Sensitive subject

RGW

I will be finishing up radiation next week and have done my research about how to prevent vaginal narrowing. I had planned on having regular intercourse with my partner, but unexpectedly last weekend he broke up with me. Now I have to contemplate the vaginal dilator route. My questions: does the rad/onc office provide the dilators or do I have to buy them myself? If I have to buy them, any suggestions on where to get them and good brands? Does insurance cover them? Any help answering these questions or other thoughts on the subject would be greatly appreciated.

lindaprocopio

I got mine from the oncology nurse at radiation. ASK for one.
Seems like radiation oncologists hate to tell you that they may have damaged you in any way. Please ASK for the dilator, as they will very likely have them there. Most of the women I know got them from the radiation staff when they 'graduated' from brachy radiation, but a few of the women posting here had to broach the topic themselves. Pull one of the radiation staff aside and ask for one. Even if you are in a commited relationshop or married, you should always get a dilator and use it every day you don't have intercourse, even days that you do get lucky. I've used mine daily for the last year; it's no more of a big deal to use than inserting a tampon. It will actually help your sex life if you use it faithfully, because you will always have left-over lubrication from the dilator treatment and be 'ready' if an opportunity presents itself. Scar tissue can build quickly and you want to be proactive and prevent that. You'll develop a routine and find a time (10 minutes a day) that works for you.

Did you have tissue assays done? If your cancer is 100% ER- and PR-, you can use a prescription hormone cream on the dilator 3 times a week that really allows the best result. (most UPSC is a 'type 2' non-hormone-receptor cancer and ER- and PR-. Most of the other endometrial cancers are ER+ and PR+, and for ER+/PR+ hormone cream is a little scary to use. You get the prescription from your radiation oncologist or gyne-onc) I compromise and use just a dab of the hormone cream once a week and it really helps keeps.

RGW

lindaprocopio said:

I got mine from the oncology nurse at radiation. ASK for one.
Seems like radiation oncologists hate to tell you that they may have damaged you in any way. Please ASK for the dilator, as they will very likely have them there. Most of the women I know got them from the radiation staff when they 'graduated' from brachy radiation, but a few of the women posting here had to broach the topic themselves. Pull one of the radiation staff aside and ask for one. Even if you are in a commited relationshop or married, you should always get a dilator and use it every day you don't have intercourse, even days that you do get lucky. I've used mine daily for the last year; it's no more of a big deal to use than inserting a tampon. It will actually help your sex life if you use it faithfully, because you will always have left-over lubrication from the dilator treatment and be 'ready' if an opportunity presents itself. Scar tissue can build quickly and you want to be proactive and prevent that. You'll develop a routine and find a time (10 minutes a day) that works for you.

Did you have tissue assays done? If your cancer is 100% ER- and PR-, you can use a prescription hormone cream on the dilator 3 times a week that really allows the best result. (most UPSC is a 'type 2' non-hormone-receptor cancer and ER- and PR-. Most of the other endometrial cancers are ER+ and PR+, and for ER+/PR+ hormone cream is a little scary to use. You get the prescription from your radiation oncologist or gyne-onc) I compromise and use just a dab of the hormone cream once a week and it really helps keeps.

ER/PR
My pathology reads:

ER 80-90% tumor staining, 3+ intensity
PR 60-70% tumor staining, 2-3+ intensity

I'm not sure what that means.

kkstef

Dilators
Linda is right...ASK for one. I was oblivious to the problem and my radiation oncologist never mentioned it. After many months, I asked my GYN-ONC and he said "didn't they give you one in radiation? My answer was "NO". He had his nurse get one for me, and he explained how to use it, etc. I don't think we should have to ASK.....but from reading on this board, I learned about the need and I did ASK! (there was no charge for it).

So...ASK!!

Karen

susie1143

Sensitive subject
Sorry to hear about your partner. Ask the radiation oncologist. They gave me one for free. (I only use it when I travel). Also, I use an over the counter vaginal lubricant with the dilator.

TiggersDoBounce

RGW
First, sorry for the breakup...Hope you are hanging in!

Secondly, like all the other ladies said, call the Oncology/Radiology nurse, they can get one for you...

Keep your chin up

Laurie

RGW

TiggersDoBounce said:

RGW
First, sorry for the breakup...Hope you are hanging in!

Secondly, like all the other ladies said, call the Oncology/Radiology nurse, they can get one for you...

Keep your chin up

Laurie

update
I asked the rad/onc RN about dilators today. She got a prissy look on her face and said, "Doctor gets to decide if you need dilators." I thought to myself, "like hell he does." I am going to my surgeon today to get internal stitches out (had a tear in the vaginal cuff 6 weeks after my hysterectomy). We have a good rapport, so I think I will ask him.

My guy was my rock from the beginning of this cancer adventure. I am having a very hard time coping. All of my girlfriends have been great, but they aren't there in the middle of the night to hold you when you are crying. I still have another 3 rounds of chemo and had counted on him being there for me.

kkstef

RGW said:

update
I asked the rad/onc RN about dilators today. She got a prissy look on her face and said, "Doctor gets to decide if you need dilators." I thought to myself, "like hell he does." I am going to my surgeon today to get internal stitches out (had a tear in the vaginal cuff 6 weeks after my hysterectomy). We have a good rapport, so I think I will ask him.

