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Vaginal Dialator

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

No one in the radiologists office has mentioned using one of these so I am going to broach the subject tomorrow. 

I know many of you have used them, is it something you have purchased/educated yourselves with  or more a part of your medical treatment plan and provided/educated as such? 

Thanks in advance

eihtak
Posts: 849
Joined: Oct 2011

No one on my medical team had mentioned the use of dilators to me, but fortunately I had heard of women using them on first another site (mainly used by women after pelvic radiation for cervical cancer), and then on this site also. I ordered mine from "vaginismus". The set came with 5 sizes and info on use. I didn't start using them until at least 6 months post treatment. When I asked my rad nurse about them, she (sort of) apologized for not mentioning the benefit of using and thanked me for being proactive???? It seems to be a topic sadly over looked by many of our doctors (teams), yet when we bring it to their attention they agree on use, so don't quite understand. My regular gyn died unexpectedly during my treatment and when I went for my first pap post treatment (almost 1yr post), my new gyn did suggest using them. (By then I had already ordered them). Everyone has varying degrees of radiation damage and stenosis. I started with the smallest size with lots of water based lube almost daily for about 10-15 min. a day in the shower, after a month or so I moved up a size, and continued to do so. Sometimes I now skip a day here and there but usually try not to miss more than a couple in a row. I am almost 2yrs post treatment and kind of stuck on the second from largest size. I'm sure more will chime in on where or how they were educated on this topic. Keep us posted on what you learn from your doctors please.

All in my thoughts and prayers.....

 

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

My rad onc gave me my first dilator on the last day of treatment and instructed me to use it as soon as I felt it would not be painful, which was about 2 weeks later.  It was a rather small one and I knew it would need to be replaced with a larger one, so I ordered a set of 4 graduated sizes from Vaginismus online.  I am almost 4 1/2 years post-treatment and still use my dilator regularly in the shower.  I think a lot of doctors fall short when it comes to telling patients about the importance of dilation after pelvic radiation.  Had my rad onc not brought it up, I would have had no clue in the beginning.  I've learned a lot about the importance of it on support sites such as this one.  Even if someone is not sexually active, it's very important to keep the vaginal canal open for future pelvic exams and paps, especially after having had an HPV-related disease such as anal cancer.  I'm glad you are going to ask your doctor about this.

jcruz
Posts: 231
Joined: Jan 2013

The first time I met with my rad onc she talked about vaginal stenosis and told me I'd need to use dilators after treatment ended.  About 10 days after my last treatment I called her a little freaked out because my labia had started to stick together and she said to come in and pick up the dilators.  I started with a small and now use a medium every other day.  The last time I saw her she asked if I wanted to also have a large but I passed.  I am not sexually active and don't anticipate that changing so my goal is to be able to have pelvic exams and pap smears with a minimal amount of discomfort.  Starting with the small size soon after treatment ended was pretty easy for me and I've gotten over the weirdness of using these things.  I can even make my girlfriends laugh when I talk about my little plastic friends.

sephie's picture
sephie
Posts: 526
Joined: Apr 2009

This really irritates me that physicians are so lacking in knowledge....   i started about 2 months after tx was finished but should have started earlier.... MD Anderson started placing the dialtor in the vagina during radiation ( about 1 month after i was released)....MDA is great about trying to learn and improve......they did tell me at the very beginning that the vagina would close up and that i would need the dilators.... i started extremely small and have worked my way up.... MDA gave me  4 sizes to use.....i still have to use them at 3.5 years because when i stop for a few days , i can tell that the entrance is tighter..... please get some.......   sephie

eihtak
Posts: 849
Joined: Oct 2011

I found it interesting when talking to my new Gyn, that he admitted he works more with women having radiation for CC, and that they also place a dilator in during radiation, but to his knowledge that was not the practice during radiation for anal cancer. I wonder if that has also changed here???? I will ask at my next follow-up, I'm just curious.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I initially refused to have VD during radiation but was talked into it by MDAnderson radiation oncologist. He said it helped in preventing urethritis and unnecessary radiation during daily treaments. I am at wk 5 today and am having a lot of trouble inserting a small for treatment. I have not been given any other sizes. It is institutional policy at MDAnderson to use VD during radiation........I hate it but if there is a danger of vaginal stenosis so that it becomes closed......not a good picture to anticipate happening; I cannot use anything but what MDAnderson used for the radiation simulation - something to do with positioning. They are applying lidocaine 2% to the surface now and I take Tyl with cod before going - it is that unpleasant/ painful/ throbbing....but just another side effect. I'll certainly look into that website with different sizes.....thanks

sandysp's picture
sandysp
Posts: 803
Joined: May 2011

My Radiologist gave me a set of dilators and introduced me to my nurse for questions about them, who seemed to run out of the room quickly. I didn't remember her name and only saw her dart by one other time during all the days of my treatment. I can remember using it and feeling like everything was stuck together. I was convinced if I had not used them I would have stayed that way. I was T2N1, having lymph node involvement. It was through this site I realized how important they are and about Pelvic Physical Therapy.

