Sex? What is that?

westiemom

Sex? What is that?

westiemom

I am frustrated beyond words. Had a bilateral mastectomy, had stage 3 cancer, then chemo galore, then an oophrectomy. I'm BRCA positive. July will be my 5 year mark, then I'm off arimidex. However, I have major atrophy and was told " sorry with your high risk for cancer not many options for you" my onc recently prescribed Premarin, by gyno said "absolutely not" so I said "look, eating a bag of Cheetos and Netflix cant be the highlight of my evening with my husband" I have Zero libido. Gyno suggested a teeny amount of testosterone mixed with some thing sort of like Viagra to be compounded by a pharmacy in a cream to be used "down there"before sex. Ok, so that might address the sex, but what about atrophy? Gyno is thinking about putting me on vagifem. Anyone on vagifem with my history? Also, I have no energy, anyone with my history on a low dose testosterone for low energy?

tangandchris

There is a forum on here for these issues...Sex Matters I think.

I'm in the same boat as you...I have no libido what so ever, I could never have sex again and that would be fine with me. I know this is not normal, I'm 41 years old and dh sure doesn't feel the same.

((hugs))

Spookiesmom

There is also a thread I Want My Mojo Back

Zillsnot4me

it's called scream cream. Search for it in threads. Also tell your on/gyn. You can get pelvic floor massage to help with atrophy.

westiemom

Thanks! I've tried scream cream, sadly it did nothing. :-(

Zillsnot4me

Did you use the one that's compounded? Did you wait long enough?

SelenaWolf

Go to one of those sex toy shops and ask (hopefully there is a woman employee available to help) about clinical dilators. They are a bit different from vibrators, although they will vibrate. A dilator comes with about four- to five different sized ... er ... "heads". Start with the smallest one until you feel comfortable using it, then step up to the next size. This will gently help stretch you out. The lady who sold me mine said that she, often, sells them to cancer patients who are struggling with atrophy. In my case, it's helped make things much more comfortable.

kareenie

or better yet you can buy them online.

momand2kids

My gyn told me I had a "shrinking" vagina in august--- she recommended pelvic floor physical therapy-- I started in september-- mostly finished up in december--worked with the therapist and dialators-- like a miracle--- things just opened up--- the muscles had gotten so tight---

Now, I am supposed to use the dialators x per week-- have not been exactly doing that-- but having more sex is also a solution--

I too have lost all desire--- so it is hard to deal with--but I think for me the first thing was to do the therapy so I would not be afraid of any pain with intercourse--- I have not tried too much on the intercourse side, due to lack of desire on my part-- and i think h is having a testosterone thing... but when we do, the good news is that the muscles have been worked and are ready to go.....

Highly recommend this treatment... insurance covered it....

Alaskafurrycat

Ok This is what is beginning to work for me.....

when aroused we should be moist (pause for long hollow laugh as NOT aroused or Moist) I could write loads about the situation and how I ended up here but in short this is what seems to be working for me...it's just a moisturizing regime and it's had the side effect of making me feel more normal and therefore actually somewhat aroused .....

Bought a lubricant applicator from Amazon see

http://www.amazon.com/Siam-Circus-CleanStream-Lubr...=sr_1_2?ie=UTF8&qid=1424024151&sr=8-2&keywords=lube+shooter+syringe

or similar one

also purchased water based lube

http://www.amazon.com/Water-based-Longlasting-Lubr...=sr_1_2?ie=UTF8&qid=1424024239&sr=8-2&keywords=slippery+stuff+liquid+personal+lubricant

Began everyday to apply lube after brushing teeth ....didn't mention this to my OH so No pressure expectations

After a few weeks I began to feel different ...even normal (well more normal lol)

Also bought a discreet vibrator to remind my body of possibilties (amazon again)

and when I eventually took the plunge to try sex again also took a relax/destress pill that I had left over from diagnosis (which I didn't take then)

I didn't realize how nervous/tense I had become....

so for 5 days I tried taking just one pill before bed and tried sex again and it was Ok/possible /not absolutely bloody awful/not very good but not a complete awful disaster...a vague hint of possibilities

I didn't take any more pills after that but have carried on moisturizing daily ..adjusting how much is trail and error

Also used KY Jel when I ran out of the other and it worked ..bit trickier to get in the syringe but possibly higher lube effect and now after perhaps a month or a bit more of this ...

