Trying something different

Hi,

I'm also a newbie to this forum! And glad to have found it. I need some spirit lifting I've had Vulvadynia nearly 3 years and am so determined that it won't become 4. To be honest, I think I have this condition milder than many of the women on here. It used to be so much worse for me, but I do think I'm getting somewhere with it. The hardest part for me is the difficulty to have sex with my fiance. I love him like mad and it's so tough not being able to express that in every way...and knowing how good it was before I got this!

I see a specialist fairly regularly rather than a doctor. I was originally going to the doctor for reoccurant thrush and I'm so glad she realised whatever I had was outside of her knowledge and referred me on. I'm lucky because here in NZ my treatment, through the sexual health clinic, is heavily subsidised by the government. I feel really lucky because as I understand it that's not the case for ever country. My specialist is excellent and I have full faith in her. I've been on Nortryptoline almost from the begining but my dosage has dropped now. I used to wonder if if it was doing anything, but looking back at how painful it used to be and how it's not as bad as that now, I realise that it must be doing something!

I also see a physio and am happy with how that's going. She's taught me a number of exercises to help relax the pelvic area and my muscles. She's also got me doing vibrator work and a diaphram that I'm slowely moving up in size with. It all felt a bit awkward at first, but I'm determined to see change so I got over that.

My next step will be going to see a psycologist. I think both myself and my fiance should go, because this isn't only a physical thing and this doesn't only affect me. Our minds play such a big part on our health and having V can create a lot of frustration, sadness and the rest, as you all know, and I think it'd help to talk to someone professional about it. So it can't make things worse and I'm willing to pay what it takes (hopefully it's not too much haha) to get into a better head space. Because although I know things are improving it's such a slow process and it gets me down... My fiance is really supportive and happy to come with me. He wants me feeling better as much as I do.

My gosh, sorry, this is a novel. It's just so good to be able to talk to people in a similar position as I am. Sometimes I feel so alone in my plight!

Hello and welcome !

Kia ora Mel!

I'm also in NZ. I'm glad you have found an amazing specialist. It seems to be luck of the draw in this world. I have one in Auckland who is pretty fab. Although I'm also taking this thing by the scruff of the neck. I've taken responsibility for my healing and have attacked it from all sides.

A psychologist is a great step to take. I see a sex therapist, she has several clients with this shizzer specific knowledge really helps. This thing really does your head in so unloading all the crap is essential. It's great that your partner is so supportive and willing to participate. I didn't take my hubby initially and now it's become my therapy really. You may be able to get funded therapy through your GP?

I do physio as well, no drugs though I couldn't make those work for me. My pelvic floor locks up sometimes, strange how tension shows up there. I meditate and have made significant dietary changes. I try to do anything that gives me endorphins. Yes smiling and even laughing do that! Singing is even better. I love singing but it's usually restricted to "home alone", in the car or when I'm bladdered

We are all different so don't get caught up with comparisons. Any version of this is absolute crap. Silent illnesses and particularly ones that affect our lives so greatly are bloody unfair. It sounds like you are being really proactive in your recovery, that's fabulous!

Take care and be gentle with yourself.
V. grrrr it pisses me off that the signature I've used for decades is now the symbol of evil!!!

Thanks Mouse. Great to hear all of that. Yeah I'm in Hamilton and yes I'll inquire at my GP about therapy funding, I hadn't thought of that! Yeah I think something that annoys me the most is that each of us are such different cases and there is no such thing as one size fits all! Not only do I want to get through this, I want every woman out there suffering to get through it...and it frustrates me no end that everything is such trial and error...

What kind of diatry changes have you mde? I've read so many theories...and I don't want to drastically change my diet if it's not worth it...but I'm making a real effort to reduce yeast, acid and sugar intake. Which really sucks as I enjoy beer, wine and baking! But rather than eliminating completly I'm just doing as much as I can to replace it with something else when it suits. I'm not much of a drinker anyway so I tell myself that that helps...who knows though!

I've picked up my exercise (also to increase the happy endorphines) and have been doing yoga to help with relaxation and flexability. I was doing a bit of belly dancing for a while too and that's supposed to help with muscle tention in that area and learning to control muscles separately so I try to keep those moves up too when I'm doing mundain things like the dishes

Trying to tackle it all "holistically"

Mel it sounds like you are doing some great work! It makes sense to me to look at everything you put in and do to your body.

I'm gluten free but that's because I'm lucky enough to have an auto immune disease. I'm now sugar free also which was quite an adjustment! It really works for me though. I think that if burning pain is an issure reducing acid foods is worth a shot. I hit the chocolate hard at Easter and had a major relapse, it was also period time so everything went wonky.

I'm really keen to start pilates. I used to do yoga and really enjoyed that.

We are on FB if you want to join. It's a private group, just email sebby and she will hook you up

Vicki,

Not sure if pilates is such a good idea. I always used to do it before v and my specialist said that it is a bad bad idea for people with v as we have a hard enough time relaxing the pelvic floor. Alot of the moves in pilates increases ab tension and when you tense your abs you kind of cant help doing your pelvic floor... my tummy's gone to pot since i stopped pilates....so occasionaly I do a work out, and boy does my v flare the next day...it is not worth it, trust me.

Mel,

your approach sounds similar to mine and Vicki's I wish Aus medicare would help out with the costs of physio, your lucky over there. I get 5 sessions subsidised a year....I have used them all in 5 weeks. I have never heared of such a costly condition, even mum with all her medical things pays less than me a month for drugs/physio/massage etc. Keep going with it, it works! I too have come so far with the help of physio. Sex is now pain free almost all the time, mayabe a little burn afterwards but mostly great...I just can't go too wild (haha). So you will get there. My problem is I still have pain wearing jeans and even when I am wearning nothing, but sex, is pain free...in fact it is the only time other than sleeping I do not feel pain, go figure?!

Claire

Thanks hon, I was going to ask my physio first. There are some pilates instructors who work alongside physios. My pelvic floor locks up as it is. Hey I'm probably too lazy anyway!