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Wow, I am so glad I finally found you! Wow, I am so glad I finally found you!

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  #1  
Unread 01-06-2004, 04:22 PM
Wow, I am so glad I finally found you!

I am sitting here with tears in my eyes. For the first time since Feb. 3, 2003, I do not feel completely alone. Yes, my Hubby is great but he does not get it.

I spent hours on the internet trying to find someone, anyone that had any experience with vaginal cancer and the associated problems. I never found anyone. Many Gynelogical cancer sites didn't even have a section for vaginal cancer. I have felt so alone.

I finished treatment in June 2003. I had a TAH/BSO along with a partial radical vaginectomy and 25 external and 3 HD internal radiation treatments. In the beginning I used the dilator diligently. To the point of tears it hurt so bad. The Radiation Doc even told me to take a break because I was kind of burned inside. He also told me I have scarring. Now the problem is my Gun/Onc (whom I really love) just keeps telling me to force my vagina to stretch. Last time I saw him he admitted it would not stretch very much. But again he told me to just keep stretching even force it. It hurts and bleeds just using the small diliator. There is no way the medium dilator will go in. Sex has been out of the question for over a year now (prior to finding the cancer sex had been very painful).

Will my vagina ever cooperate and stretch? I am really getting worried. Also I have no sex drive at all. I am really depressed and having a hard time with this.

I am so glad to find the Hyster Sisters. I just can't believe it took me this long.

Sharon
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  #2  
Unread 01-06-2004, 05:55 PM
Wow, I am so glad I finally found you!

(((Sharon)))

It sounds like you need a big ! We are also glad that you found us. The more of us that can support each other, the better off we all are.

I had vaginal carcinoma-in-situ, so since mine was not yet invasive, my only treatment was removal of the abnormal cells. The surgeon took a good-sized piece of my posterior vaginal wall right near the vaginal entrance. I was not cleared to try sex until almost 4 months post, and the doc sounded quite skeptical at the time. Well, I soon found out that I was so small, there was no hope of being successful. I couldn't even get a finger in without pain. So, with the support of my cybersisters who were going through radiation at the time, I started working on the situation. I used lots of lubricant (Astroglide worked best for me), and gradually I worked up to the smallest vibrator I could find--a little bigger than my index finger. I worked with it by inserting as far as I could, and then applying pressure to the various sides and the top of my vagina. I could tolerate only about 2-3 minutes at a time, and I did it twice a day. I also alternated using Vitamin E oil with calendula oil to soothe and heal my sore vaginal tissues. It took months (probably 12-14 before it was pain-free), but I did eventually get back to adequate size. However, even a year later, I find that I need to have sex or use the dilator at least twice a week, or I quickly lose what I gained and the nex time I try to be intimate, well, I usually end up with a tear. And that's just from surgical scar tissue--your situation is a little different because you are dealing with burn scar tissue which is somewhat tougher. Be diligent and patient, though, and hopefully you will make some progress.

Are you permitted to use some type of hormone? If your hormones are off, your vaginal walls will get thin and will bleed easily. You might like to check with your doctor and see if there is something that can be done to help in that area. Or check out our Hormone Jungle to see what kinds of ideas they have over there.

Good luck, Sharon! I hope things start turning around for you. Express your feelings all you like here--we have very broad shoulders and we are open 24/7.

  #3  
Unread 01-06-2004, 06:08 PM
Thank you

Jeanine,
Thank you for your quick reply. Last time I saw my Doc he said I could use the Vagifem tabs in my vagina that I had left over from before we found the cancer. I was using the Vagifem for the painful intercourse. I went through menopause relatively early at 44. I am now 48.

I intend to find some of the Vitamin E cream you mentioned. Right now I am using Zylocaine cream the radiation onc. gave me for lubrication. However, if we ever get to have sex again, I don't think that would work too well for my Hubby. I will also try some Astroglide.

I need to find something in between the small dilator and the medium one. I read some back posts about candles. I may look into that idea as well.

Again, Thank you so much.

Sharon
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  #4  
Unread 01-06-2004, 07:07 PM
Wow, I am so glad I finally found you!

My doc suggested candles to me. He said the advantages were that they came in a variety of sizes, so sizing up was easy, and if I was ever traveling and forgot my dilator, well, it was easy to pick up a candle and condom at the store! I mentioned it to a friend of mine who was traveling here from overseas, and she was overjoyed--it was her biggest fear that her luggage would be searched and that she'd be confronted with an embarrassing situation.

One thing I found that helped me as I was sizing up: once I was comfortable with a size and it was no longer painful to use it, then when I started sizing up I would start a session with the current comfortable one, do a little of the "stretching" with it and then try to ease into the next size up. This typically took a few days to accomplish (being able to insert the new one), and I continued to start with the smaller and graduate to the medium until the medium didn't hurt anymore. then after a week or two of pain-free medium use, I'd start with that and work toward the next. Then eventually, I'd start with the largest one I had and worked up to the real thing. It was a few months before I'd be intimate without doing my prep work first.

  #5  
Unread 01-07-2004, 10:48 AM
Thank you!

Dear Jeanine,

Thank you for your interest and encouragment. I was discouraged to the point of having given up on the dilator except for very infrequent use to keep my Hubby happy.

I have renewed hope. I am going to start working on it again.



Sharon
  #6  
Unread 01-07-2004, 12:22 PM
Wow, I am so glad I finally found you!

I just wanted to give you a big and a big

I'm so glad you found us. There's nothing so alone and not getting good advice. I would also add that using the vagifem can really make a difference. There are some other similar kinds of local help also, but given the dilator problem, that is probably the least likely to cause a reaction from such delicate tissues. Without hormones, even those of us who had no radiation can end up with a lot of problems from sore, dry, bleeding tissues without a little hormonal help.

I'm so glad Jeannine could give you such good advice.
  #7  
Unread 01-07-2004, 01:12 PM
Wow, I am so glad I finally found you!

Dear Trish,

Thank you for your kind words. It is nice to know that about the vagifem. My Doc really did not say too much about it. It was prescribed by my regular Gyn before the cancer, but shortly after I started using it , we found the cancer. So, I had stopped using it almost as soon as I started it.

Thanks again.
Sharon
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