Pain during intercourse - TMI

Hi Jancie.  I'm having the same problem.  I finished chemo in March and it's still very painful for me.  We use a TON of KY Jelly and that helps some.  I talked to my gyno's nurse about this recently and she recommended using vegetable oil.  She said she know's it sounds strange, but it really works and will not dry up like the KY.  I haven't tried it yet but plan to.  I am 45 and was also thrown into menopause by chemo.  One of the possible symptoms of the menopause is the shrinking of the vagina wall making it much more tighter than before.  I think that is my problem and what is causing the pain.  I will try the oil (hopefully soon, for the sake of my dear BF) and will let you know how that works.

Jancie, the position of your cervix is not the culprit.  It's the chemo suppression of your ovaries, or as it's called chemopause, which has taken away your estrogen, testosterone, and probably progesterone, all the hormones needed for vaginal lubrication and for keeping the tissue healthy and plumped up.  Without the estrogen, tissue drys out and shrinks, and you are more susceptible to UTIs and that burning feeling.  And without the testosterone, sensations and desire are diminished.  Some women have to get vaginal estrogen creams to take care of this problem, although some Oncs are reluctant to allow it.  

I agree that you should check out the Mojo thread.

jancie, I'm placing my bets on 1) dryness and 2) shrinkage.  I was 5 years into menopause when my BC dx hit, so dryness etc. was nothing new.  But a dab of KY almost always took care of it.  BTW, I have never been pregnant, so my stuff was in original condition, too.

Now, after a year of Arimidex, it's like the Sahara desert in there.  No more little smear of KY--now, I use one of those applicator things that come with some of the "personal lubricant" products, and I fill it with KY; plus we add a bit more around the outside.  The more KY I manage to use, the easier things go.

Even so, there are some painful evenings.  My theory for why it is painful is based on what happens to the epithelial tissue in there when we stop producing (or taking) estrogen.  Pre-meno, that epithelium is very, very thick (plump, someone called it) and filled with glands that release lots of juicy stuff.  Now, the epithelium is very thin--I suppose it sits right on top of the basement membrane and underlying connective tissue, muscle, etc.  So, that underlying tissue gets tugged a lot more now, and there is hardly anything between the frictional apparatus and the underlying tissue.  (Think about the difference between packing something in a layer of tissue paper versus several layers of bubble wrap...)

I'm speculating here, not having reviewed my histology notes lately:  epithelium normally does not contain nerve endings.  The nerve endings are in the tissue underneath the epithelium (the dermis, if we're talking about skin, for instance).  When the epithelium is really thin, there's ot much cusion over those nerve endings, and they get triggered a lot.

Those are my thoughts on the subject.  It is an awful problem, though; and I am very sympathetic. 

otter 

Hi All,

I, too have this same problem with pain and extrememly tightened VJ. I was 48 at time of dx. Have never had kids and always enjoyed sex. Now I cannot enjoy sex, it is always painful, and I have no desire for it. I have tried and nothing seems to work for me. It has sent me into a deep depression and makes me very angry about this entire process. 

When I was first dxed and did all of the research, I became very depressed over the idea that I would lose the sensation in one of my girls and then not be able to get any  MOJO from anywhere else. Well, my worst fears came true. 

IF someone has a doc that has heard of a good solution besides lubrication, please let us know. Lubrication does not help me either.

Connie

It really stinks that the only thing they can come up with for keeping breast cancer away is taking away our hormones!  We really need better meds.  I'm on tamoxifen but feel very badly for those of you who had to go through chemo and then go on an AI.

Janice,

I was 40 when diagnosed (I am now 43) and I completely understand what you are talking about. Post treatment I opted for a hysterectomy so I am now on an AI.  I tried KY and it burned and hurt.  Same with me-a few drops of blood after and even the next day. Lots of pain.  And I have had 2 children biologically!  I have also always been very small and tight.  Dr. uses smallest size speculum on me.  I talked to my gyn and she said it is vaginal atrophy.  Sort of like use it or lose it.  I was disheartened.  She suggested Replense and it definitely has worked.  You have to use it once every 3 days or so but it does not burn like the KY did for me.  Also, I need lots of foreplay and wine definitely helps.  I am glad you posted because I may head over to the MOJO thread for some other ideas.

