Alone, overwhelmed and with no one to talk to!

...where to begin?! It started 3 years ago and I've seen 6 gynos. I was diagnosed just this year. I've felt broken and alone for so long. I've never met anyone with this problem and no one I know understands. My relationships fell apart bc of this. The lidocaine isn't working and I'm afraid to try anti depressants. I don't want to have to go through trial and error. What if I never find the thing that helps me? What if what will help me, screws up the rest of me? I don't think I can afford a therapist but I really need someone to talk to who knows about this..dysfunction? I don't even know what to classify it as. I feel like I'm not allowed to date bc who would want to date someone you can't really have sex with? Is that a normal train of thought? I want to date, but am so closed off now that I don't know where to even begin. I need help, but don't know where to go or what to try next.

Everything you said was normal. I refused to go antidepressants but my doc was able to make me a topical compound with the antidepressant a nerve medicine and lidocaine in it. Unfortunately it failed after a few weeks and he told me my next option was surgery which im actually getting Wednesday. I tried physical therapy which helped immensely but the pain was still there but I was able to have sex at one point so that was good! Unfortunately it is trial and error and I was getting sick of it so my doc recommended the surgery for me. Where do you live? Oh and you can't think that the treatment.will mess you up it might but you can always try something else on the other.hand it may be amazing

So sorry to hear your struggle. It is such a horrible thing to have and my thoughts are with you.

But don't give up! There is hope, have a look at what helped me and I am now basically painless

http://www.vulvodyniasupportforum.com/t1084-what-worked-for-me#6714

Also, with taking amitriptyline, I was really worried before taking them 'I don't need anti depressents' and 'what if they screw up my brain' but I have now been on them for 2 years and my brain is fine! The reality is, is that for the painkilling aspect in the amitrip works at a much lower dosage, and people that take them for mental reasons take much more than we would for our vulvodynia. Also I am now on a very low dose, which does just fine and I know myself and my brain has honestly not been affected by taking it. However, I understand your concerns and not everyone gets on with it OK, but I think it may be worth a try, seriously.

And also try the dialators!!!! I cannot emphasise how much they helped me.

All the best,

Kate

Hi San13 - we can empathise with you here and its a good place to ask your questions and get some help and advice.

I understand about you not wanting to do trial and error but I think thats essentially how it has to work for us vvd sufferers due to the lack of consolidated knowledge in the medical field. But you can take control of it to some degree. What i found helpful was to decide in my own mind which treatments i was going to try first and have a sort of plan (I found that thinking of it as a plan rather than trial and error did make a difference to how i felt about it). I did lots of research (probably too much, got a bit panicky at the varied info i came across) - a good way to manage that bit might be to look on here for treatments that have worked for people (there's a Success folder on the forum) and plan your approach. Hopefully you now have a good gyno so they should also be able to advise. It sounds like you've only tried lidocaine so far? but there are lots of other things to try.

Also, the type of vvd can influence choice of treatments e.g. vestiblodynia can respond well to treatment with dilators. Like you I didnt want to do the antidepressants so they were my last resort and thankfully I went down the physical therapy route first and sorting out my pelvic alignment and tight, twisted pelvic muscles has almost eradicated my vvd. Everyone's different so keep going till you find something that works for you.

Finally having vvd doesn't mean that you can't have sex and sex can be a whole lotta things not just penetration so dont write your sex life off. Its easy for me to say but try not to put yourself under pressure when it comes to sex. If you can focus your energy initially on finding a treatment that helps you'll hopefully be in a better physical and mental place to consider sex.

Btw - I call vvd a 'condition'. Its not a negative term and in my mind 'condition' also means its changeable which means it can improve or get better!