Libido is lousy and ...

[starwishn2]

I am experiencing a lot of pain and dryness as well. A LOT. Becoming intimate has become so frustrating. My dear husband is so sweet and understanding but I am at a loss at what to try next. It's such a private subject and was difficult to approach with my oncologist. When I finally mentioned it - he told me to use creams but nothing with estrogen (as I am ER+/PR+). Ok.. that was not helpful. Nothing OTC has worked and the several I have purchased online aren't much better. Does anyone have any suggestions? It's hard to get my libido cranked up when the thought of how painful the end result will be - pops into my head.

Jeri

[IrvineFriend]

It is personal and I am going to have to deal with it as I'm being put on an anti-anxiety med that kills the fun almost immediately. BTW, I talked to my onc today about my predisposition to bladder infections related to intimacy and asked if I should avoid the entire act during my TCH chemo regimen starting Thursday. He did say that's the first time he's ever been asked that question but thought it wise if possible. Even gave me some ideas on alternatives which was kind of cute (and that I have to google soon). And I thought I was pretty worldly!

What about standard K-Y? And honestly, men can get by with other methods. Perhaps use this opportunity to expand your and his horizons

Jeri, there are probably so many of us with this EXACT question but are hesitant to ask. I probably would have gotten around to it so thanks for doing it for me. We lose enough, and then this!

Your husband very well may have some ideas of what would keep him "happy" and that would keep you from experiencing anything unpleasant. Or that may increase your libido/experience (which is what I'm voting for). I think the key is to be able to talk to your husband openly and honestly and allow him to participate in alternatives as you enter this stage of your life. When I Google what my onc suggested I'll foward it to you. Obviously he's been faced with this issue before and cares enough to address that non-medical aspect of his patient's life. Or he's a total perv.

So many of us face this particular form of BC at a relatively young age when this kind of intimacy was still a part of our normal lives. My BF and I have already discussed this likely scenario and have come up with fun ways to keep us both happy (more like him happy because if what I read is true, I won't give a rip).

Feel free to PM me if you want to talk about this further. It's been on my mind, especially with asking my onc if it should be off the table entirely during my entire chemo experience.

-Julie

[snolan]

I was ER/PR+ too but my Dr still said to use an estrogen based cream I use it once a week and she said the risk are very low your body only absorbs a small % of it. It has helped a lot! Almost taken all the pain away, only if I forget to use it does it bother me a little.

[starwishn2]

Thanks Snolan... I will ask again. Was it your oncologist that said "ok" or your GYN doc?

[snolan]

My Gyn was the one who suggested it I passed it by my Onc and she was in agreement. She just said don't use the applicator just put some on your finger in you know the rest. I got some samples from my Gyn and they have lasted me a long time. You start for the first week using it every day then next week down to everyother then third week just once from then on out.

[roz123]

boy can I relate...ouch and double ouch
menopause at 44 - what a horrid thing
on bco.org some women have suggested "scream cream" - its not OTC so I think you will have to ask your PCP about it

[roz123]

omg Irvine - I laughed when I read your post...onc perhaps being a perv. Reminds me of when I went to see my eye doctor (he knows my history) and I was complaining about how dry my eyes are and he says "well you know its menopause, it dries everything out, eyes, vaginal dryness, Im sure you are experiences all of that" omg did he just use the "v" word. I joked to my husband that I came out of there with a script for eye drops and K-Y!!!!

[europa]

Two words: Lou Paget.

I officially know what a dog feels like when they are neutered. I have no desire whatsoever however I know that I'm not the only one that matters in my relationship. So I bought the first book and took a class taught by Lou Paget. Knowledge is power. There are tons of gels, creams and other things that can help. Some gels are water based while others or oil based. Knowing which one to use is a big deal. Also, she goes into techniques to satisfy your hubby without intercourse, which for me is fine. I'm just never in the mood.

