Chemo Brain Ok, but chemo vagina? Help!!!!

Wow - I didn't know about these issues being related to BC.  If that's the case, then I may be in big trouble.   I have only been diagnosed for about a month and a half and had lumpectomy and SLNB on Oct. 4.  Next week, I will have a re-excision as clear margins were not obtained.

I am 48, premenopausal and have been having these same vaginal/painful intercourse problems for several years already,  I complained to my family doc about it, and at that time, he really didn't take me seriously.  At first, the symptoms felt similar to a yeast infection, but not quite.  I have had many yeast infections in my life so I thought I just had another one.  But the treatments didn't work.  Then I thought it might be bacterial vaginosis - I have also had two bouts with that.  Finally, I demanded a referral to a gyn.  She could not find anything abnormal, so she sent me to a dermatologist.  It was only then that I got the diagnosis of vulvodynia.  Vulvo what????

Vulvodynia is a generalized pain of the vulva.  For many years, docs thought that these types of complaints were "all in the head" of the women complaining about it.  The pain is very weird and very hard to describe . . . the pain that is there when you're not having sex, I mean.  During sex, it is agonizing and can be sharp shooting pains deep inside the vagina like a knife, or a burning sensation around the opening of the vagina.  But the pain can be there during the day just some times, or all of the time.  Sometimes the pain feels like it is inside, and sometimes the entire vulvar area on the outside is irritated and painful, and almost itchy, but not as itchy as yeast infection.

Here are the suggestions of the dermatologist:  wash underwear only in non-fragrance laundry detergent, i.e. Tide Free, double rinse everything and add baking soda to the final rinse.  Avoid use of ALL soaps of any kind in the shower or bath.  He suggested Cetaphil but I use Aveeno body wash for sensitive skin - no fragrance.  I also use Replens about every 3 days. Yes it helps moisturize, but has done little to help the pain during intercourse. 

When I told my gyn that I had no sexual desire whatsoever, she prescribed Androgel and assured me it would do the trick.  But I couldn't use it because it burned so badly when I applied it to the labia.  So that was out.  Then she said SSRI's can settle down the pain triggers of the nerve endings in the vulva, so I started taking Celexa, as much for the depression as for the pain problems.  But they forgot to tell me that a well-known side effect of Celexa is a markedly lower libido.  Like I needed any help with that - it was already terrible!  So I have recently switched anti-depressants to Wellbutrin, which is not supposed to affect the libido.

I said all that to say this . . . I had enough problems before BC.  It sounds like not only will my situation not improve, but it might get worse.  That is a total downer.  My poor DH - he has already been through enough even without the BC.

 Vulvodynia can be triggered by all kinds of things, trauma or injury to the vulva in younger years, chronic yeast or vaginosis infections, etc.  After reading all of your posts, it occurs to me that BC could be a pretty big trigger for vulvodynia (there are actually a few different kinds of it - lots of info online).

What I found interesting was someone mentioning something about the muscles in the vaginal wall.  There is a doctor in Toronto (can't remember who at the moment) who runs one of the only vulvodynia clinics in the country (Canada) and he sells a machine with vaginal insert attachments (similar to a TENS machine, I think)  that women use to stimulate that area and get it "working" properly again.  It's a little pricey, but just may be worth the investment.  The troubles you ladies are describing are so very similar to what I've already had with vulvodynia,

I do so appreciate all I've read on this thread, as it gives me more ideas of things to talk to my docs about to try to solve this issue, or at least make it better.  I find it very sad and depressing that I really, really do not want to have sex.  The anticipation of the pain is probably as bad or worse than the pain itself, which then makes arousal almost impossible.  I don't know if BC can make it any worse than it already is, but I hope not.

hi Deenah,

just read your post.  I am also prescribed vagifem by my onc.  It took svereal weeks before I noticed a difference.  The biggest change was that I stopped getting a UTI after every romantic encounter!  I also went to a gyn. to rule out any other issues.  He prescribed Estrace cream 2x weekly for atrophy, and to have estrogen blood levels checked.  (they were normal).  I also take Tamoxifen daily so that is the most likely culprit.  So, to be honest, sex is still initially uncomfortable/painful, but seems to be improving.  It's the lack of libido that is bothering me.  Still trying to figure that one out. I check these threads frequently to see what the latest is....

I Look forward to reading about your appt. w/ Dr. Slamon, he is a god in our world!

There's an interesting article in the June 28, 2009 issue of the New York Times newspaper.  Basically quotes a Dr. as saying that Her2+ has gone from being one of the worst prognoses to the best dx you can have with BC. So stay positive and best of luck with everything!

Katalina - Thank you for sharing about your friend.  Hearing stories like that are what keep me going!  I, like you, will keep checking these threads.  I actually picked up some coconut oil at Whole Foods the other day to see if that helps until the Vagifem takes effect.  So far I haven't tested it yet though.

Anyone know where to find the vitamin E suppositories?  I looked at Whole Foods, and couldn't find any that were designated as suppositories.  Or should I just buy the little gel capsules that are menat to be taken orally?  They just sound less messy than the coconut oil.

Hey there, I never found this other mojo thread before.  I wish I had time to check it out.  Deenah, you can buy vit E suppositories.  I order them from amazon.  They are called Carlson's Key E suppositories.  They are not expensive and work well.  I went to a Sexual Health Doctor at MSKCC and she said you can also insert the vitiamin E gelcaps just make sure to prick a small hole in it with a pin first so that it can absorb.

katalina,

I sent you a private message several days ago!!  Please check.  

