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Questions about side effects from HDR Brachytherapy Questions about side effects from HDR Brachytherapy

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  #1  
Unread 01-05-2004, 07:51 PM
Questions about side effects from HDR Brachytherapy

Hi ladies,

I just found this site tonight after my first 6 month check up. (I've finally passed the every 3 month mark!!) What a great site!! I wish I had found this site when I was going through my surgery, radiation and chemo!!

Is there anyone out there you can tell me what there side effects from this are?? I have been told that my vaginal canal is narrowing and getting shorter. I have to admit I don't use my dialator as often as I should, but today I was told that it should stop narrowing now?? I was also given a rx for premarin cream to insert 3 times a week to help with intercoure?? My doctor told me that intercourse is painful partially because my walls are very thin, and this could help?? Intercourse is not the same as it was before!! Does it ever get better??

Guess I just needed to vent to you all, as I am pretty young and none of my friends have any idea what I'm going through!! They just laugh about the hotflashes!! (I don't always find it very amusing!!)

Thanks for listening!!

Lori
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  #2  
Unread 01-06-2004, 08:34 AM
Questions about side effects from HDR Brachytherapy

Hi Lori,

Although I am sorry for your problems, I was quite glad to read your post. I have needed someone to talk to about this that is not a man. They just do not get it.

I also had the high dose brachytherapy. I also do not use the dilator as much as I should. It is painful and I bleed afterwards. The Doc just keep telling me to force it and have sex. It just does not work. I can only use the small dilator. Between the partial radical vaginectomy and the radiation it just does not stretch enough.

I finished treatment the end of June 2003 and during that time I did use the dilator regulaly twice a day. At one point it was so painful, I would just cry while I was doing it. The Doc told me to stop for a couple of weeks. And it does not hurt as much as it did but there is no way I can force the medium dilator. Something will break first.

I know you were looking for answers and I don't have any. I do know that even if I go a while without using the dilator, my vagina does not seem to get any smaller. The small dilator always goes in. It just won't get any bigger.

Thanks for posting. I have felt so alone in this. I love my Doc, he really is great, but he has not been really helpful with this. My hubby is very understanding. Although we have not had sex for over a year, he is still being very patient. But he does get upset with me when I don't use the dilator. I am just discouraged. I don't think my vagina will ever be big enough again.

Thanks for sharing.

Sharon
  #3  
Unread 01-06-2004, 09:53 AM
Been there and still am (sigh)

Hello ladies,

I also have similar problems. I was treated for Vag. Cancer and finished treatment in Sept. Yes, yes, the brach radiation is the worst, I think I was fine before that. Since I have been a member here for a while, I was always reading about the importance of dilating. But everytime I asked my dr's about it, they acted as if I was crazy. I told them I wanted a normal life again (my hubby and I have only been married one and half years) so our sex life is important. Anyway, I since I did not have a kit, I did it the old fashioned way, I found that vibrators were way too big, like you I was narrower and shorter. So, I had read about someone using candles and that is what I did, still I could never get past about 3". After a while it was getting painful. I found that KY was not good but did find that olive oil was quite good and is a natural product. Still I had pain with it. My doctors told me to stop, which I did about 2 mo's. ago. Interestingly stopping seems to have helped heal some things.
But I don't know if it will work.

My husband has been patient, even though it's been about 6 months. Still, we want our life back. Recently we tried again, but I was very relaxed at the time, and we actually got somewhere. Sadly, it was not normal as hoped and my skin did tear a bit. But I was not screaming in pain as before... so perhaps there is hope. We have not tried again.

Would appreciate any other ladies and input and things you have found that make it easier.

Many hugs
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  #4  
Unread 01-06-2004, 04:10 PM
Thanks!!

Thanks ladies, thanks a million for letting me know that I am not alone!! Sounds as if we are pretty lucky to have such patient husbands!! I really can't imagine how my husband must feel, I only know that before all of this we had a great sex life and it is almost none existent now!! I know how much that I hate it!! And yes, my husband gets frustrated when I don't use my dialiator!! My theory to him is, I would much rather have the realy thing!!! If it hurts with the dialiator, I would rather it hurt with him!! He feels much differently about that!!! I suppose I can understand that.

Sharon, I'm with you, I love my Doc, and would be devestated if I couldn't go to him, but I told him that he really must not know how much it hurts to use the dialiator becauce he told me the same thing!! Force it in, even though it hurts and don't stop having sex!! Easy for him to say!! I'm as discouraged as you!! Thanks so much for sharing!!

