I am sitting tears today because nothing is helping my vagina after treatment. It still hurts to dilate or even on the rare ocassion I have sex, it hurts so much. My vaginal walls keep sticking together despite using my dilators everyday. I hate putting different creams and moisturisers in there, it's just so unnatural and my oncology doctors keep telling me there is nothing else to be done for it. I am so lost. I am just devastated still. Most days i just get on with it but today I am just so sad. I just wish that some doctor somewhere wanted to use their brain and get creative to help.
If it's not one thing it's another and I am so over it.
To other ladies out there, please don't be afraid for yourselves during treatment, I think my situation is not the most common.
I am so sorry that you are having such problems with uour vagina. I do know of some ladies here who had a vaginal reconstruction. Maybe this is worth looking into. I know that Petesdragon had this surgery, you might want to ask her about it
I did ask my surgeon about that but he said the problem is that my urethra is stuck like concrete to my vagina and if he cut the vagina out for reconstruction he would have to cut out my urethra. I am against a pelvic exteneration for myself and unfortuntely that is what would have to happen.
I had a lymp surgery a few weeks ago and they missed the lymph node with cancer and i asked about going back in to get it and was advised it would do more harm than good, so i think that means any surgery in the pelvic area at all.
So sorry to hear you are having a miserable time. It's so unfair after all we've been through. Have you tried the vaginal moisturizer 'Replens'. It comes with a type of syringe and really moisturises the tissues. It also lasts for at least 3 days so not a daily task. I used this early on after treatment and it definitely helped. Aside from this, the best moisturiser/lube I have found when using the dialators is optitube. I truly hope you find some relief soon.
Just to follow on from Izzzy's comment above about hyperbaric oxygen therapy; I've attended a couple of Pelvic Radiation Disease Association (PRDA) meetings in the past and have heard some members talk about this therapy. Maybe worth contacting the association to see if they can offer support/information/experiences about it. The website is: https://www.prda.org.uk/
Also the PRDA has a forum on the following website: https://healthunlocked.com/
I wish you all the best with this particularly difficult time you are going through.
Thanks you so much for your kind words. I think I read about the hyperbaric oxygen thing in passing but I will really look at it now. I am desperate for something to work.
I have a moisturiser called Regelle that I bought online but i also have some replens from my gp. So i will continue to use them all up and see how I go. Recently just had my eostrogen patches increased to 100 so that might potentially make some kind of difference, but it is difficult to be patient.
I bought the September issue of the magazine 'Top Sante' solely because it had an article about vaginal dryness - lol. The article is written by Dr Philippa Kaye who has published (Summersdale) a book 'The M word'. In the article she recommends 2 vaginal moisturisers: Regelle or Yes. There is also a section about topical oestrogen cream which is applied directly into the vagina - probably requires a GP appointment. Personally I use Optilube with dilators and Sylk for more general use - my vagina is a very slow work in progress as I'm mainly focussed on my bladder and lymphoedema. Regelle and topical oestrogen are on my list of things to try sometime.
When I finished treatment I was advised to use vaseline tampons for six weeks to prevent fibrose and or sticking of the tissue. I used just the small size tampons and dipped them in regular vaseline, a decent layer of it. I only had to use them at night. Maybe this is something you could try.
Also, what kind of dilators do you have? I found the ones provided by the hospital very unfriendly. I would recommend ordering a silicone vibrator or dilator set. They are softer to the touch and feel more comfortable.
Also, you could ask for an oestrogen creme to help thicken the vaginal tissue.
I am really sorry you are strugling. I remember really hating to use my dilators, those first months I wanted no business in or around my vagina but please don't give up on it.
I changed from the hard plastic dilators, provided by the hospital, to a silicone vibrator. As Izzzy says it makes for a more comfortable experience. I've heard that the plastic dilators might do a better job of breaking down adhesions but if it gets to the point where one is avoiding them because it's a dreaded chore then a silicone alternative may be a good compromise - maybe check with your medical team. I ordered my vibrator from Jo Divine: https://www.jodivine.com/?gclid=EAIaIQobChMIhL_Pnpv97AIVgrTtCh20JgiBEAAYASAAEgLQB_D_BwE
If nothing else I can recommend looking round the Jo Divine website because there is some good information about sexual health/pleasure. I've had a couple of chats with the lady who heads the company - I believe she used to be a nurse and she is very knowledgable and passionate about helping to resolve sexual issues.
The Regelle is actually a lot tidier than the replens, so i would recommend it based on that for sure. Though i would use it at night anyway.
The tampon with the vaseline sounds like it might be useful. I would however not use a tampon, even cardboard applicators for certain creams hurt me internally. But i am pretty sure you can get little bullet things that sit inside with a string of the same material hanging out. Probably more geared toward kegal muscles but if it works then it works.
I have several different types of dilators. I got the nhs ones, which i don't use anymore, and i have some silicone ones I bought from StressNoMore (they've now been discontinued). More recently i bought some magnetic ones to see if they do what they claim, and no, they don't, they've made no difference but they still feel better than the nhs ones.
I emailed my gynae nurse about the hyperbaric oxygen therapy and vitamin E as well. So I am waiting on them to get back to me.
I will also take a look at the Jo Divine link. Thank you. I am really grateful for all the suggestions.
Ah I am so sorry to hear of the aftermath issues you are experiencing. It is so difficult to deal with our changed vaginas. Something we have identified with our whole lives is no longer what it used to be.
I second the internal estrogen cream. I get a prescription from my GP - and when I use it I find a bit more of an improvement.
Let us know how you get on, and if things are improving or not improving. xx
