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sandysp's picture
sandysp
Posts: 852
Joined: May 2011

To make a long story short, my husband and I have been having some problems. But being an optimist from birth I have been regularly using the large dilator all throughout treatment and until now. Last night, after watching "A Week with Marilyn", we had a breakthrough somehow and it was almost like old times except my vagina. I so wanted to be my old self but it hurt. It burned and stung and it seemed like there was an obstruction, but I can't be sure. My husband says its likely just from the trauma. I know we have had this discussion before but can we have it again? I am a year post tx August 15th. He is a gentle man and this is very hard for him. He never even wanted to deflower anyone. It's obviously hard for me too. Any encouraging news out there? I am happy to have some sexual energy back. I had Absolutely Nothing going on in that department until last week.
Thanks,
Sandy

torrance
Posts: 118
Joined: Jan 2012

Sandy,

Continue using the dilator, regularly for sure. The sensation you were feeling is probably caused by the friction and will continue to improve as you continue to heal. Are you using premarin? If not check into it as it helps that tissue become more supple and stretchy. The obstruction could be a "stenosis" or narrowing that can be worked out. If you haven't already had a check by your gyno, you should just to make sure that is all that the obstruction is. My stenosis, changes as the healing continues. We also can sometimes have shrinkage in the depth as well. Make sure your gyno is experienced with radiated tissue before they try anything, or ask for a referral to a pelvic physical therapist. The pelvic PT is not the same thing as a physical therapist, they are more focus on internal issues and the pelvic floor muscles. I can not even rave enough about mine, if you remember when I started, a Q Tip was impossible and now I have a sex life. Please feel free to contact me privately if you need additional info.

Joanne

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

JOANNE,
We can be happy for each other in the most intimate of life details, us survivors. I was just now reading other posts on the Discussion board about this and saw your post. Thank you for taking the time to say it again. I do not have a GYN presently. That's a long story. I was uncomfortable in that area for a long time. My last GYN thought my problem was psychological when I was crying after the exam and referred me to a very insensitive Psychiatrist. It was a disaster that kept me from seeking help from anyone. Luckily, when I many years later passed blood, I had a good gastroenterologist to call. He diagnosed the invasive anal cancer and then I put together my file for MSK to review with a ct scan which showed the masses in my ovaries to be the first order of business. The rest is history. But I need to find as you have this GYN PT to help me get over my fear of this type of exam. I was operated on by a GYN Surgeon at Sloan but now that I am cancer free, cannot go back to him. I did not tolerate his exam well but it really wasn't too bad. With the Benign Ovarian Cysts gone now, it should be somewhat easier. The large dilator is not a problem but I do have shrinkage in the depth and width. My husband isn't shaped like the dilator. I have hope now! Thank you so much.SANDY

torrance
Posts: 118
Joined: Jan 2012

Sandy,

So glad to hear that you haven't given up hope. When you find a gyno, speak up and share your history and concern, request the use of a pediatric speculum. A GOOD gyno, will not force or pressure you and I think you will find a pelvic PT very sympathetic and understanding. For the life of me I never knew there was such a thing, or that I would be needing one. Thank GOD that they do exist, and that for some reason, they found this specialty. I am now working with my insurance carrier/provider to expand this specialty. You may not be able to overcome the depth issue, however it could be something that could be worked out. Luckily our husbands are not shaped like a dilator and are far more flexible! You're welcome, Joanne

shirlann54
Posts: 161
Joined: Aug 2011

I went to the a gyn about 6 months after treatment ,We couldnt have sex i used the dilator but it still burn so much inside and hurt so bad we couldnt have sex .And husdand was very careful ,Went to the gyn he had me start using the premarin vaginal cream .And it wasnt no time about a month we could have sex . It hurt a little bit the first few times .I put it in 3 times a week ,But if i foget a few times it well start hurting again .I just wanted to tell you this really ,Shirley

Gulamin
Posts: 132
Joined: Dec 2010

Yes we had issues too. I am out almost one an a half years (blessings) and I found that sticking with it helps. The more time went by between having sex, it felt I was all closing up again, bleeding during intercourse. But, the more we tried again, the more the body and mind opened up, literally. You will be ok over time. You made the first important step to overcome whatever is....

lowens's picture
lowens
Posts: 33
Joined: May 2012

Perhaps I went to my ob/gyn too soon. I am 52 days out of treatment (just over 7 weeks). Last week i had a little bleeding so I tried inserting just a THIN tampon. It would not go in - just the tip and so much pain - like an obstruction. So, I went to the dr and saw her PA who used the pediatric speculum and did a physical exam. OMG!!!!! I cannot describe the pain. I wanted to cry and almost did once she stepped out to speak to
doctor
. I thought I had to urinate so I went to the restroom and again, OMG!!!!!! The burn; it felt like a razor blade was cutting me. It is now 5 hours later and I tried again to urinate. I think it is time for the leftover Hydrocodone! SEX????? I am not married anymore but I don't think that will ever happen again for me at this time. The small dialator I was given is much bigger than the lite tampon that wouldn't go in. The PA gave me Vagifem to insert; it has estrogen in it. She said it may help open me up. They drew blood to check my hormones. I hope I didn't screw up by going in too soon. Again the PA said she could see my cervix and I was not too bad.... meaning she has seen vaginal cancer patients who are basically closed. I was not.

