Vaginal reconstruction

[Mumandwife]

Hi, sorry if this sounds like a ridiculous question but is anyone aware about options for reconstruction of vagina? I have all sorts of effects following treatment for cc in 2012 and am really struggling with intimacy. Have tried dilatory , vibators, gels creams, pessaries but nothing helps. I want to feel normal it's having an impact on my mental heth and my marriage. Just don't know what to do. Also suffer badly with diarrhoea etc which doesn't help intimacy. Just so tired of worrying about all this stuff with little understanding from health professionals about the impact . Could surgery help?

[NJ85]

I have the same issues but haven’t taken any action . However on the bowel front I have been diagnosed with bile acid malabsorption. It seems to be common. Mention this to

Your team. There is medication which can help

[Mumandwife in reply to NJ85]

Thank you. Reconstruction maybe is wrong word but I just wonder if anything can be done. Yep I was diagnosed with BAM and lactose intolerance in 2016

[HarleyQuinn82 Community Pioneer]

I’m so sorry your going through this! I’ve asked the same question to my gynaeoncologist and didn’t really get an answer.

I have had this conversation a lot, people who have breast or testicular cancer get offered reconstruction, people who’ve lost a limb get offered a prosthesis.It feels like because it’s gynae cancer and therefore internal not aesthetic it’s not an issue to have a part of the body that doesn’t function.

Definitely an under discussed/supported issue though there are people like Isobel white and Liz O’Riordan who try to break down the barriers to discussing sexual dysfunction.

Sorry I can’t help and can only empathise. Sending you lots of love xxx

[Mumandwife in reply to HarleyQuinn82]

Thank you for taking the time to respond. You have articulated the issue so well and I suppose I never thought of it like that before. I am definitely going through a low point at the moment in terms of body image and identity and feeling mad that I survived the cancer but it still had this massive hold on me. Then I feel guilt for feeling that way when so many don't survive. Complex isn't it. So glad there are some amazing people in the medical profession and beyond pushing this issue though.

[HarleyQuinn82 Community Pioneer in reply to Mumandwife]

If you don’t mind me asking, have you been offered any counselling? It hasn’t fixed my issues but it did help me start working on some of the guilt issues. Survivors guilt and living with grief related to all the losses we experience is another aspect of living with and beyond cancer that isn’t discussed enough xxx

[Mumandwife in reply to HarleyQuinn82]

I had a few sessions a number of years ago. I'm OK most of the time and people would never know what is on my mind. I'm the one who listens to everyone else's problems if you get what I mean. Just having a low couple of days. Love our NHS and owe them so much but just tired of being told, "oh it's just radiation damage " everytime I am investigated for any strange or new symptoms. I'm st a point where I'm considering going private or at least looking in to it. Co Vodafone helps with pain and controlling diarrhoea and I have coveselam but some days with my bowel are just horrendous and nothing helps. Apparently there is a section of my bowel which has been described as woody whatever that means! Thank you for listening x

[HarleyQuinn82 Community Pioneer in reply to Mumandwife]

I think we become very good at hiding the real us from people for fear of judgement, pity, apathy etc. This is why this site is great as people often open up more on here than to people close to them as on here people get it, even if we can’t help we will always listen ❤️

[Mumandwife in reply to HarleyQuinn82]

Love predictive text changed co codamol to co Vodafone though 🤣

[Blue_Hawaii in reply to HarleyQuinn82]

My guilt is I lost 2 young nieces 1 at 13 & 29

[Ladyparts]

I'm sorry to hear this. I've heard people talk about Mona Lisa touch before - have you looked in to this? thepelviccenter.com/contrai...

[Mumandwife]

No I've not heard of this. I will have a good look. Thank you so much x

[Perido]

Have you seen a menopause specialist? From what I've read Dr Newson is highly regarded: menopausedoctor.co.uk/

Also there is a book called 'Me and My Menopausal Vagina' by Jane Lewis which includes a section where the author describes her (generally positive) experience with vaginal laser treatment : amazon.co.uk/ME-MY-MENOPAUS...

[Mumandwife in reply to Perido]

Thank you so much, I'm interested to explore all avenues for vagina and bowel. Even if I can ease one problem it would be a massive boost for me. Thanks again x

[Skellige Community Pioneer]

Hi thereI haven’t had reconstruction but I was offered it by St Thomas’s in 2013. I had endometrial cancer in 2012, and like you developed real problems. I also have a long episiotomy scar from a botched cut during delivery, which was adding to the problem. I decided in the end not to follow up on the surgery - to be honest I’d had enough rummaging about my perineum and could not face any more interference, but they were willing to go ahead. I think if you feel you could consider it, it’s worth pushing for advice to give you some choices. Since I’ve found other options for intimacy and I no longer miss ‘traditional’ options, but I really do remember how miserable it made me for quite some time.

I’m sure there will be others who can advise in more detail, but I wish you all the best and hope you can get through to the right people. The team at PRDA are brilliant at finding help, and if you feel up for it there’s a weekly chat on Wednesday night where these types of issues can be discussed.

[Mumandwife]

Aww thank you so much for your lovely response really has reassured me. Will def give the Wednesday chat some thought I think 🤔