My journey - believe it or not it's a fairly positive one!

Hi Girls,

I'm new here (but not to V)! I've been reading this forum on and off for the past few years and it's helped me greatly. It's taken me this long to actually join up - selfishly, I've never wanted to participate as it felt (in a weird way) like I was giving in to the condition. It finally dawned on me that my story might actually help some of you guys - so here I am.

My journey with V is fairly straight forward and began in Sept '11 no real obvious trigger, typical nerve pains, run around from GP for 3 months until (I think I read somewhere on here) about Wendy Reid and coughed up the money to see her privately. I should mention here that I was in a fairly new r/ship at the time and sex wasn't an issue at all. I could and still can have completely pain free sex. She diagnosed me with unprovoked vulvodynia and put me straight onto Lyrica which was great. Worked pretty quickly to dull the pain. I was on it for 4 months when I decided to come off it and I was left only with some minor pain on one side which was mostly radiating through my thigh. Wendy sent me off for PT for this. Whilst waiting for the PT and weaning off the Lyrica (by this point I was mostly pain free but not 100% although the pain wasn't bothering me too much) I decided to see a McTimoney chiropractor in Worthing (she's also been mentioned on here) for the McTimoney pilot study. She was brilliant. Within month or so of seeing her I was 100% pain free. It's hard for me to say if it was the chiro or the lyrica but I'm fairly certain it was the combination of both these things - at the right time - that lead to this remission. I don't think one would have worked without the other. In total I was "in treatment" for 6 months.

I went 10 months 100% pain free and medication free with no sign of it returning. In April '13 it came back in a mild form (mostly the one sided thigh pain) and I booked 3 sessions with the chiro and it was gone again. This episode lasted only about 3 weeks.

In Sept '13 it came back again but this time the chiro sessions haven't quite been as helpful as they were in April. There are certainly symptoms that she can resolve - the one sided ones for sure. This time I'm experiencing an all over prickling sensation - more or less constant - over my pubic hair area that is stubborn and doesn't want to go! After 3 months of trying to get rid of it without medication I went back to Wendy Reid and this time I'm trying amitriptyline instead of the Lyrica. I know most of you probably think I'm mad as Lyrica is hailed as the wonder drug for vulval pain but I was on it for 4 months and gained 10kgs in the first two. It was petty hellish! I really wanted to try something different this time as the V was one thing, but the weight gain was equally as taxing on my mental health and wellbeing. I know a few of you mentioned you wanted to try Lyrica but just be careful. I know not everyone experiences the same side effects from meds but I really wish someone had told me about the weight gain before I went on it. Wendy said to me that whilst they work quite differently on the nerves, the end result is usually the same (it's just that ami takes longer to work).

So far the ami has been ok. I've only been on it 5 weeks and am up to 50mgs at night. I'm not 100% but I think it's starting to kick in. Its hard to tell tho as I'm so up and down I'll have a few good days and then a bad one but I think overall it is getting better. From memory - this is what happened last time. So far not too many rough side effects. If ami turns out to be useless then I'll bite the bullet and go back on the Lyrica but for now I'd rather wait and see.

Basically, I want you girls to know you can and will find a way to treat this. I've done it once and I'll do it again. It's just a matter of finding the exact right combination of treatments. There are things that I have suspicions trigger this but I can't be 100% sure. Just like its probably going to be a combination of treatments there's probably a combination of causes too that make something like this too hard for our bodies to bounce back from. Autoimmune or whatever else. It's so easy to get caught up reading negative stories on the internet but I see mine as one of the good ones. Obviously the fact that it's come back isn't IDEAL but the fact that I've resolved it once is proof that it can be treated and you can be pain free (and that finding a good team of dr's, gynae's, physios, naturopaths, osteopaths, chiros etc is the key to getting there).

London girls - I live in London too and would love to meet up sometime before the October meet.

Sorry this was ridiculously long but I wanted to try and include everything in case there were bits that might help some of you.

Any questions on the specialists I've seen/mentioned don't hesitate to ask.

Xx G

Georgia, you are more than welcome to come to our support group meeting! the next one is on the 22 of March at St Cyprian's church

https://sites.google.com/site/londonvpsg/meetings

the girls are lovely and after the meeting we usually head for tea/lunch in the marylebone area.

Thank you for sharing your story, and reminding us that their is hope and a light at the end of this tunnel.

Hi Georgia,

Thanks for coming on and sharing your story! I took a while to actually sign up too because it felt like effort to write about my story from the very beginning , but now I can't shut up ! lol. And it also felt like I was admitting there was a real problem, with a real name, whereas before i'd almost been in denial and just getting on with life. But it has got to the point now where I can't push it to the background anymore. The pain is very much there, and if anything it's more nagging than ever before. I am feeling pretty confident that it's going to go away, with the right help and understanding. I'm in a way, excited.

Currently on amitryptline only 20mg atm (one in morning and one at night - no change as yet but it's only been 2 weeks). That's interesting about the lyrica! I hope ami doesn't make me gain too much as i've already been comfort eating A LOT!!

T x

Hello Georgia! Thanks for sharing your story! How are you feeling now?