Maria, thanks so much for your ideas!! I have found some lubricant that I bought at a fantasy party called Slippery Stuff. I don't know if it will work for everyone, but it's the best that I've found yet!! My husband and I havent given up yet but it's been 2 yrs and 9 months since they found my cancer and I'm just waiting for the day for sex without pain!! We've made a pact not to stop trying!! For quite a while we didn't try at all after sex that was very painful, my husband said that he couldn't stand to hurt me!! So a New Years Resolution came about!! I can only hope for the best!! Thanks for sharing!!
  #5  
Unread 01-06-2004, 10:53 PM
Questions about side effects from HDR Brachytherapy

I also had undergone five doses of Brachy. Three of them I had to be put under general anesthia and the other two I was concious. The three I had to be put under was because they had to insert the instrument into my uterus through the cervix (OUCH!) thank goodness I was out. But what I discovered was that they were very high doses and yes my left side of the my uterus and vagina have shrunk tremendously. The problem I am having now is incredible pain when I use my dialator. I feel like I am hitting the tumor site and it hurts!!! I am hoping that because of the tremendous about of radiation I received is the reason for the 24/7 pain I experience in my pelvic, hips, legs and low back. As for the Hot Flashes......WOW!!! They are horrible!! I have had to go and buy a small chinese fan that I can carry in my purse because I never know when they will hit me.

As for sex...........NO WAY!!! The thought of putting anything bigger then the dialator that I am using is terrifying. I wish I had your courage to try.

Hang in there Lori!
  #6  
Unread 01-07-2004, 10:19 AM
Not Alone Anymore

Hi Sisters,

While I am really very sorry for your problems stemming from your treatments, I am so glad to not be alone with this anymore. I was really beginning to feel like a nut case or something. I had two Docs tell me to just have sex. Go ahead push that dilator in there! I tried to make them understand that it just does not work. It does NOT stretch! Not only that it hurts.

One Radiation Doc did seem to understand and he prescribed Zylocaine cream (lidocaine) to use as a lubricant. That does help with the pain. I use a little tiny dilator to put the cream in and wait a few minutes then use my next size dilator. It still does not stretch it but like I said it does help with the pain.

Thanks for being here.

Sharon
  #7  
Unread 01-09-2004, 01:04 AM
Questions about side effects from HDR Brachytherapy

I have a problem undergoing pelvic exams - speculum insertion extremely painful. Had this problem even before my radiation treatments (external and HDR) and now impossible. I was just wondering if you are only able to insert the small vaginal dilator, are you still able to undergo pelvic exams without a great deal of pain? If so, how? My gyne says he is using a small speculum but still no go.
  #8  
Unread 01-09-2004, 02:41 PM
Questions about side effects from HDR Brachytherapy

Wow. I guess I have been very lucky. I had internal and external radiation with chemo but no surgery. My rad/onc said that as long as I had sex every week or so I would be fine and would not need use a dialator. I finished treatment in July and first had sex 3 weeks later. It hurt a bit at first but was then fine. I still have spotting after sex but I saw the gyn/onc this week and he said that is because of scar tissue and thining of the vaginal tissue, both due to radiation. He gave me Premarin to use 3 times a week, to build up the vaginal tissue.

Perhaps things are different for me because I had no surgery. I am so sorry to hear what the rest of you are going through. How awful! Your doctors should be more understanding and they should be offering you better solutions. I am 57 and did not want to face a life without ever having sex again. And you are all younger. You all shouldn't have to be facing a life without sex either! There must be some other solutions to these problems!

Small roar, what caused your problems before radiation? Have you ever been able to have sex? Was the doctor ever able to examine you? I am so sorry, I know it must be scary for you.

Hugs to all,
Janie
  #9  
Unread 01-09-2004, 03:45 PM
Questions about side effects from HDR Brachytherapy

Hi Janie,

I have never been able to have intercourse which I have never mentioned to anyone because I'm embarrassed. My husband and I have sex using other methods and objects which can fit into my vagina. According to my radiation oncologist, I apparently have a very small opening but I've never had a need to deal with this because I've avoided pelvic exams and doctors forever which is why I probably ended up with my cancer. Anyway, I did have one successful pelvic exam ten years ago but that was it. When I was finally forced to see a doctor due to the cancer, it became apparent that pelvic exams were not going to work for me. During my treatment, I underwent a D&C and biopsy via anesthesia and all the checking was done while I was under. Unfortunately, now that I have to undergo routine pelvic exams to check on cancer recurrence, I have a problem since it seems ludicrous to go under general anesthesia just to have a pelvic exam. So, I was just wondering how others might have dealt with this issue.

SmallRoar
  #10  
Unread 01-09-2004, 07:14 PM
radiation problems

See a plastic surgeon. They are used to stretching tissue. My gyn/oncologist recommended one to me and he worked with the plastic surgeon. Sex is not how it used to be but it is definately pleasurable. My female radiation onc. told me to see a psychiatrist because it was in my head. My male gyn/onc. was great and totally understoon.
I hope things get better for you. It is such a personal and private issue. Someone would have a mastectomy for breast cancer and have reconstructive surgery. You have lost the use of your vagina due to cancer. You deserve to do what you can to gain it back.
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