Suz very well said!........Unfortunately the adult store near me was shut down by the way too conservative people in my town......I liked that place!.......It was the only place I could get quality lube that didn't make me burn or itch.......

gyno told me last month that chemo and tomoxifen make it lose it's ability to accomadate. He recommended replens or something like that. There is also another prosuct out there (me again) or something like that that does the same thing..He told me f it got to be  a quality of life issue at some point we would discuss the estrogen ring. says there is not enough estrogen to pose a problem to ER+ women....For now the replens is working for me.

I've been using the Replense but it doesn't help completely with the type of pain that's being described. When I went to my gyn., he noticed that the tissue was actually torn and very bruised. This is with using Replense daily!!!!

I'm going back for my pap in a couple of weeks, and plan to ask for a prescription to Vagifem or some other topical estrogen. From what I've read, I'll only have to use it for the short term and it doesnt' get absorbed into the system. Plus I'm using Femara which should obliterate anything that makes it into my system anyway.

Hi chicas...This question, as well as many helpful suggestions, have been the primary topic for discussion on the "MOJO" board. Replens and KY Liquibeads have been used successfully by many women, while others have found relief through using the Estring or Vagifem. Many have discovered that they needed more than standard lubes and have used KY jelly, Vaseline, baby oil, and even Crisco with success. We have also discussed toys, including dildos and dilators. Here are two suggestions:

http://www.mypleasure.com/Sex-Toy-Berman-Dilator-Set.asp?dept_id=9090?cat=SearchCat

http://www.vaginismus.com/products/vaginismus_kit_dvd

This article discusses how to use a dilator:

http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1118152872630.html

Finally, we talk a great deal about alternatives to vaginal intercourse, but since the original question here addresses only that, anyone interested in other types of sexual activity should visit us over on MOJO!

Good luck, ladies!

~Marin

Marin brought up the point that helped me. I don't (usually) have a lubrication problem but intercourse can be really painful. And it's gotten worse over time. The loss of estrogen (menopause, tamoxifen, AIs) cause atrophy of the skin of the vagina - it gets thin and fragile and doesn't stretch like it used to. I have found that if we have intercourse more frequently then it hurts less. Not that I have much in the way of interest in having intercourse all that often since my libido is low! So I'd go with Marin's links and get the dilators (those Berman girls have their names on everything now!) and something a little sexier too!

Hi Jancie-

Don't know if you remember me, but we have "met" on another thread! I just want to THANK YOU (yes, I am shouting!) for starting this thread. I know about the MOJO thread and learned about Crisco (some merit, especially for him!) from there. It's just so dang long and since we are pretty close in treatments (though I started Aromosin in July), this thread is exactly where I'm am at this moment!

I spoke to my Onc. about this just before starting the AL and he said if things got that bad, he would consider the estrogen cream. I haven't seen him since but whatever I had before the Aromosin is beyond kaput...and the pain is just so upsetting! Saw the breast surgeon (female) who said this is a definite quality of life issue that must be addressed. No doubt about that in my mind. We've dealt with so much already that losing this part of ourselves is just asking too much. Seriously, THAT aspect of our womenhood is too important to have to keep now.

So, I am going to check out the dialators and other sites Marin so kindly left, make an appt with the Onc. for the estro cream (again...quality of life issue. worth the small risk to me), and get myself in rompin' shape!

Bless you all ladies.

Ellen

Cindy, hon, please don't go live on the streets! I thoroughly understand wanting to escape from the never-ending "gifts" that BC bestows upon us! But while you seek solutions (and I firmly believe that there ARE solutions!), please try to find a safer and more reversible escape (some chick lit, perhaps?).

As for the Crisco, the solid is what was recommended over on "Mojo" but so were other alternatives, such as Vaseline ointment and baby oil (esp. Burt's Bees apricot oil). Some have worked for some of us, while others found different aids. Overall, though, I'd say that something that will adhere to the vaginal walls and not just drip or glop out is better than liquids and oils (or most lubes). Has everyone already gone the route of the original KY jelly? That stuff has a bit more density and stickiness at least. And then there is the issue of how accomodating your atrophied vagina is...at first. You shouldn't expect to have a marathon you-know-what fest ( ) straight off the bat but, rather, to need to gradually introduce "foreign bodies" in there. By this I mean to suggest that you use a dilator or, if that totally freaks you out, fingers only (yours or his....or, hmmmmm, both? ). Whatever you do, patience-but-determination is the absolute KEY. You're not closed up and you're not dead, so I say work for it, but slowly. When you have a patient husband or partner, it can be easier, so at least you have that going for you. Still, keep in mind that this is as much about your pleasure and healthy feelings as it is about his. You DESERVE sexual pleasure, so go for it, chica!

~Marin