Just joined - lots of questions - let's beat this thing!

Hello everyone, I just thought I would write a few lines to say hello, I have just jumped in and started firing questions at you all which seems a bit rude. I thought I should say hello and introduce myself.

I'm 35 and have had this pain for about 10 years - ever since a run of urinary and vaginal infections way back when I was travelling in Bankok.

I finally got a diagnoses last year of vestabulodynia - provoked vulvodynia from a dermatologist in Cambridge. I was so elated, she said just take this amatryptaline, once a day at night for a few months, and put on some topical fucibet cream and your nerves will get re-programmed and you will feel better. Hooray! I was so excited.

However, almost a year later I am still here, hurting and feeling pretty cheesed off i can tell you. I didn't get on with the amatryp at all - made me feel like a zombie on only 5mg per day! I just couldn't function at all, and I am not sure I understand how it is treating the problem, it just seems like a bandaid for the symptoms.

I am desperately keen to find a cure! Not just a way of coping, but a real live cure! Do you think that is possible?

Having searched obsessively on the net these past few months I am currently convinced that vulvodynia is caused by several different things:

hormone imbalance - prob pill caused
tight muscles - from some trauma or other or even just infections etc...
too many nerve endings
leaky gut leading to oxilates getting into the bloodstream ? (not convinced on this one though)
pelvic misalignment - needing fixed by chiropractice

Any more ideas - feel free to lob them in!

I am currently trying out the physio route, having ordered a book by Amy Stein called - heal pelvic pain - which recommends exercise and massage to cure the problem. Ive been doing it for a couple of weeks but I think I really need to see a proper physio to see if that is my problem. and make sure I am doing it right. I am so squeemish about the internal massage I can't begin to tell you!

am also randomly taking some supps b vitamins and calcium...

I feel a bit all over the place, lurching from one possible answer to the next... it's all a bit depressing really isn't it?

I have started meditating to try and help me come to terms with this thing and stop freaking out!

I also have coeliac disease and a very sensitive tummy - possibly ibs or some such other joy! I hear that gut issues and vulvodynia are often related.

I have a very understanding hubby, who is supportive all the time I am actively fighting this thing and trying to find a cure. It drove him nuts over the first 8 years or so of burying my head in the sand and bouncing from doc to doc trying to find what was wrong.

Although I sometimes think all the research and the obsessing about it is making me more aware of the pain and making it worse...

I am so happy to have found you guys though to help with ideas and keep me strong and motivated. I hope I can help with suggestions and ideas too.

Oh dear, this is rather more than a few lines now isn't it... I will leave it at that for now... I could go on for pages! I'm thinking of writing a blog... my road to recovery? And chart all the things I am trying... but again, is that getting a bit obsessive?

Anyway - nice to meet you all, hope to hear from more of you soon!

Blue Kangeroo (anne)

Hi Anne and welcome!

I think your summary of possible causes is the same conclusion I came to. I'm focussing on the physio/chiropractice route at the mo too - have got Amy Steins book and finding it very useful. My pain has certainly diminished and I think its related to the exercises. I say this even though a biofeedback assessent of my pelvic floor came out broadly as 'normal' - i'm not convinced it isn't still the problem somehow especially as the exercises seemed to have helped (I was having a relatively good day when I had my assessment). I have provoked vulvodynia rather than vestibulodynia so haven't been doing the internal massages as I don't think I need them (maybe I should).

LIke you i'm focussing on finding a cure not just relief - though I think finding relief (even temporary) is important for our sanity! But I know what you mean about getting obsessive and 'lurching about' - I keep a vvd diary where I record my pain levels, outline of what i'm eating, vitamns i'm taking, periods etc and i've started to plot this onto an excel graph (needs a bit more concentrated effort - i keep putting it off!) to try and find any patterns. It can take over but I'm getting better at coping and doing 'normal' things when I can (i've had vvd for 6 months) I see the diary as part of my strategy for overcoming vvd so I try to put a positive slant on my 'obsession'

Anyway i'm sure you will get lots of support and ideas here!

Hi Loulou, thanks for your reply, I'm not sure the phsio is helping me at all, I've been doing Amy's routine for 20 days now and hurt worse than ever before.

Did you get worse before you got better, or did the exercises just help from the outset?

I'm hoping to go and see Helen Forth soon - a physio who has given talks about vulva pain on the vulvodynia support group. I emailed her the other day, and she said an assessment would be a good place to start and to stop the Amy Stein exercises until I see her if they are making things worse.