I used them regularly but still was dissapointed to find I could not have intercourse four months after treatment. It is now 18 months after treatment and still, though using them regularly and being treated by a Pelvic PT still cannot have intercourse. I realize now it is not only stenosis but also Genital Lymphoedema that is contributing to the problem. I am still putting it all together. At Memorial Sloan Kettering Rehabilitation, I have been advised to use bicycle shorts and compression stockings. This relieved much of the pain in my legs I had been suffering with for years. I was able to cut way back on Lyrica and almost never even have to take an Aleve now. I am doing Zumba classes almost every day. Soon I will be fitted for better compression garments, once the lymphoedema assessment is complete.

The remarkable thing to me though is how much better I feel now than before my diagnosis. I am also slowly accepting that my lymphoedema condition is chronic. But I am 63 and have had a remarkable intimate relationship with my husband over the years.

I also have a Women's Health Psychologist at MSK. She is helping me a lot. I see her every two months. Last time I was there she gave me two extra full sets of dilators. So far MSK has handed to me three sets of dilators. My PT says the best ones are actually the battery operated ones you can get in sex stores, though, believe it or not! Blood circulation is a great healer so getting blood to the area is a really good idea.

I have not gotten into the habit of using it yet since doing so created some pain related to the new flow of blood to the area in the form of muscle spasms in my rear end the following day but I guess it is time to try again. I have been a bit down over my birthday and valentines day coming to terms with the nature of these difficulties.

My body, even at my age, is a mystery to me. I enjoy learning more about myself, though and am grateful, in a way, to have had to be forced to learn all these things.

All the best to you,

Sandy

 

sephie's picture
sephie
Posts: 526
Joined: Apr 2009

sandy,  thankyou for being so frank ... I still struggle with intercourse due to pain and i feel sooooooooo guilty ..( my poor hubby)..... even the docs at MDA have been disappointed in my progress in that area.... the female nurse totally understands my fear....unlike your nurse , she never ran away and was soooo kind and helpful....have not tried a battery operated one....... thx  again.....this shows  how good this site is for us......  sephie

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Well talked to him yesterday about the weekly rectal exams, they aren't going to happen yea! 

He said they use dilators for people receiving radiation to their cervix and "we are radiating a different area on you".  Really?  It's not like I asked him to keep my feet the same size while radiating my head!  He said he knows that it is becoming more common to use the dilators while radiating the pelvic region in general so we will re-visit at the end of treatment. 

I am going to follow you folks' suggestions, order my own, and try to be proactive in my health care.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Wow Sandy!  I could have written a great deal of your post right down to our ages.  My husband and I have talked at great length about the subject and agreed, like you and yours, that our relationship is "mature" enough and our history strong enough that we are ok.  LOTS of hugs and cuddling though.  

Sephie, the doctors at MDA seem to be disappointed in the lack of progress in that department with he exception of my GYN who seems to understand.  Like you said, the nurses and PA at MDA are really good at listening and trying to find a solution.  The rad doctor tried to use a dialator during radiation but my tumor was so large it pushed into my vagina and the dialator displaced the tumor making it difficult to radiate the same areas precisely.  Anyway, here we are!  ALIVE!!!!!

sandysp's picture
sandysp
Posts: 803
Joined: May 2011

You shared about this quite some time ago, long before I was willing to consider this might be the way it is for me. It was really helpful and I thought about you when I posted this. My husband keeps wanting me to "get it fixed" though. He hasn't accepted it and when I brought it up a couple of days ago he thought it was me just being negative. I sent him some information on the subject and he read it. I am still going for treatment, it's just that I feel more acceptance now, that those days when I could have pain free sex are likely just precious memories. It just seems that this is the way it is going.

Thank you for your sharing here. It is really helping me.

Fondly

Sandy

sephie's picture
sephie
Posts: 526
Joined: Apr 2009

hey, sandy,  if he will read them ,,, let your hubby see what i have said so that he will know that it is affecting many of us......   hugs     sephie

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Ditto!  He can read mine...

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