Hello all.
Thanks for your comments. I think perhaps I need to explain a bit more about my situation as is not run of the mill. When I was 45 (i.e. prime years of hormone weird shit) I developed some night sweats, low mood and vaginal atrophy symptoms but at the same time some nerve pain symptoms that I guess you could call 'vulvodynia'. This first took the form of after I had an orgasm (or even just sexual thoughts without actual orgasm) I would have pain / aching / unpleasant feeling in that area that could last for days. Really nasty. A few months later it also changed to include a similar type of feeling after I had a shower and would last until midday-ish and then fade. I do all the usual things of not using soap etc and I don't have lichen sclerosis or similar as have been checked by a vulval dermatologist who I would trust.
Since then I have got HRT (estrogel). This is estrogen only since I have had a hysterectomy (kept ovaries). I feel I have the right level of estrogen as it deals with the night sweats, low mood etc but if I take more than the current level I get migraines and sore boobs. So that's all well and good. For the vaginal atrophy, it is somewhat under control with topical estrogen aided by vaginal moisturisers.
However, I have been taking the above HRT regime for more than a year and the nerve pain symptoms persist. I have seen various people and I have been given amitrityline, nortriptylene and gabapentin which did nothing for the pain and gave me nasty side effects. The latest thing is they want me to try duloxetine which also has nasty side effects and if you want to stop taking it a prolonged withdrawal period. I'm not keen on doing this either.
I have also been seeing a pelvic physio. She is good and it might be helping but I don't feel like it will be the solution on its own. I know the pelvic floor muscles can get all crunched up and cause pain but indications are that this is not the case for me.
I have done some research and there are a few indications in the scientific literature that low testosterone can have a bearing on vulvodynia and given the sexual pain link I do wonder if that is the case for me. By the way I am a scientist in a field allied to healthcare so I'm well able to read and interpret the scientific stuff.
I would like to have my testosterone levels tested to see if this might be a cause but I can just predict that I will be dismissed by the gynae I see. Therefore I think I'll have to do it myself. This is the reason for my original question!
I feel like as my problems are not usual there is not a convenient 'box' to put me in. The NHS doesn't seem to have a 'other' box that means that things are actually thought about and investigated. They just fob me off with whatever thing that is the nearest fit but is still not right. It seems to me that the onset of this problem with prime perimenopause years means that a hormonal cause is a good thing to investigate. As estrogen does not seem to have helped then I would like to see if testosterone might be the cause (or at least rule it out). Therefore if anyone does have any recommendations for easy to access testing in London I'd love to hear about it.
Also, if anyone else has experienced similar symptoms I'd be fascinated to hear.
If you've got to the end of this well done!
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