[chekmark]

My oncologist prescribed vagifem for me. It has very little estrogen and she said it wasn't enough to cause alarm. It has helped quite a bit but I still use a lubricant but it is so much better. I insert 1 twice a week, the first week it's every day. It also help with the hot flashes but not a lot dang it. I hate those stupid hot flashes. Good luck.

[jaykay]

My first time with bc, my oncologist prescribed "estring". It's a vaginal ring that stays in for 90 days. I was also er+ and she was not worried about the tiny bit of estrogen since I was on tamoxifen and then femara. Didn't even notice it was there after a day or so.

It's supposed to have the least amount of estrogen out of all the creams. It also helped with some urinary tract issues (a big plus).

Best
Janis

[starwishn2]

Thank you ladies!! I appreciate your willingness to share. Apparently NOTHING is sacred to cancer... it messes with everything.

I laughed out loud europa and roz! AND I'm going for Lou's book. I'm fine with no action as well but....

Jeri

[vlcarr]

This is timely. Like Janis, I was just prescribed the ring by my onc. I could not take it any more. The lack of desire was bad enough but the dryness became so bad some days it was uncomfortable to walk! I do have an understanding husband and the last time was so painful we just gave up I think. Glad to read the other suggestions. I did not know the ring was what I would be getting until I picked it up. I had flashbacks of years ago attempting to insert a diaphragm and the thing slipping out of my hand and flying across the room. It was pretty hysterical. I had to use some lubricant to even get the ring in the Sahara. I've had it around 2 weeks now and I think it's getting better but have preferred another method. However, they did tell me she would prescribe the safest possible. Like you guys, I could really care less. Maybe this will help.

[dchips1]

After working for a GYN doc, he prescribed Macrobid, capsules (nitrofurantoin) 100mg 1 after any intimate encounter that involves stimulation around your urethra area. And immediately void after your time together is up. take 1 next day as well. Prevents nasty UTI/ bladder infections. This works for me very well, without then the next day I am in massive pain when urinating.
He also used to say to soften tissues around the opening use olive oil, (PLAIN no extra spices!!), massage into the tissues and slowly stretch the tissues.
I was 35 and had a hysterectomy, 37 dx with stage 4 breast cancer, and I so need so rehanging of the bladder and support of the rest of the plumbing. This is low on the priority list, but it does cause me distress not being more intimate more often with my husband.
Darita

[nsebesta]

my nurse at MDAnderson said to use olive or coconut oil! Haven't tried it yet though.

[Joanne S]

haaaaaaa--- You guys cracked me right up!!! I went through that too, it's been so long, I forgot what it was like.... never even think about it any more.
The olive or coconut oil sounds like it's worth a try---the natural route....

[Debbie L.]

[FONT=Garamond][SIZE=4]It's good to raise this issue often, so those who are just beginning the frustrating experience will have some information.

First off, I will say, from my voice of experience, that it's not good to just keep trying to make this work, when there is pain. The tissues involved are not only dry, they are unusually thin and much less elastic than normal and they will heal poorly. If it's uncomfortable, stop and try something anatomically different, in the short-term.

For the longterm, there are some options but most of the ones that actually work involve hormones. I am pretty sure I tried all the (non-hormonal) lubricants known to man, and they just aren't enough (probably because, as I said above, the tissue has changed -- it's not just lack of lubrication).

Some oncologists are okay with small amounts of local estrogen or testosterone. There have been quite a few studies measuring how much estrogen is taken up systemically when it's applied vaginally, and it seems the Estring has the lowest systemic affect. But for all the kinds of vaginal estrogen they can measure small amounts of systemic increase, especially when it's first started (the theory there being that the dry tissue is so starved for estrogen that it tends to suck it up more efficiently). This (systemic distribution) does make sense, if you think of the estrogen skin patches (achieving a systemic level high enough to alleviate all menopausal symptoms), and realize that the mucous membrane of a vagina is way more efficient at absorption than the skin.

