neither doctors nor nurses prepared me in any way for it, as though losing that part of me was something neither I nor they could possibly have cared about very much. I work with many of these other medical people and love a fair number of them... but none of them ever had chemo... For me, it was like having a huge, tender part of me amputated without anesthetic.
Losing one's hormones so suddenly also has another effect that I did not see coming. Although it does level out my mood so that I have fewer highs or lows, I feel it has also taken away the intensity of colors, sounds, taste, and touch...
I was strongly premenopausal by test prior to starting chemo, etc.
I do not know if you will have the same experience. I do not think this is how older women generally experience menopause. I think abrupt menopause is truly a much greater shock to the system and the permanence of it is something that continues to be painful in its own way.
........end of prior post......
So, does that sound familiar?
What did I experience when I opened discussion with my doctors about this?
In spite of being very shy with my male oncologist I brought it up. (Why, for God's sake, can't they ASK us?.... My answer: They don't want to deal with it.) He said he would order a lab test to see what my testosterone level was. We had the test done and he never told me the results. The next year at my annual visit I brought it up. He just said he "understood". He mentioned that for dryness I could try using the E-string, but that it wouldn't help with libido. I appreciated the suggestion for what it was; merely a way to improve the mechanical problem of sex so that my partner could be satisfied and perhaps that would be of some help with maintaining a relationship. (Why is it that all medical providers think that suggestions to help lubricate are so helpful to us that they don't have to discuss anything else, as if we are mere robots successfully going through the motions?)
I brought it up with my male internist. He too ordered another testosterone level and never told me the results.
I brought it up with a female doctor who subbed for my internist. She had no comment. She ordered the E-string for me. It helps slightly but only with lubrication.
Since then I have been searching for a better solution. I am ER+, PR+, HER2+++. I am currently in a clinical trial titled:
Low-Dose Testosterone in Improving Libido in Postmenopausal Female Cancer Survivors
Despite the advanced education that my health care providers have, they did not help me to find this clinical trial. In fact, I would guess they would be opposed to it because of the concern that testosterone (as I understand it) breaks down into an estrogen precursor in the body. But like one of the women who posted above, I truly feel that health care providers should provide the information and let ME decide. It is NOT kinder or more professional for them to leave me to stumble around trying to find some answers to a very real and very painful result of the treatment they recommend.
The clinical trial is only 8 weeks in duration. I am halfway through the trial.
Frankly, in my mind breast cancer is an ENDOCRINE DISEASE and toxic chemicals are a very poor solution to what is gradually becoming an EPIDEMIC among women, who are left immunologically impaired, physically impaired, and emotionally impaired.
Please find a way to talk with sisters who are only now being diagnosed, not to change their mind about any choice they desire, but to be sure they have more genuine knowledge about the choices they make as they travel this road.
AlaskaAngel
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