Stillhere's poll question #3

[AlaskaAngel]

again, sorry... I see no option for doing it differently... This is the entire question, which is cut off by the poll:

Have you stopped having intercourse after AI's or chemo due to lack of interest or extreme discomfort?

[Erin]

Well, lack of interest is certainly a problem when you don't feel well. I am lucky that my baldness and scars are not seeming to affect my DH. But I do have to admit to using "locally grown pharmacuticals" (which I was given by a friend for nausea) as a bit of a boost to the old libido. I know some of you may be shocked, but I look at it like any other medication. And really, it has much less effect than most of the stuff they give us :-) I am quite anxious about how all of this will effect my sex life in the long run. I look forward to whatever others have to say on the issue....

[theresaw]

I have lost interest, but I still try to enjoy it. Sometimes it is uncomfortable. I feel sorry for my husband because before bc i was all over him, now it is the other way around only thing is I have to be talked into it. I have brought to my onc's attention, she seems to think everything will return to normal. However, I think because of the chemo I have been knocked into menopause, so this probably also contributes to my lack of interest. I am only on Herceptin now, since Oct 06, until Oct. 07
TheresaW

[Diane H]

I do not have any interest in sex, chemo put me into menopause and it's downright painful often. I just wonder though, doesn't drive just wane as we get older anyhow, i know even before my diagnosis and treatment it just wasn't as appealing a thought as it used to be. I'm in my fifties now. I wonder what's considered "normal". I've heard testosterone can help shore up libido too.

[AlaskaAngel]

Desire drops off some for most women who have never had chemo/hormonal therapy, but continues into the later years to some degree more commonly than not.

Oprah had a program over 5 years ago about use of testosterone for libido, talking about application directly to the clitoris. The general discussion about testosterone can be confusing because some say it works, some say it doesn't,but the difference may be based on how it is applied or used, and the concentration of testosterone used.

I was a participant in the national clinical trial for the use of low-dose testosterone for breast cancer survivors. However, for the trial, testosterone cream was applied to the skin and specifically no where near the genital area. Trial duration was 1 month, so that too may be something of a variable.

A testosterone patch has been designed for women but has been on hold for ages and ages, pending approval.

There is also at least one other substance that is or was being investigated by clinic trial that hopefully might increase libido.

I don't consider this a minor issue for women. This is one reason why I hope especially those women who are early stage and who can benefit from tests like Oncolink Dx to avoid some of the toxicity of chemo, do so.

AlaskaAngel

[Hopeful]

No chemo for me, but I have been on AI's since Oct. 1, 2006. Prior to my bc diagnosis, I was diagnosed by my gyn as having atrophic vaginitis. It was already interfering with my relationship with my SO. I started using Replens moisturizer (non-hormonal) when I knew I was going on AI's. I had my annual exam with the gyn today, and learned that my condition has deteriorated dramatically, with now severe atrophy and stenosis. The stenosis is so bad that the doctor is not certain she was able to gather enough cells for the lab to read the pap smear. I do not want to go on like this. I see my onc tomorrow for my regular appointment, and, I tell you, something's gotta give (it sure as heck isn't my you-know-what!)

The worst part is, my gyn is an expert in menopause health issues. She told me she was part of a trial by a drug company a few years ago with a drug to ward off osteoporosis. The drug failed to show any effect on the bones, but was an incredible remedy for vaginal atrophy, and totally non-hormonal! The doctor said the drug company had hoped that the FDA wouldn't make them go through the entire routine of recruiting and setting up a new study to demonstrate efficacy for vaginal atrophy, but the FDA would not allow the drug company to use the results from the bone health test for vaginal atrophy efficacy, and the company decided they did not want to spend the money to go through the testing all over again, so the drug is now not going to be marketed.

Hopeful

[Hopeful]

Talked to my onc today about the atrophy. He asked me to have my gyn send him a letter giving him her impressions and reccomendations. He is going to consult with the bc expert who will be giving the monthly seminar at their practice next week, and we will explore options at my next appointment in three weeks.

Hopeful

[Sue II]

Geez I feel really silly to be so reticent to discuss this topic that I got an anonymous email address so that this won't turn up if someone googles me. But I realize that these posts are not private and somehow the idea of, say, my kids, reading about my sex life just doesn't sit right. And these posts do show up when googled.

This is an important topic. I would like it if the responses could be split into those who have experienced a change in level of interest/libido, and those who have significant pain (which would lead to the first issue but is not really the same thing). There has not been a change in libido for me - that's never been high but I did always enjoy myself once things got going. But since chemo and two years of an AI (stopped the AI in 2004), the pain issue has increased to the point that we've pretty much stopped trying - just too much frustration and time involved I guess. It's not a lubrication issue, although in the beginning it seemed that it might be so. I use an Estring and we have tried every lubricant known to man. There's something else going on and it hurts and it takes a very long time to get past it. I've finally decided to address this no matter how embarassing it is to me to talk about it, and I have an appointment with my gynecologist next month to ask for help.

Is it too late to split the poll into 1. lost interest/libido, OR: 2. pain?

Anonymous for reasons stated above.

[AlaskaAngel]

Sue,

Splitting it into just 2 categories would be confusing for those who feel they have both pain and loss of libido. I can start a brand new thread with the 3 choices if that sounds reasonable to you?

Before I do.... does anyone else have any comments?

AlaskaAngel

[Lien]

I went off Zoladex and Arimidex in Sept. 09. 2 weeks ago my period returned and my libido is much improved. To put it bluntly: We've had more sex during the past month than we had during the past year. It's a great feeling. However, I am more worried about recurrence now. I have a small mosquitobite-like spot on my nipple (contralateral) which doesn't really worry my surgeon. He doesn't think it looks like Paget, but if it doesn't go away on its own, he will do a biopsy next month. There's no discharge, no retracted nipple, no scalyness, no itching, no pain. It's just a raised area on the nipple and it doesn't seem to change. We took a picture to have something to compare it too. There are no palpable lumps either. Weird.

Should I or shouldn't I get an ooph? I would like to see some stats on risk of recurrence for my situation, but can't seem to find them. I'm ER/PR +, Her2 ++ and 50 years old. Had 5 years of Zoladex and Arimidex, but my stubborn ovaries bounced back from that, determined to show they were not ready for The Change yet. Sigh. I like the return of libido, but could do without the periods.

Love

Jacqueline

[tricia keegan]

My desire stopped when chemo began and after that arimidex did'nt help.
We had financial issue's at the time too which did'nt help!!!
I have no libido at all after treatment truth be told!!!

[Jackie07]

I just purchased Replens (long-lasting femine moisturizer) per Marianne's (Harrie)advice. Haven't tried it yet. But Hubby has already got much better mood just by knowing that I would make an effort... The extreme discomfort/pain caused by the astrophy/dryness is a 'cruel and unusual' punishment that nobody should have to endure.

[bashmaz]

Intercourse - yes; sex - no. And now that we are empty-nesters our "sex life" is relaxed and fun.
-Marianne

[MaineRottweilers]

After chemo 4 it simply became too painful and my interest waned more from anxiety than anything. Now, several months post chemo, the pain is much less and I'm almost ready to enjoy it again. I think a few more weeks and I will be back to pre-chemo ability.