My guy was my rock from the beginning of this cancer adventure. I am having a very hard time coping. All of my girlfriends have been great, but they aren't there in the middle of the night to hold you when you are crying. I still have another 3 rounds of chemo and had counted on him being there for me.

RGW
I am so sorry to hear about the break up in your relationship. Obviously since he had been so supportive of you, I can only imagine what a shock this must be to you. I am so sorry that you are dealing with this emotional upset AND cancer at the same time. Just doesn't seem fair, does it?

I am glad you asked the radiation RN about the dilator but INCREDIBLY disappointed in her response. AND her attitude was BAD! Very unprofessional to say the least. Am glad that you will be able to talk to your surgeon about this.

Please know that we are all here for you! Keep us posted!

BIG HUGS to you!!

Karen

kathijr

kkstef said:

RGW
I am so sorry to hear about the break up in your relationship. Obviously since he had been so supportive of you, I can only imagine what a shock this must be to you. I am so sorry that you are dealing with this emotional upset AND cancer at the same time. Just doesn't seem fair, does it?

I am glad you asked the radiation RN about the dilator but INCREDIBLY disappointed in her response. AND her attitude was BAD! Very unprofessional to say the least. Am glad that you will be able to talk to your surgeon about this.

Please know that we are all here for you! Keep us posted!

BIG HUGS to you!!

Karen

Sensitive Subject
I am so sorry to hear about the demise of your relationship and hopefully, you have found a way to move on. How devastating it must be to loose the person who saw you through this very difficult experience! Anyhow, it sounds like the Radiation RN was incredibly insensitive and obviously did not realize how difficult this was for you to bring up in the first place. I was only diagnosed with uterine cancer two weeks ago, but I've learned that there are many well-intentioned people out there, but they don't always act or react appropriately. You must become your own advocate and try not to let this bother you. Wishing you peace and recovery and love.

bea-mil

kathijr said:

Sensitive Subject
I am so sorry to hear about the demise of your relationship and hopefully, you have found a way to move on. How devastating it must be to loose the person who saw you through this very difficult experience! Anyhow, it sounds like the Radiation RN was incredibly insensitive and obviously did not realize how difficult this was for you to bring up in the first place. I was only diagnosed with uterine cancer two weeks ago, but I've learned that there are many well-intentioned people out there, but they don't always act or react appropriately. You must become your own advocate and try not to let this bother you. Wishing you peace and recovery and love.

HYPERBARIC OXYGEN THERAPY FOR LATE RADIATION TISSUE INJURY IN CE
HYPERBARIC OXYGEN THERAPY FOR LATE RADIATION TISSUE INJURY IN CERVICAL AND OTHER GYNECOLOGICAL MALIGNANCIES
Here is the website I've got from Culka:
http://www.albertahealthservices.ca/hp/if-hp-cancer-guide-gyne003-hbot-for-lrti.pdf
The treatment is approved by FDA as well as here in Canada and may help for those with radiation side effects.
Bea-Mil

RachelKass

Wow. I didn't have partner
Wow.

I didn't have partner at the time of my surgery, the subject never came up.

However, as time has passed, I've *asked* three different doctor's about what happens next since I have no longer have a cervix and the speculum is almost TOO big anymore. I end up with my question being treated as a horrendous bother to them AND my latest doctor (a female to boot) seemed disgusted that she had to use a smaller speculum even *after* being warned ahead of time.

So. Bottom line is I have gotten no answers to even basic questions and have no ideas where to even start loooking for the answers to: What will I have to do if I ever am so lucky as find someone that wants a sexual relationship with me...

How naive am I? I've given up asking.

Rachel

Kat Lady

RachelKass said:

Wow. I didn't have partner
Wow.

I didn't have partner at the time of my surgery, the subject never came up.

However, as time has passed, I've *asked* three different doctor's about what happens next since I have no longer have a cervix and the speculum is almost TOO big anymore. I end up with my question being treated as a horrendous bother to them AND my latest doctor (a female to boot) seemed disgusted that she had to use a smaller speculum even *after* being warned ahead of time.

So. Bottom line is I have gotten no answers to even basic questions and have no ideas where to even start loooking for the answers to: What will I have to do if I ever am so lucky as find someone that wants a sexual relationship with me...

How naive am I? I've given up asking.

Rachel

Sensitive Subject
Wow! RGW, I am so sad for you at losing your partner. That must be very hard right now. Hang in there! Re: dilators, I can not believe the answers you and others are getting! And a doctor who is annoyed at having to use a smaller speculum; well, there is no excuse for that. Sounds like you have been treated as second class just because you had this cancer and treatment! To be honest, though, I don't know what they will say to me at my post-radiation check up, but if I get any of that crap, I will sure say something in return. I mean, it is not like you will use them to pleasure yourself, and even if you did, what business is it of theirs? You just want to keep the vagina open, and your options as well. At present, I do not have a partner; my husband passed last November, and at this time, I can not see myself having sex with anyone ever again. However, it is important to be comfortable for future examinations and just for general health reasons. Ideally you would get a dilator through your doctor, because they could size them better, but if not, there are stores where you can purchase them, or for privacy, you can order by mail; Dr. Leonard, Harriet Carter, Miles Kimball, all should have something that would work. Good luck to all of you! Take care and don't let these uninformed, uptight nurses and doctors get you down!