Lat night I actually had pleasurable sex.....

So I'm no dr but it's looking very promising ..hope this may help someone else xxx

momand2kids

Alaska

thanks so much for this--- I had been trying to be very regular with Replens--they say you only need it every 3 days, but I find I need it everyday--I have it on auto subscription with Amazon-- I try to use it at night--do you use the lubricant in the am or pm? What do you use? I have Slippery Stuff--- that works pretty well as well....

Alaskafurrycat

I use it each evening but I don't think it really matters when ...it's kind of separate from sex.... it's a get everything healthy sort of routine..and I generally use Slippery Stuff..I too don't find it lubrication works for me unless I use it each day....although I think I have reduced the amount I use each time ..it's a real guess work...and sometimes I go add some more.

To start with I probably used too much ..a whole syringe full...haha but it does remind you how your body felt when it was in the mood ..which was a good reminder ) now I use about a 1/4 of that perhaps .

I have found that my body is starting to feel different (in a good way) so I'm quite careful not to miss a day if I can help it.

Also I used to be really prone to uti's and I've found that they too (fingers crossed) have not been a problem lately.....taking Vit C tablets also helped too (Husbands explanation changing the ph level of pee makes it less bug friendly)

hope this is helpful

Momine

Alaska, brava! Patience and persistence do pay off it seems.

amylsp

I was stunned at how quickly sex became unbearably painful after starting chemo. I'm 53 and was still menstruating before Chemo started. Sex had never been painful. As soon as chemopause hit though, the switch over to pain was almost immediate. I had tearing, bleeding and pain. So I started using Replens every three days and coconut oil on all the days in between. Waited three to four weeks for the tear to heal and tried sex again. This time with lots of lube. It was more bearable, but still not pleasurable and I had tearing and bleeding again.

Just tried sex again recently after waiting 6 weeks, and had tearing again! The tearing is always right at the opening to the vaginal canal. So it's clear to me it's not just a lubrication issue. At the risk of being too graphic, I recently measured my husband's 'girth' when erect and am buying three different sized 'sex toy' items that start at one inch smaller than my husband and work up towards 1/3 inch larger than him. I hope that by being very proactive, this will nip things in the butt, so to speak. I'll report back if we have any success!

Trvler

Thank god there is a thread about this. I have had two attempts at sex in the last few days, both unsuccessful. I am not having pain or tearing…but just can't get there, which is highly unusual for me. I am not sure where to start. I don't think I am overly dry. Just not sure where to start.

Cheesequake

amylsp, how are things working out for you?

amylsp

Hey Andi, My husband and I have been avoiding penetration for now while I work on increasing the elasticity to the area. Things have definitely been improving in that department due to my 'online purchases', but it's very slow going because of the tearing. I'm nervous because I will be starting the hormone treatments soon and that might make the situation worse. So I'm trying to stay ahead of the game as best I can!

Feel free to PM me if you want more specific information. But, for me, it seems like what will work best in the long run is setting aside an hour or so once or twice a week to 'exercise' the vaginal tissue, for lack of a better term.

LincolnHS65

I'm 68, and have been cancer free for 18 years. My breast cancer started in 1995, estrogen positive, lumpectomy, radiation , and Chemo. Then in 1997, cancer mastisiezed on my spine, ate a hole in my spine, which will repair itself I'm told, had more chemo, and a trip to the University of Arizona in Tucson for a Bome Marrow Transplant. (Which I'm told they don't do this procedure anymore for Breast cancer, as reg. chemo is just as effective) then 18 months later the cancer appears in the other breast. Treatment this time was a double mastectomy. I was already on Arimidex and on continued on that for the next 15 years. During this time. My mood, my personality began to change, as well as my body. Sex became very painful, and I evan lost the desire to for any kind of intimmacy . My husband at the time could not deal with the changes that were Happening to me so we divorced 10 years ago, so now I deal with this by myself. I am off of the Arimidex but now have congestive heart failure from all the chemo and now take approx. 10 medications to deal with that problem. I thank the good Lord that I'm here to talk about it, and to know that I'm not the only one with these same issues.