internal rads...

hello ladies,

i have begun my internal radiation and am now having to dilate myself. does anyone else find this physically painful? i just started this week and it is like sore right now. i use lubricant. has anyone experienced this and it got better? i feel sorry for my husband because we attempted tonight and it was very painful. i can't imagine that at 28 this is what it is going to be like for the rest of my life. any advice or stories of experience would greatly be appreciated!

cheers,
fulky

Hi Fulky,

Yes, the vaginal tissues are very tender at first. Have you been instructed (like I was) to not begin dilation or intercourse until 2 weeks post treatment? I'm 2 years out almost, and I still use lots of the thick lubricant (generic KY-type) when I dilate twice per week for 15 minutes each.

It will get better, lots better, as the tissues heal and you are able to stretch them regularly.

Good luck.

Hey Fulky, welcome to the wonderful world of dialators! lol I didn't start using them until almost 2 months after treatments ended. If you're still receiving internals, I'm sure the tissues are extremely sensitive.

Did they give you different sizes to use? If not, call your doc and ask for a smaller one to start with. My doc gave me a number to order them from. (a medical supply place in NY) I received a set of 4 in varying sizes for about $60. I can't imagine having to start with the largest one! The smallest one was close to the size of a tampon or finger.

Also, I was told to use it daily for 10 minutes. My doc said if I aimed for that and fell short, not a problem. But if she says 3-4 times a week and I fell short, it could be a problem later on.

Again, if it's painful, ask your doc if you can wait until after the internals have ended. Or request a smaller size to start with.

Hi Fulky,

I haven't yet had the experience with the dilator - my internals are still coming up and the dilator experience is really not something I am looking forward to - at all.

I did want to let you know that sex is no fun at the moment. It really, really hurts and no matter how "easy" we take it, it still hurts. I don't know if this is from the most recent surgery I had or whether it is from the external radiation. I too like you, am hoping that it definitely get's better over time.

I hope that one or some of the suggestions mentioned above will give you some relief.

s
Jan

The purpose of the dialator is to keep the vaginal cuff from closing - in the long term. It would seem then that the frequency of using the dialator is more effective than the duration of using it (in one sitting, so to speak). Both my rad/onc and gyn/onc recommended 3 times a week for the count of 20. Did that for 1 1/2 years and now doing 2X week which has proved effective for all my check-ups so far. I think if I were told that I'd have to keep the dialator in for 10-15 mins. at a time I'd be less likely to use it. anna

thanks for your responses ladies...here is to hoping it gets better with each one!

i wish all of you the best as well.

s

fulky

Do everything that you can to avoid problems down the road, Fulky. The old adage is true: Use it or lose it. I am surprised, though, that you are dilating now while you're still in the midst of treatment... Talk to your doctor. Mine specifically told me to wait at least a month after treatment.

He also said that sex was the best thing. If you're having sex regularly, you don't have to worry about using that dilator.

BTW, I am one of those ladies who was not 'religious' about using the dilator (or sex) and believe I am paying the price today. This has been one of the hardest things for me to deal with and, of course, I don't want to find that I've totally closed up, but things have definitely shrunk down there!

Good luck, hon.

I'm so glad you are asking this question. I had 5 internals that ended on 1/15. I had cancer in my lower vagina and vulva area. I'm supposed to use the dilator every day and I'm using the absolute smallest one, and I'm having terrific pain with it. It still hurts for me to urinate and after using the dilator it hurts even more to the point that I have to grip something tight and grit my teeth when I pee. The doctors say my tissues have not yet healed from the internal and intense external radiations I've received.

I am not doing so well at using the dilator daily and have only used it a couple of times a week because I pay for it dearly for several days afterwards. I'm worried about closing up too, but don't know what to do.

Since my husband just had prostate cancer surgery and is recovering (we are now quite a pair), sex isn't even in the equation, thank goodness as I don't know how I'd be able to swing that.

I hope you don't mind if I ask on your thread, but I'm looking for feedback on this too. It seems to be the only thing besides some fatigue that continues to plague me at this point.

Hey vln, I've noticed that if I let a couple days go by between using the dialator it's a bit painful for the next few days. Actually after that first experience with missing, I only skip when I have an internal exam. The only suggestion I can think of is to make sure you're using enough lubricant. Hang in there hon.

I am so sorry you are having such pain.

My rad onc told me to have sex 'every week or so' beginning 2 weeks after the end of treatment. I did that, and have been very lucky, no problems at all, other than a bit of spotting sometimes after. I used the dilator if hubby was gone for an extended period but I was never very religious about it. My gyn/onc said that after a year or so I didn't have to worry about having sex even every week. We were on a wonderful Caribbean cruise for the last couple of weeks and had a lot of 'fun', hehe, with no problems. I wish you all the same. I hope it gets easier and without pain.