Jolene wrote:
I cannot believe how the medical professions can leave out such an important psychological impact !!! No kids, fine ! But painful sex here and onward, what the hell ?!? Apparently it could even cause problems with future vaginal examinations for other sort of cancers. How can such an important information be left out ?!
weisssoccermom wrote:Good morning,
12+ years ago when I started my radiation for rectal cancer, the first rad onc I met with (he was a jerk) casually informed both of us about it. He didn't talk about it in a caring manner but rather winked at my husband and told us to have sex during treatment (or use a dilator) so that the vaginal stenosis wouldn't happen. His whole demeanor was NASTY! I switched to another rad onc who didn't mention it at all until I did (this was after about the 2nd or 3rd treatment). When I brought it up, he did acknowledge that this was a problem but flat out told me (and back then when I mentioned it on this board I heard the same reaction from so many female members) the docs don't want to tell you about this because well, you might not go forward with the treatments! Seriously? I could not believe how arrogant these doctors were. Did they truly believe that had we (females) known about the dryness, painful burning, vaginal stenosis, etc. that we wouldn't have done the treatments? That's another story.
I know right ! Why would any sane woman not want to go through the radiotherapy treatment just because her vagina will get affected !!!? There is a huge difference between simply wanting to understand what is happening to the vagina vs resisting treatment !
Initially, I had found myself on an anal/rectal cancer group.....not knowing the difference (anal/rectal squamous cell carcinoma which is NOT the same...treated differently). However, that group taught me SO much. Those patients also undergo pelvic radiation and they all seemed to be aware of the painful vaginal symptoms that can and do occur. From them, I became aware that female patients were told to either have sex during treatment or to use a dilator to help keep the vaginal canal open and to stop the scar tissue from forming. There were even patients on there who used other things instead of a dilator which I personally wouldn't recommend. I learned from them to get Premarin cream from a doctor (Rx) to help with the dryness caused by menopause AND the dryness and thinning of the tissue caused by the radiation.
I'm going to get myself into a support group soon !! Hopefully I can be more aware of the situation !
That's a background....now here's to your questions. The scar tissue buildup in the vagina....the narrowing of it.....and the accompanying dryness and thinness of the tissue has already happened. You really can't STOP it but you could have controlled it had the doctors been more forthcoming with you during your treatment. The thinness and loss of flexibility that is caused by the lack of hormones (menopause) and from the radiation (which by itself causes the skin to dry and thin) can be managed with something like Premarin. The narrowing which is caused by scar tissue buildup from the treatments, has already occurred and now you must go through the process to 'stretch' that tissue out. Problem is, if you think about scar tissue, it doesn't 'stretch' easily. I have personally not gone the dilator route as we had sex during my treatment to avoid this problem, but I have heard that it is a rather long process.
We are both not in the mood for sex at this stage of my waiting / treatment hence I'm so anxious about getting a dilator ! Unfortunately, not everyone's sexual appetite is as good as you both ! How do you do it ?
You may be one of the lucky ones who has little to no damage....there's no knowing. Remember this though. Just like we want the radiation to continue doing its job to shrink the tumor (they say it continues for a good 6 weeks after we stop treatment), that same radiation likely continues to do more damage on the vaginal tissue. I just got news from my colorectal surgeon that the radiation continues to work in the body for up to 6 months !
I have a question....did you go through menopause because of the treatments? You said that the doctor told you you could get pregnant after radiation but did he/she tell you that in all probability you would go through menopause from the treatments? I was one of the weird ones that did NOT enter menopause due to radiation.....instead my periods got WORSE (they were bad enough before....worse was HORRIBLE). When I started my treatment at age 49, the idea of entering menopause was ok with me. I had had my kiddos and certainly didn't want anymore. However, I've learned on this board that many younger women were at least told about freezing their eggs before their treatments began. Did your rad onc give you this option??
Yes - the rad onc did mention the option of eggs freezing. We choosed not to go ahead with it as we have never been keen on kids so it made the choice of going for radiotherapy a lot easier, psychologically it sucks having that option taken away from me "by force". I have however come to terms with it and have accepted the situation as it is. I was however not made aware of vaginal stenosis and that's what gets to me.
In short, and I'm just being honest, whatever damage to your GYN tract has already happened and there's not much you can do about it at this stage except to be prepared for whatever has happened. It ANGERS me that rad oncs generally don't talk about these symptoms....some don't even bother to tell females that they may go through menopause. Just for the heck of it, I googled the term 'vaginal stenosis' and every definition included the terms radiotherapy or radiation therapy as causes for why it happens. Below is the definition from cancer.org (National Cancer Institute). These rad oncs need to wake up and be honest with females. They also need to give females education about potential things that females can do to minimize and/or avoid the damage caused by radiation. Best of luck to you.
It's scary that some do not tell females that they may go through menopause !!!?!? How do they even get away with it !
From experiences with my male rad oncologist and from what we have been reading on the boards, it seems like the vagina is something to be taken lightly (however unconscious) ! To put it bluntly, it is as though an undercurrent of sexism is at play ! The vagina is as precious to us females as it is a penis to a man ! Sure, staying alive and killing the tumour is important, but so is understanding what radiation is doing to the vagina and how we can take precautions ! My identity as a woman depends on it too ! I totally feel your angst !
MissMolly wrote:Check out these medical grade silicone vaginal dilators, which come in a set of graduated sizes.
http://www.vaginismus.com
Notice that the silicone dilators come in 5 different sized sets, from a beginning size # 1trainer set (dilator is the diameter of a pencil and narrower than a light flow tampon) to a # 5 advanced set (approximates diameter of carrot).
Medical grade silicone provides for a gentle material.
Karen
Maggie Nell wrote:Jolene wrote:
I cannot believe how the medical professions can leave out such an important psychological impact !!! No kids, fine ! But painful sex here and onward, what the hell ?!? Apparently it could even cause problems with future vaginal examinations for other sort of cancers. How can such an important information be left out ?!
It would be interesting to compare how men are counselled by the doctors regarding radiation etc impacting on their comfort levels and functionality
to what women are told, according to region, country and culture.
The information is left out because it's not important to them. Not their vadge.
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