How soon did you all begin using the dialator after treatment?

Disappointed and Very Uncomfortable,
Lisa

ppaseka's picture
ppaseka
Posts: 68
Joined: Oct 2011

My wife used her dialators the entire time she was going through treatments except for about three weeks when the burn was the worst. She said she is glad did.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I know this is discouraging, but don't give up on the use of a dilator (or small tampon to begin with). I began using the dilator a couple of weeks after treatment ended, but I have to say, it was not a pleasant experience. However, with lots of lubrication and getting myself to relax, it soon became easy and I graduated to a bigger dilator. Sex is still very uncomfortable but possible. I also use Vagifem in tablet form and I really do think it helps. Hang in there!

torrance
Posts: 118
Joined: Jan 2012

Lisa,

Don't panic, you will know when it is right. I started with a pelvic physical therapist seven months after end of treatment. At that time a Q-Tip was a challenge and things seemed impossible. I have been having therapy for 8 months and things are going well. I will always have to use a dilator, not just to be able to have sex, but you need to keep things open for future exams. I had to have my first exam under anesthesia. Take things slow and if you can find a good pelvic physical therapist they are most helpful. You can also ask your DR for topical lidocaine to help with the pain. Remember, lots of lubricant and to relax as best you can. Let me know if I can offer you any more info or insight.

Joanne

lowens's picture
lowens
Posts: 33
Joined: May 2012

A feeling of PANIC is exactly what I have felt lately. Since the exam, I basically decided NO SEX or EXAMS was fine with me for the rest of my life with the pain I experienced at the GYN's office that day. But, after reading your response I feel much better. I think I will investigate Pelvic Physical Therapy. I don't know if I have to get a referral or if it is something I do on my own but I am certainly going to be pro-active. Thank you SO MUCH for reading and posting. My sister keeps telling me to quit reading things online about ANAL CANCER. I am glad I came back to the discussion board!

Lisa

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I was given a dilator by the Radiologist prior to treatment and used it throughout treatment. I can remember it feeling like I was pulling a bandaid off to get it in. I used the dilator religiously for quite a while but have fallen off in using it. It didn't help me with sex. I know what you mean about the burning. But seven weeks is really early. You are still in the throws of the most violent time of this healing. Although for me second to third week after my last treatment were my very worst days.

I am wondering if sex isn't also in my past. I am good enough to get an exam but I really don't have what it takes to be sexually satisfied anymore so far. I can get as far as to be good for him but not there for me yet if you know what I mean. It's just too painful.August 15 will be one year from last tx.

Thanks for your post. I haven't been to an ob/gyn yet. My Radiologist did my checkups and declared me "good."

All the best,
Sandy

torrance
Posts: 118
Joined: Jan 2012

Sandy,

Don't give up hope. I am more than a year past end of treatment, I have been going to my PT for five plus months. In the beginning it was as close to unbearable as it could get. Tears in my eyes. Now it is uncomfortable but continuous progress. The tissue in that area is so fragile that in the beginning, just touching it would cause it to bleed just a bit. If you remember, a q-tip was like king kong for me! I am still having "tearing" with the tissue that is very slow to heal. One of the tears developed an infection so I had to stop "treatment" for two weeks. This has meant the loss of some of the stretch, but I'll get that back. I am back to "stretching" twice a day. Slow as she goes.

Joanne

katiekatjacob
Posts: 8
Joined: Apr 2012

Hi Sandy, good question! I'm in my own cancer battle myself (breast cancer) and have found HealthTap to be a good site to find information from real doctors when you are feeling scared or unsure about something. They might be able to provide answers to you.

HealthTap is for asking health related (going back to work questions) of doctors and specialists. The company has been getting a lot of press lately and has been helping me with a lot of my own questions.

I guess HealthTap is coming out with a huge new product today, has anyone tried it yet? I just read this article: [URL="http://blogs.reuters.com/small-business/2012/06/28/tech-tonic-checks-in-with-healthtap/"}

Let me know if they are able to help at all or if you find any other sites that are useful.

xoxo Katie

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Thanks. I will try it.

Sandy

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Thanks. I will try it.

Sandy

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