Vaginal pain due to vaginitis, post radiotherapy treatment

Posted , 7 users are following.

Hello lovely ladies, just found this forum and it has given me some hope at last. After treatment for cancer 30 years ago where the radiotherapy both internal and external left me damaged, I have had constant pain!

Celibate these past 18 years and now aged 61 the most painful thing is still the vaginal dryness, itching, pain and due to the adhesions I am effectively sealed shut. Smear tests have been impossible for 10 years as both sides of my vag are sealed shut with adhesions leaving the smallest area still free.

My doctor is ineffective and relies on me to tell him what I need.

cannot take any oestrogen type meds due to previous cancer so have been using creams, pessaries, aromatherapy oils in douches plus organic yoghurt etc.

'Yes' gel did nothing for me, Canestan was used as a last resort type thing (I know it is not thrush) but pain makes one desperate as I am sure you will all agree.

I paid thousands seeing private gynaes none of whom could help as internal exams are impossible.  None had suggestions as to what I could do and nothing I try gives a lasting solution. 

No cystitis pain, no discharge just extreme pain and soreness. Having gone through the menopause age 30 and not having HRT either my vag area is dry, atrophied and dying it appears.

sorry my first post is a long one, happy to support anyone needing it and to be here amongst sisters.

3 likes, 14 replies

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14 Replies

  • Posted

    Hi Chix 

    bless you hun, you sound like you have some severe pain, and i hope you find something that helps you..

    have you tried or are you able to try premeno duo ovules .. Vaginal moisturiser ovules.

    just a thought, they are not hormonal, but they are good, i tried many and this was the best yet for me,

    jay x

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    • Posted

      thanks for that jayneejay. I will give them another try, forgot over the years all the things I have used, difficulty getting past the adhesions to insert anything anymore. Pain is really wearing me down after 30 plus years of examinations, incontinence and pain.

      works out very expensive. Appreciate your reply

      chix x

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  • Posted

    Sorry to hear of your situation. Sounds very painful. Have had no experience with radiation, but one would think doctors would. You can't be the only patient to have had it with these results. I have had friends who have suffered with internal adhesions after abdominal surgery. I believe the solution was to go back in and cut the adhesions with the hope new ones would not form. Was this ever suggested?

    I am a little older than you and have naturally occuring atrophy. No painful symptoms, but exams becoming impossible (as would sex). Sad that you have had to be celibate all this time. Were you given dilators and creams after the radiation in an attempt to prevent adhesions?

    Found this on internet in response to someone asking about dilators & anaesthetic:

    "My doctor had given me a jelly type of anesthetic (?sp) to use when I used the dilator. It took the sting out of using the dilator. I think the bleeding is just the scar tissue breaking up. I had my surgery in 1999 and still have bleeding sometimes. I don't think he actually called it surgery. The doctor had put me under general anesthesia to break up the scar tissue. You might ask about the jelly to make it a little more comfortable. "

    Is this a possibility or at all helpful?

    Best of luck.

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    • Posted

      Yep was given the dilators, different sizes etc. adhesions started much higher up near the stomach and just crept down. Last surgeon I saw said the adhesions are so strong and thick banded she would not attempt surgery without a 6 person team with her. With the nhs in such a poor state my problems are not classed as urgent. Incontinence and pain are really getting me down after so long, it costs a fortune for Tena, creams, gels etc. Pessaries cannot be inserted too sealed. At the time I had my radiotherapy they were not as advanced as now, I was overdosed but worse was told my side effects were not usual and I was the only one. I later found the ladies of RAGE who had all suffered the same and we're looking for answers and help. Sadly lots of them are no longer with us, so I am a luckier one. So many foods I cannot eat and stay by the toilet 24/7. Too many accidents in the past......

      nice to have found this forum

      chix

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  • Posted

    You Poor thing, you have all my sympathy. AV is traumatic anf

    d you have all the other stuff as well.

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  • Posted

    Hi Chix, have no advice really sbnut wnated to say i really feel for you, and i think i have problems with vag dryness and painfull sex, goes to show there is always some one worse than us. i do have internal paion due to to many procedures and ops in the past but in my womb and bladder area, just told its adhesions causing my problems, some time si feel as thouigh my bladder and womb or womb or bladders and bowls are stuck together to a sits worse after laying down all night  like something is pulling on something that shouldnt be. i was given vagifem for the atrophied and dying but had to stop due to bleeding, poor you you cnat even use anything at all. hope someone can come up with some help youi so mjuch need. 30 is very young to have experienced the menapause as well. No women should have to suffer like you.
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    • Posted

      Thanks for that Susan. It does seem a lonely road. Kind of used to it now after 30 plus years, trouble is it wears you down to a shell. My last successful exam in 1991 showed my organs wer glued together by adhesions and it got worse from there.

      You sound as if you are having a bad time too, you too have my sympathy and I feel for you. I know what the pain and just the sheer never ending grind of it all does to your happiness.

      so many 'so called' cures, answers....but none work for long if at all.

      take care babe

      chix x

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  • Posted

    I'm sorry chix I made this comment below to someone else, it was meant for you. I've been thinking about you today and wondering if you need more confidence to demand better solutions from the Gyne doctors? I expect they haven't had to deal with the issues you have before, it's a new condition for someone to have suffered what you have so young and to be still living with an ongoing impossible condition. I've been thinking, for myself, if this got very bad I'd demand to have it cut out. They're very happy to cut out wombs and ovaries when they're past they're sell by date, why not a vagina that's crippling you daily? It's a well known fact that they only respond to demand, otherwise they leave us to get on with it. No body can feel or understand what you are putting up with and you shouldn't have to. Don't know if you can do pelvic floor exercises but they're helping me.  
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  • Posted

    This may be a ridiculous question, but don't they create vaginas for men who have sex change operations? Haven't the slightest idea how they "make" one, but could that possibly be done for you? I read that the vagina can be removed and recontructed in cases of vaginal cancer. Has any doctor suggested that to you? Maybe you should ask specifically about this.

    Are there women in the RAGE group (not sure what that is) who have undergone the radiation you have who have the same problems and if so are there any  treatment suggestions from them?

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  • Posted

    Hi. I have just been prescribed Hydromol by a dermatologist. It is actually for frictional dermatitis which means that I have been getting very very sore around the anus and vaginal areas, and you can use it instead of soap in the shower as you get a lather from it although it looks like vaseline in the tub. You can also apply it liberally around the genitals and she said it could be used as a lubriuicant instead of KY or something like that. I have only just got it today, but think it is giving me a oit of relief as my skin does not feel as tight when I siit down. I have VA also but not too bad she said and to use dilators. Hope this helps a bit, Oh and you can use it in the bath.
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    • Posted

      Hi carmarie

      Thats interesting, hope it helps you.

      Is yours the Hydromol Ointment in a pot.

      You can buy this without prescription aswell.

      Theres also Hydromol for the bath in liquid form too.

      Let us know how you get on, may get some 😃

      Jay x

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    • Posted

      Hi that sounds interesting please let us know how you get on. They gave me aqueous cream to wash with from the consultant .

      Can't say it stops the itching etc!

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