Vulva Specialist Given Up!

As some of you know I've been seeing a Vulval Specialist who is also a Vulval Dermatologist and I've been back today for an update, my medications aren't working well despite being on nearly the full dose of Lyrica and 50 mg of Ami and she's admitted she doesn't think she can help me anymore. Apparently if meds are going to help they normally do so at much lower doses than I'm on and if they don't help she refers people elsewhere. Because I have a joint condition that affects pelvic stability she has decided to send me on to a gynae who has a team of vulval specialist physios working with him. Unfortunately it means I have to travel alot further which will require me to get a lift from someone (don't know who I can talk into that!) and I still have my appointment next week with a WH physio who is a bit closer to home so I'm feeling good in one sense that I'm going to get more help but terrified at the same time that I'm going to prove beyond anyone's scope because of my other problems. I told her I didn't think meds would help me but wanted to give them a try and she basically said she'd never seen a case as severe as mine that was also so resistant to medication which is scary. Fingers crossed someone out there can help me and I'll update when I get my appointment. Feeling a bit scared right now!

I'm so sorry Sarah I've had so many doctors just misdiagnose me or say they don't know what I could have and give up, so it's at least a positive thing that you have been able to find some actual specialists.

I was thinking that perhaps medicine may not be the way to go for your body, and that you should look into some possible natural cures along with physiotherapy? I am currently looking into the raw food diet (a little harsh i know) and the yeast diet. It may have to do with your body's acid levels or your reactions to different foods. I'm actually going to try getting a food allergy test to see if I am allergic to yeast or anything else. I don't know if you have already considered these things.

Please don't give up; we shouldn't have to live like this or put up with it at all

I'm so sorry Sarah, that must have been such a blow to hear. Do not give up though. Just because this one person doesn't know how else to help you, doesn't mean there isn't anyone who can. I know this may not be a helpful suggestion, but have you tried acupuncture? I haven't yet ztried it but at my last gyn appointment she suggested it as an option. She told me that apparently there are many women who have been completely cured by acupuncture. I know it seems like an impossibility, but it's worth looking into I think. Wishing you all the best.

you know- i think diet elimination is KEY
I tried the yeast diet for a year- did nothing for me

so im starting to think- this isnt yeast related, its pH related. I think the raw food diet makes sense... but its hard- start out slow and do it in baby steps

I came out of the appointment thinking at least I'm being referred on but on the way home started to worry about what if the next person can't help me either? Pain meds were supposed to be a last resort for me that I got talked into trying earlier because of the amount of pain I'm in so it's like I've had the rug pulled out from under me. Some of you members who've been here a while will already know about my other complications and diet isn't going to give me new ligaments so diet just isn't the answer for someone like me, I've already done the low ox diet with no help and the anti inflammation diet too which works on the principle of removing acid from the body and that didn't help either. Mine's definitely musculoskeletal and revolves around the pelvic problems I've had for many years and obviously an unstable pelvis along with a pelvic floor hanging on for dear life is going to be difficult if not impossible to rectify because treatment for one makes the other worse. I'm literally pinning all my hopes on the new physio I'm seeing next week (snow permitting) which means if she sends me on my way I'm going to be devastated. I'm sure my resting tone is up again because I've had the worst year of my life and so much stress I'm surprised I'm still ploughing on every day. It's a very worrying time and I can feel depression lurking over me.

sod that sarah! theres no way we can give up now...we've come too far!!

I know its a blow when they pass you on to a new specialist. I think after my 10th I was thinking "shite!" but if I dont keep plodding onto the next then theres just no point in fight it and trying to get better.

have u spoken to alana (not sure what alanas nickname is on here, or if she is still on here re: ketamine. she uses this orally (i think) and has given her so many more days of less pain. She said its not the answer but is helping so much with pain relief.

hope ur ok chick! xxxxxx

I'm crossing everything the new physio I see next week will be good, she's had some rave reviews from various people I know but none of them had V so we'll see. Nervous...