There have been studies with testosterone also, partly in hopes that it would improve the vaginal tissues while also improving libido. It is converted by the body (via aromatase) into estrogen so theoretically would have the same issues. Although it has been argued that if one is on an AI, that would prevent the conversion. There is also some theoretical concern that some breast cancer cells have androgen receptors which could be directly affected.

So, although they've done all these measurements, there have not to my knowledge been any longterm studies looking at actual results of this, as far as do these women (using hormonal help in order to maintain a sex life) perhaps have more recurrences. I think there was one small study in the past few years (showing no difference in recurrence) but it was small, quite short, just a few years if memory serves.

So some oncologists err on the side of caution and discourage any use of vaginal estrogen. Others err on the side of quality-of-life, in the face of not enough evidence to base the decision on, and allow use of the Estring or teeny bits of vaginal estrogen cream (NOT the full applicator nor the usually-prescribed frequency). All a woman can do is make the decision that feels right for her, and that will be different for each person.It is frustrating that there is just not enough information to give us a clear answer.

There is also the question of whether it matters if the cancer had/has hormone receptors.

I used both the Estring and cautious dabs of Estrace, a vaginal cream. But as I said above, I think too much damage had already been done, and although it was a little better with some estrogen on board, it remained a pain (literally, and in terms of the patience required to complete the act). It's been a moot point for me for years now, alas (due to my husband's health issues). But I remember how important and frustrating it was, and I send my sympathy to all who are struggling with this issue now.

Debbie Laxague

[Lien]

I had similar problems while on Zoladex and Arimidex. I used coconot oil sometimes, but like Debbie writes, it's not just lubrication but also the thinness of the tissue that causes pain. I have a friend who uses Replens, which seems to help her a great deal. I haven't tried it yet, because I'm very allergic to heaps of stuff.

I found that alternative "gymnastics" were the answer for us. There are many ways of being intimate and we developed a nice little pain-free routine. It can actually be fun to invent new ways of doing it. Every time I remember that I used to enjoy having sex, and get going, I find that it's just as pleasant as it used to be. I just don't have the libido I used to have. So I try to make it into part of my routine (wash hair, cut nails, take a long bath, have sex, make shopping list) that kind of thing.

I wonder if it would have been the same if I'd gone through menopause naturally.


Jacqueline

[Debra]

I am with the majority. No libido; severe pain. Just simply avoid "the act" at all costs. Just thinking about going through the motions is painful! The only thing I have found to helping even a little bit is Astroglide. You can buy it anywhere. Gyn recommended it. Works way better than ky gel. But again, I just simply have no interest so the thought of using or trying anything anymore has left me. I feel sorry for my hubby. I pretty much have been this way since menopause over six years ago. Not that I was a firecracker before but at least I could go through the motions even if I didn't feel like it. Now, unbearable physically. I guess I will have to "want" to get creative like some of the rest of you and find an alternative but after this long, I think it will take something...not sure what!

[Jackie07]

We'd been having the 'non-sexual relationship' (as was defined by President Clinton type of sex since the initial surgery/chemo/radiation in 2003. Four, five years ago, after the recurrence and more chemo, I was given some white plastic sticks of different size to 'dilate' the area. Never did follow the instruction as it was too painful.

Until I did the hysterectomy/oophorectomy which might have loosen up the area. But then UTI hits every time!
Because of my memory problem in the short-term memory area, I could never really remember (unless I wrote it down - and remember where I'd written it down) when and how we did it.

Anyhow, just went through 7 days 12-hour Nitrofurantoin 100mg cap (substitute for Macrobid) to clear up UTI (lab result showed white blood cell and red blood cell in urine) Now my family doctor is given me a six pill prescription (with two renewals) with the instruction to
'take one capsule by mouth after intercourse' printed on the bottle!

Hubby was asked if he needed 'counseling' from the pharmacist when he picked up the medicine for me. He answered: "No, thank you!" ...

[europa]

I've been experimenting with different lubes...part of my homework from my lovely OB GYN. And I really like Astroglide. But use sparingly...you may slip right off if you use too much.