Hello to all you brave ladies, you have been my inspiration and saving grace for a while now. I have been following this forum for 6 years, just joined today, and have never seen my problem posted before.
In 2016 i had a hysterectomy that should never have happened, restaged from 1B, to stage 3, then had chemo, radiation, 2 brachy. This has left me with a 2" vagina, and have been told that trying to have sex is now impossible, and not to even attempt it, as it could cause me to tear, causing fistulas and hemorrhaging.
I have recently reconnected with a man Iāve known for years, and we are very attracted to each other and wanting to have sex. Heās aware of my issues, and doesnāt want to do anything to hurt me, but, by god, i just want to be normal and have a sex life again .
I had talked to my Dr about a vaginal reconstruction, she says this is not possible for me, but never gave a reason .
I just donāt know what to do at this point, i feel so damaged and defective that I donāt think its fair for me to go any further with this relationship.
Has anyone else been told this by their Dr and tried to have sex anyway, and what was the outcome?
Thanks, Sharon
I am sorry for what you are being through. I am just wondering have you used dilator?
I think that you shouldnāt make a decision for him. Sex isnāt everything. You might not have physical intercourse but you might experiment with other form of sexual play like touching etc.
I think that you deserve to be happy and I would definitely support to continue this relationship with or without normal vagina!!
I had the same treatment as you in 2017; RH for what was thought to be a 1B1 (old Figo) which turned out to be a 2A. Histology indicated a significant risk for recurrence so I subsequently had Chemo-radio + 2 brachy. My vagina is also very short. None of my medical team have ever suggested I shouldnāt have sex again; in fact theyāve occasionally asked me if I was having sex and offered to refer me for psychosexual counselling because I said I was a bit scared.
I used dilators for about 18 months and the oncologist said it was OK to stop using them in that I was unlikely to get adhesions after that time, However, she also advised that if I wanted to have a normal(ish) sex life that it would help if I carried on with dilators. I decided to stop using dilators because at the time I couldnāt see I would ever want sex again. As a half way measure I changed to using a small silicone vibrator (nicer to use than dilators) on an occasional basis, albeit I havenāt used tit for some time.
So far Iāve not wanted to have penetrative sex but if that situation was to change I think I would build up gradually starting with using a vibrator and maybe dilators, plus plenty of lube, and see how it goes. If that were to prove difficult I can draw on the advice Iāve previously received from womenās health physiotherapist - a GP can refer.
Iām not an expert but donāt see why it wouldnāt be OK to experiment as you see fit; if it hurts then stop. But donāt be pressured into doing anything youāre not happy about. You could also get advice on the subject from Joās āAsk the expertā service on this website.
Thank you Maria for the advice. When I finished treatment in 2016 I was given a dialator, I tried that for a while, but it made me hurt so bad , I stopped using it. My Dr. was very concerned about me developing a fistula, said I was high risk for that. I started wetting myself at night when I was asleep, and totally freaked out, so stopped using it and have never used it again, or wet myself in my sleep either ! This was 6 years ago, and I just gave up on myself.
Hi Jazza, Great to hear from you, I have read many of your posts and your treatment was almost exactly like mine. I also had the Da Vinci robotic hysterectomy, unfortunately the cancer was bigger than anticipated and they couldnāt get it all, so on to more treatment 6 weeks later.
Your advice about the vibrator and a little experimenting is a good place to start. I was married then , my husband was alot older, and we hadnāt had sex since 2007, so this wasnāt an issue. We are no longer together, and at a young 69 years old, Iām trying to re- invent myself.
I think if Iād been warned by my doctor not to have sex Iād want another discussion with them before attempting it. Fistulas are extremely difficult to live and deal with and a haemorrhage could be extremely dangerous. Is it really worth risking that?
Iām speaking from the point of view of someone who also canāt have penetrative sex due to not having much vagina left. I would not even contemplate sex.
Hi Lilypingu, Thanks for the reply, i do believe a consult with the Dr. is worthwile. Iām absolutely terrified of getting a fistula, from what Iāve read, they are hard to repair after radiation. I never though i would even be in this situation, contemplating sex again?? Maybe its time for a reality check. I appreciate everyoneās advice, Iāve had no one to talk to about such things.
I agree Lilypingu has made a very good point about having another discussion, because of your previous difficulties and your Drās advice.
My experience was different to yours ; I was OK with dilators (smallest plus next size up only) from the outset and for the 18 months or so that I used them.
As I mentioned I found a vibrator nicer to use, more comfortable than dilators. It might be something worth asking about in your discussion with the Dr. As far as my searches go, one of the smallest vibrators is the Immy from Jo Divine; size-wise I consider it to be equivalent to the second smallest dilator: https://www.jodivine.com/products/jo-divine-immy
Hi Jazza, I will definitely check out that site, sounds like a good place to start. I was given only a small dialator,about the size of a cigar, when treatment ended, and not much instruction other than turn it in each direction. I really wish I had been given some instructions on what to watch for as for any side effects. When I started wetting myself in my sleep, I threw the damn thing away ! I havenāt wet myself since, thatās been around 5 years ago.
I know a few ladies dealing with fistulas where none can be repaired, so it has a hugely negative impact on their lives. But they were treatment induced rather than caused by sex.
Itās a difficult subject to talk about in general, but if the doctor has said not to attempt sex, there will be a very real reason that it would be dangerous.
I only had dilators after radiotherapy with a view to ensuring everything was stretched enough to avoid closure and ensure you could still have internal examinations comfortably, so Iām wondering how they would help if thereās only a 2ā remaining? Iām wondering how sex could even be a possibility?
In my own case obviously I donāt have internal examinations as Iāve been sewn up inside and it would be impossible for anything ever to go up there!
Hi Lilypingu, When i first started with the dilator i donāt think i was so short, but it caused excruciating pain, it wasnāt like vaginal pain, more like gut and back pain.
I havenāt had any issues with internal examinations, but moved countrys, and got a new female oncologist doing my checkups, who was much more gentle and patient with me. Sheās the one who said no sex
I guess this will be a āwork in progressā, and donāt think Iām even going to contemplate good , old fashioned sex at this time .
(I hope you donāt mind me chipping in, particularly as Iām off the hook for surgical intervention for now - so really apologise if this is inappropriate for me to comment here.) But perhaps it would be good to ask for a second opinion - medicine moves forward all the time, and also ( hopefully) attitudes to older people both wanting or having a sex life ( Iām 65 by the way).
The other thing is, people in our age group often have to find other ways around not having penetrative sex because of the very common problems older men have - but most often donāt admit to - so you donāt have to shoulder all the responsibility yourself.
Hi Jen, Thanks for replying, i agree with the second opinion. Its time for me to schedual a check up and vault smear anyway, so will definitely ask. Iāve been doing some research on āouter sexā thereās some interesting concepts our there !! All is not hopeless !
