Had Surgery Yesterday for Vaginal Stenosis and I'm l'm Probably More Frustrated Than Relieved!

eihtak said:

LindaBaehr...

Hi,

Like all other side effects some have many long lasting issues, and others have very little. There was little or no discussion by my health care team about stenosis to me either and learned about it mostly from this forum "after" the fact as well. (I was dx 6 1/2 years ago) About a year after treatment I ordered a set of dilators from a company called Vaginismus and followed their recommendations for use, starting with the smallest size and working my way up....never did get past the third size. I used them faithfully for quite a while, but in the last couple of years I use them only once in a while. I found it worked easiest for me to keep them in the bathroom and insert when relaxed and in the shower. I am not sexually active at the time and merely wanted to be able to have a pap and pelvic exam with as little discomfort as I could. I don't honestly know if they made a difference, while my first post treatment pap test was not fun, it also was not all that painful and no different than my most recent one. I do however have my doctor use a small or pediatric speculum and I am prepared to bleed during or after. It may be wise to discuss this concern with your gyn to decide what may or may not be needed.

Good luck.....and be well!

Also, congrats on the One Year Mark!!!! Yay!!!

katheryn

Thanks!

Does anyone know how long post-treatment these things can crop up, though?  It seems, from what I have been reading here, that some people have had things develop even years post treatment?  I can't even imagine things getting worse.  

Different side effects crop up at different times. I can't remember for sure how far out from treatment you are but I was thinking a year? I would think the vaginal stenosis would have occurred by now if it's going to. Vagina gets shorter and more narrow, scar tissue makes it feel less flexible, sometimes the walls of vagina stick together (adhese) and you can feel this if you insert your finger in. On the other hand, secondary cancers caused by radiation like bladder cancer can take 20 years to show up. Radiation is the gift that keeps on giving!

I just read through all these posts and I'm so glad I did,  so informative!  My radiation nurse gave me one dilator before my treatment started and told me to start using it 2 weeks after treatment ended.   Once I get it past the rock hard perenium its fine,  my insides are still pliable, but I hate the plastic the dilator is made from.   It's not smooth,  so it scratches when I put it in and take it out.  ( I'm sure a man made it.) I'm going to look for some softer ones,  and a kit with different sizes,  what a concept!

As for diet,  I'm glad to hear that a lot of you are still eating sugar and surviving.   I love it too but I'm trying to only eat it in fruit.   Im still eating refined flour,  mainly because whole grains make the diarrhea worse.   Hard stools are not an issue for me,  not pooping in my pants is. .  I eat a lot of protein and fat to try to gain back the weight I lost.   And,  from what I've read,  vitamin d is very good for us,  especially from the sun.   I got a tan this summer for the first time in many years. 

Anyway,  thanks all,  I love this forum, and  love to all of you!  

Jane

Those are the dilators I'm going to get.   I think I will go see my obgyn first, find out how things are looking down there,  and get her advice on what sizes to get. 

I am guessing that those dilators in the link are flexible.  I have managed to graduate to the larger size (out of the 5 sizes) but after a few days without using anything it it very uncomfortable.  I did end up ordering a Jelly dong from a sex toy catalog so that it would be flexible.  I had the flesh colored hard plastic dilators that were very uncomfortable.  The jelly dong allows me to shift positions without causing too much pain.  

I am 36 and probably haven't had sex since 2012. I have been seperated from my husband since then and it hurt even before that. I had lymphoma and all the chemo treatments, radiation, and bone marrow transplants that go with it... so now that ive had a hysterectomy, and i feel healthier, i kind of want to move on with my life. Will i ever be able to have a physical intimate relationship with another person ever again? What kind of surgery would i even look into. The hormone cream, and dialators have not worked for me. Please, any suggestions?

Dear Judy, Mom@3x, and Heidi - So sorry to hear what each of you are going through and the effect vaginal stenosis has had on your marriages for 2 of you. And Heidi, you have nothing to feel guilty about! You have survived cancer and should be celebrated. You are a hero. It's such a shame your husband is not open to alternative methods of intimacy because I am sure there are many. I am just five weeks post-treatment. But I lead a solitary life (by choice),  and have for many years. So I haven't had to face this particular consequence of treatment and how it affects sex life and intimate relationships.

kim