5 YR ANAL SURVIVOR.. VAG. STENOSIS NIGHTMARE,,CRYING, CAN DIALATORS WORK AFTER ALL THIS TIME?

Phoebesnow said:

7243
Thank you for that info. And it even sounds like it could be fun. Therapists really are a blessing.

janke said:

Thank you for posting...I feel all of my doctors have abandoned
Thanks for posting about this problem. I also have the same problem. I had ana CX, under went chemo and radiation. Severely burnt by the Radiation. To make a very long journey short.....somewhere I developed complete vaginal stenosis. I am not a young woman but still very sexually active and did enjoy until I was so severely burnt intercourse was impossible.
I have a prior history of cervical CX, always followed all medical recommendations, and last yar 8 months post radiation my gyno. said .....no vagina!! What are you flipping kidding ME!!!!!! When did this happen!!! and why. Gyno blew me off.

I sought the assistance of my oncologist who said WHAT????????? MY radiation onco. said "this is a side effect" and I sought information on my own. Going to a Onc. Gyno. who tried to do a vaginal exam under anesthesia and ruptured my bladder. They have all washed thier hands of me. I am angry. It's not my falut and why didn't ANY of these medical professionals recommend premarin and dilators along the way??????????

They have made me feeel like it was my fault or something for not continuing to have realtions during radiation. OMG....I had 3rd degree burns exturnally, what the F..... did I look like on the inside, much less my skin whould have just peeled off in layers. I never thought to use dilators nor did I understand the benefits of premarin. I cry every day. And I am in the medical field. I just didn't know about the side effects of radiation. I did ask many many times. Everybody just blew me off. They saved my life..that is all that mattered.

I do understand I am alive and I am more than gratefull. But I think there is more to just curing someone. NOW IT'S ALL ABOUT THE QUALITY OF LIFE. And no one can help me with this.

janke said:

Yes over my pity party today
Yes over my pity party today and will consider myself to be fortunate. I can still orgasm, just not penatration. And my bowels and urinary tract are fine.

I guess what I really want to get out there is not about me.....it's aobut all the female newbys. After reading the above post, it seems there are quite a few of us who were not educated about stenosis, or it was briefly addressed and dismissed. I don't want anyone else to be DISMISSED! Or embarrassed about this issue.

My original concern is I have had a hx of questionable pap results, and have a family hx of ovarien and colon cx. Well how the heck am I to have a pap is you can't get there! That was my first problem even before sex.
Some of my doctors say -"don't worry you will never get cervical or ovarian cx" other doc's admit that is a "interesting question but don't know". The end.
Then there is the transgender surgeon who wants to rip out all of my female organs and create a vagina using some muscle and tissue from my upper leg.
I decided against the last --- seeings how all of my female organs seem to be one conneced mass.

I am severely confused for my situation. But I really want to get the word out there this problem might be avoided with a little preventive care and attention for other women about to undergo this treatment plan.

I am currently using the premarin, 3 times a week, 2 grams per application. And I can insert a dilator about 1 1/2 inches without pain. Will things ever change for me? I don't know, I hope I don't give up. The premarin is expensive. Does anyone use a generic?

Then there is always the issue of my marital status. I know this man loves me but good god who determined he should also pay the price. Ok that was stupid, if the role was reversed I wouldn't care if I ever had sex with him again as long as he was healthy and well. And I am pretty sure he feels the same but I just feel it is unfair to him.

God I sound crazy but these are the thoughts that run thru my head daily.

Well that's all I'm going to post for now. I am just going to continue reading post and look for answers

torrance said:

Progress is good...
Janke,

I know that 1 1/2 inches doesn't seem like much, hang in there. Before I started my "therapy" even a q-tip was not possible. I can proudly say that I have graduated to a size small dilator and am continuing to make progress. I am extremely fortunate to be working with an excellent physical therapist and a radiation oncologist that I have great respect for. My PT had never actually worked with a patient with anal cancer and primarily worked with those from the OB/GYN department. My situation was different from any that she had encounter and she has gone out of her way to improvise treatment. For example, when she first started just touching the tissue was extremely painful so she had to use a pediatric cathater(sp?) to apply lidocaine. The traditional "balloon" dilator that they use was out of the question so when the time came she used an anal dilator. Another thing that I think is helping is something my rad onc perscribed to increase circulation in that area. I have been very slow healing and developed radiation cellulitis so he perscribed Trental. It is usually give to increase circulation in the legs, but between this and the premarin, I think it is helping.

