Medical Question (vaginal Stenosis) After Radiation

[Craftylady]

I haven't found a site or forum yet where I can get detailed, good info, but I'm hoping someone here is aware of one.

Backstory: I finished chemo and radiation 2 months ago tomorrow (anal cancer). One of the side effects is severe radiation burns to the entire genital area. I had them badly and I'm still recovering/healing.

I'm getting the beginnings of vaginal stenosis, and although I bought a set of dilators, I really don't know how I'm supposed to use them. The sites that sell them talk about other problems, but not radiation-induced stenosis.

My problem right now is, sex is impossible. We've tried a couple times, and no go. I think I'm supposed to use these dilators several times a day to stretch the vaginal canal again, and it's getting more painful each time I try, so I know I'm not doing something right. Now I'm worried that the scarring is going to get ahead of me if I don't do something right away.

Any advice?

[Tyger]

You are a brave & strong woman, and I hope that things continue to be nothing but positive for you!!

Unfortunately, this is NOT a site that gives MEDICAL advise. Since this is a severe physical condition, I would suggest strongly that you speak with your OB/GYN and your proctologist/oncologist to find out what can be done in your certain situation.

After everything you have been thru, and I'm sure every sort of invasion possible, you should know that your doctors have heard/seen it all, and will know the very best way for you to become more intimate with your husband again. Trust me, they know that a BIG key for their patients to get well is a support system in place for the patient, including your husband (actually, he'd be #1), and so they will be happy to help you learn how to reconnect with him physically.

Best wishes to you! Please let us know what you were told. I would love to hear about it.

[Craftylady]

Thank you :-) But I've asked - both the OB/GYN (female) and my radiation oncologist (male).

They told me to get the dilators, and where, but nothing on using them, except when to start and how important it was. I could make appointments, and pay to go back and ask some more questions, but I don't really think that's what I want right now.

What I really need is some feminine advice from someone who has "BTDT", you know? I was hoping someone here might know of a good support forum - because I haven't found one yet.

[leslieanne]

Craftylady - first of all I admire you for what you have gone through and what you are continuing to experience. It is wonderful that you are being proactive about your ongoing quality of life!! It's so easy to "throw in the towel".

I also have to say that since I've never seen you, never examined you it is difficult for me to give specific advice. The information I'm providing is general in nature. If you continue to have pain or difficulty using the dilators you need to see your OBGyn doc again - and take the dilators with you.

If one tries to progress through the dilator sizes to quickly pain and potential injury can occur. Compare it to having your leg in a cast - once the cast comes off you don't immediately start doing tons of exercises or start running. You have to slowly work your way up - it's the same with the dilators.

So this is the recommendations I've given the few patients I've cared for who have needed to use vaginal dilators

1. Always, always, always use lube with them

2. Use them daily, twice a day if you can tolerate it, but it's ok to start out just once a day

3. Start with the largest dilator that DOES NOT CAUSE YOU ANY PAIN, become comfortable sliding the dilator in and out of your vagina. Do not use any force to push it in. You can do this while lying down, sitting on the toilet, or squatting - which ever is most comfortable for you. If you do it while lying down you can slide the dilator in and leave in in place for 5-10 minutes.

4. After 5-7 days move to the next size dilator - again be very gentle. You do not need to push the dilator all the way in. Continue using the same size dilator until it is no longer painful - this could be a few days to a few weeks.

5. When moving to a larger dilator you may not be able to advance the dilator to it's fullest point - thats ok, go at it slowly. Also you may be able to only tolerate it going in and out, you may not be able to tolerate leaving in place initially.

For patients who are using dilators after receiving pelvic, vaginal or anal radiation versus those with a vagina that is very narrow due to their genetic makeup - the dilation process is typically slower due to the loss of elasticity in the skin/tissue.

Remember - slow and steady - while it will most likely take time (months most likely) if you don't do it your vagina could become as narrow as your index finger.

You have much to be proud of, don't get discouraged - you're through the worst of it. And please if you continue to have pain when using the dilators - go see your doctor.

[mystofpric]

Crafty~

I have no specific advice for you but I do want to wish you the best! You've been through some of the toughest medical procedures out there and you are coming out a stronger and braver woman. Again, I'm not in any way about to give you advice but support I can give in abundance!

Suzy

[Craftylady]

Leslieanne, that is GREAT! I really do appreciate the detailed answer. It's exactly what I needed. The how-tos.

What nobody has told me even up til now is how critical it is to begin using the dilators, and use them conscientiously. I really thought it was something I could sort of do ""hit or miss. Now I'm beginning to realize I might have completely lost my ability to have intercourse had I not started when I did, and even more convinced now that I've read your reply.

Yes, it would be easy to throw in the towel. I've been through a lot of pain in that area (which continues to some extent - just part of the healing of radiation damage) and it's a bit tough when you are finally having some degree of comfort to willingly put yourself back into some discomfort again. But again, when I consider the cost, it's worth it.

I'm glad you explained that it needn't be a painful process, and I also appreciate from your post that I must be patient and diligent with the exercises and not expect overnight miracles.

I'm only 53 and my husband and I enjoyed a reasonably good sex life before the cancer. Add to that the fact that I'm having the testosterone pellets again, and my libido is fully engaged....well, the spirit is willing but the body just ain't quite caught back up yet

And SuzyP, thank you What a kind and sweet post.

[Craftylady]

Oh and I wanted to add, I am using the lube I got from here, called Liquid Silk and it's the nicest lube I've ever used yet.

Reminds me, I'd best order more soon!

[mystofpric]

Anytime darling, that's what the site is for!

[Craftylady]

I added an update in another post, but I wanted to also update here.

I'm doing much better, and healing pretty well. I can tell that the stenosis is a battle I will fight for a long time to come. But the cure is getting much easier. We've successfully had full intercourse several times now, and it gets a bit easier each time with plenty of lubrication.

We've learned to be very playful, open and communicative about pleasuring each other, which after 20 years of marriage is a wonder. We're going away in 2 weeks for a second honeymoon (our 21st anniversary) and I predict it's going to be the hottest time ever!