I have contacted the chiropractor that ivyrose mentioned too, who is going to ring me in a week or so to see if that might poss be the cause, I am not holding out a lot of hope though as I don't really have the back pain, but I do notice it is better when lying down and worse once I am up, which ivy rose mentioned too.

God - talk about clutching at straws!

I have provoked vulvodynia too - that is the same as vestibulodynia no? I have a fact sheet from my doc that says vestibulodynia (provoked vulvodynia) so I think it is the same thing.

I am so glad to hear you are getting relief from the exercises and not having to do the massage - the internal massage scares the willies out of me, but I know lots of people say it helps...

Good idea to keep the excel charts and diary. I keep a note on my phone of pain levels, but I'm not really noticing any patterns. Not sure I have the organisational know-how to plot on excel!

Let me know if you spot any patterns or have any theories about what helps you?

Have you been to see a physio? Or a chiropractor?

Let me know how you get on, or if you have found anything that helps?

Hi Anne

Sorry to hear that Amy Stein's exercises don't seem to be helping and i think, given your pain, that you're doing the right thing to stop them until you've had the specialist physio assessment. Just wondering, have you been doing the strengthening Kegel exercises? If so and it turns out you do have tight/overactive PF muscles then this might be reason why your symptoms are worse. I certainly don't do the Kegels (mainly becuase my biofeedback confirmed that my PF muscles were 'normal' - tho a bit slow to relax - and didn't need strengthening).

Also I don't do all the Stein exercises. The main one which helped me was a version of one of Amy Steins, i call it the frog pose (on your back, bend knees, then bring soles of feet together and let your knees drop down to the floor making sure feet are drawn up towards your crotch - relax and let your knees gradually drop closer to the ground - they won't go all the way!) This is good for adductor muscles and mine were obviously very tight as when i first started doing it i couldn't drop my knees very far. I don't think its the whole issue with me as i still have some discomfort (tho not pain unless i have a flare up). Because i've also been diagnosed by a chiropractor with a misaligned pelvis i'm also doing an exercise routine (for Condition II which relates to a misaligned pelvis) from Peter Egoscue's book The Egoscue Method of Health Though Motion (not a vvd book but a book about musco-skeletal function). Im also massaging any trigger points I find in my thighs including the 'cleft' where thighs join vulva area ie between the thigh and the outer labia - found some very tender spots there which have diminished through regular gentle massage.

All this seems to be helping me (have been doing this in a focussed way now for about 2 weeks now, prior to that I was doing bits and bobs halfheartedly). I'm just now waiting to see if the benefits will last - if no flare ups then I'm on the right track (fingers crossed!)

Finally (sorry, long post!) to answer your specific questions - i saw a phsyio once to have a biofeedback assessment and i'm seeing a chiropractor every few weeks (to sort out a shoulder problem I had as well as the pelvic misalignment she found). And I don't think I have vestibulodynia as i don't have pain on penetration though I do think I have clitrodynia (i'll do a separate post about that!)

Good luck with your physio - let us know how you get on.
Lx

Hi LouLou,

I'm so glad you are finding some relief for all your efforts. I think I need to stop flitting around halfheartedly doing everything and focus on one thing at a time and see what helps me.

I feel a bit down in the dumps after having done the Amy Stein exercises so full heartedly (up at 6.30 to stretch before the kiddies were up and again another once or twice a day for 20 days) and now feeling worse.

I didn't do the kegels, just the end the pain routine which is all about loosening and stretching, so not too sure why I feel worse. But I have still not had any good days since starting that routine, even now I have stopped! I feel almost like I have made it go from provoked to unprovoked, it just hurts all the time now, except when I am laying down in bed, so waking up in the morning is good, am tempted just to stay there sometimes! :-)

Anyway - off to the physio next week, and got an appointment with the dermatologist who diagnosed it on Thursday this week, and hopefully going to speak to the Chiropractor who helped ivyrose next week - so at least I feel I am doing something positive to find out what the cause it.

It's a nightmare isn't it, I felt so happy having a name for this thing, but now I have a huge task to find the cause and then the right treatment!

I'm not sure I have vestibulodynia now either, as I don't especially have pain on penetration, but it's hard to say as I have avoided that for so long now because of the pain that is there anyway!

Keep me posted on how you are getting on with the chiropractor. Have you had no flare ups for a while now?

I am soooo hoping I have a misalinged pelvis and that will fix the problem!

Take care

Ax