Thanks,

Wendy 

Shannagirl: Yes I am going through the same thing.  Instant menapause has really rocked my sex life (It used to be amazing).  Sex was painful and desire was gone. Plus I was getting UTI's after sex.  My Gyn told me I needed to use an estriol cream.  As he so nicely put it "You have vaginal atrophy, so although when I look at you i see a 43 year old woman...your insides are one of a 65 year old". My eyes welled up with tears right there and then.  So I filled the prescribtion but never used it.  My Oncologist and primary's reaction was that I should absolutely not use the cream (I am very ER/PR +)...so back to square one.  I found a sexual health doctors for cancer patients in NYC and took a long train ride down.  It was great.  She told me that yes, I was going to have to find a new baseline normal but when I did it would be a good one.  She said that it might never be what it was but would be good and satisfying.  She said that most womens body's get to this point but it happens so gradually they dont realize it as much. The positive thing was that since we cx patients get here so instantly we notice how great the change is and take steps to correct it.  So she gave me a whole program on how to stop vaginal atrophy from getting worse and improve it, and how to make sex enjoyable.  I did get a no to testosterone and progesterone creams.  She said that testosterone can convert to estrogen and cause liver problems and there was no magic cream...just hard work.  she covered self image, excercises to do with your partner (senual but not sex) to find new area's of sensation, sleep, diet, exercise and nutrition.  She thought the fact that I took a prophylactic dose of macrobid after sex was a good idea for preventing UTI's. And yes she addressed the atrophy.  She suggested daily vaginal moisturizer (replens, vit E or KY Liquidbeads) for moisture purposes only, Water based lubricants for sex, and using a vaginal dialator or smooth plastic vibrator at least every other day.  One of the most important things she emphesized was Kegels.  Regular ones for overall pelvic health and special ones geared specifically towards sexual health.  Apparently doing kegals to exhastion of the muscle BEFORE sex relaxes the muscles and opens the vagina to help stop pain. There were also specific kegals to do with the vibrator/dialator that help you relax and then insert it further (to stretch the tissue, restore elasticity, and bring blood supply).  I hope this information is not too graphic or too long.  It has really been helping.  The most incouraging thing was that she was very optomistic that I could achieve everything without estrogen creams and said that for those who really put the effort into thier sexual health they actually can have better sex lives than the general population and that when pain starts getting replaced with pleasure you get some libido back. Also, I found a website called "A Womans Touch".  It has a 'vaginal renewal' program similar and lots of information for sexual health for women that have been effected by cancer/early menapause.  Thank you to all you ladies who have posted.  I was so happy to find this thread and love reading everyones suggestion.

Sometimes, I feel so alone but then come to this board and find friends, support and, thankfully, people who understand what I am going through!  I had a right mastectomy and have been dealing with my issues on how I look.  I feel like a freak and have a hard time allowing anyone, much less my DH, to see me.  No matter how many times he says I am still beautiful, I do not feel beautiful.  And then there is the DO NOT TOUCH ME NEAR MY BREAST!!! thing.  Now, I have had my first round of chemo and all of my smooth tissue is dry.  My lips, the inside of my mouth and certainly the inside of my V-J.  It truly does feel like I have a yeast infection, but not quite as itchy.  Now I find out if I don't use it I will lose it?!?!  To top it all off my hair on top and down there is falling out in patches.  Really, how many more indignities must we suffer?  I am going to have to check in to the remedies you all have given above.  I didn't know there were even options available.  Thank you all!

My oncologist says absolutely NO to anything with hormones too but he's a guy who also doesn't believe in any natural remedies, or integrative medicine. My gyn is watching my estrogen levels, and mine went down after using Vagifem. Knowing that the Vagifem dosage is even lower now is just that much better.

However my insurance company doesn't agree. They charged me $198 for a three-month supply. If I'd been willing to go back on the Vivelle-Dot, which is systemic estrogen, it would have been $10/month. Guess they'd prefer that I risk my life to have a healthy sex life again. My doctor tried to get the insurance company to override their decision but they wouldn't. Talk about short-sighted!

My onc gave me the okay for the e-string...can't remember if he wrote the Rx or my gyn....it helps some with lubrication,but we still need to use topical lubricants and it is still painful....the e-string has not helped with mojo......I rarely have the desire and when we do try to make love, it takes forever to get stimulated....my poor husband...it is sooo hard on him....this is one side effect that has continued after stopped the AI's.  Mid 50's is way tooo young to give up sex...hubby and I were talking the other day about what is available to help with mojo....

I've been having a lot of trouble with this.  I really miss the days when it was easy.  Unless my partner is very careful, I tear and I bleed - had to wash the sheets once it was so bad.  I can't get my oncologist to prescribe anything with estrogen in it as my tumor was estrogen receptor positive (100%), so I think the only options open to me is dilation and lubricants.  I got a set of vaginal dilators and they do work well but if I don't use them right beforehand, the tissues contract right back up again.  I liked the coconut oil idea, I've been using it anyway for a body oil, and it's inexpensive.  It's not only the vaginal tissues themselves that tear, it seems like all the folds in the inner labia have gotten very fragile and I get fissures that really burn - once I actually tore myself just using toilet paper a little too hard.  I have to tell any gyn doctor who examines me to be very gentle as the speculum can tear me.  I would love to be able to use just a little estrogen, and several of you have mentioned products that aren't easily absorbable into the bloodstream, so I think I'm going to write down the names and try to convince her to let me try them.  Thanks so much to all of you for all the good ideas.