On a side note...I had an appt with my reg gyn dr today. She tried to do an exam, resorted to a pediatric speculum but she could not do a thorough exam. She thought she was seeing a hole and is concerned with it being a tear to the bowels so I will have an exam under anesthesia, possible for this Friday or maybe next week for a further check. The good news is that she is pleased with the "depth" and feels that that is as good as normal! YEAH! Now to work on the width. I also saw my med onc this week and all is fine! Next week will be back to the rad onc for my regular two month anoscope! Always something to look forward to.

I guess what I am trying to say is the progress is being made and that is a good sign that I will choose to focus on. As a control freak this whole experience has been a HUGE learning curve for me. Guess what I had NO control over what my body was doing to me or the treatment or the time it is taking to heal. I have had to learn patience with myself and allow time for healing. Hang in there, my hope is that you will continue on your road of healing.

dixiegirl said:

Try KY Liquibeads
They seem to help me some. I don't my sex life will EVER be the same. I'm 46 and this sucks.

donnawanna said:

vaginal stenosis

I had radiation treatment for stage 4 rectal cancer and wasn't told about vaginal stenosis.  I found out months later when trying to have sex was painful and impossible.  What a shock, thanks Tacoma General Radiation Docs!!  I haven't had sex for 10 years.  I struggle every day with depression and self loathing.  Why didn't I do something??!!  I feel hopeless and realize that everything in my life rotated around me being a desirable, sexual being.  I know I suck because of this, and I was a single working parent so I never did anything but try to get back to work and support my girls.  They are grown, successful women now and I am a sad, lonely, shell of a woman.  I have no friends, gained 50 pounds and hate waking up in the morning.  I know I need help but don't know where to go.  I've talked to counselors in the past but they don't get it.  I HATE LIFE WITHOUT MY VAGINA!!  And I hate myself for it. 

Although we all have some parts of this journey that are very similar, no two of us are exactly alike in how our bodies or minds react to what we've been through. I am so sorry that you are feeling this right now and please know you are not alone in your situation.  Radiation combined with other cancer related treatment has pretty much drained the sexual intimacy from my life as well. I want to encourage you to continue to seek professional counseling to help with this issue.  Like other things in life, you may need to go through a few before you connect with just the right help. Have you tried using dilators to increase the flexibility and lessen stenosis? Although best if started shortly after finishing treatment, I have been told to use at any point still has benefits. Start with the smallest and work up in size over time. I ordered a set on line from Vaginismus (I think that was the name....or something similar). Do not feel bad about missing your sexuality as it is a very important part of life and you deserve to enjoy it! There are specialists that work specifically on restoring or at least trying to restore what you have lost.

Are you working? Is there someone you can talk to there? Is talking to your daughters a helpful option?

Sometimes just throwing yourself into something new opens new doors. Maybe join a gym, get out and walk in an area where you may strike up conversations with others. I found that as I concentrated less on what I lost, I seemed to get back somehow something even greater.

Please stay in touch here.....feeling depressed and hopeless does not have to be your life because of all this, and there are many here that share your concerns.  We will all move forward one way or another together.

I am curious about the dilators, it seems many were never given this information.....has any doctor ever suggested this to you?

katheryn

Hello all. I feel your pain and confusion. I've been NED for 12 years and have definitely dealt with vaginal stenosis issues. My radiation onc mentioned I should try to have sex once I healed, and I was given a dilator on my final radiation check up and told to use it 3 X per week.  I wish they'd impressed more strenuously how important early intervention was, however! I didn't use the dilator early enough, or often enough, I think. After having painful sex for a couple of years, using Premarin when I remembered, my Gyn felt I was healed enough for her to try conservative surgery. She'd worried before that the tissue wouldn't be ready or that surgery could cause more problems. Anyway, the surgery was a godsend. I could once again have sex weekly without having pain during and after. Last year, she prescribed the Estring, and that has been incredible. I'm no longer dry and itching all the time. Sex is, again, easier than before. Life is not like it was, but it is much, much better. Talk to a good Gyn who understands the issues AC radiation produces, keep trying! We are worth it. Good luck and aloha.