Seeing Mayo specialist soon for VVD

Linda, if you are determined you can be cured. My dermatology consultant who specialised in vulva pain and ran a vulva pain clinic, so had seen hundreds of women with such pain said that the ones who don’t get better are the ones who don’t stick at it - they get impatient, give in and go for a gym session or have sex and they set themselves right back to square one. It is absolutely imperative that you do not do anything to aggravate the nerves while you are doing whatever you have found to help relieve the pain. Stick with what helps you and don’t give in. I had such a setback. I didn’t give in as such, but when I was mostly better and in what I would describe more as discomfort rather than pain I finally went for my Pap smear. I had already delayed it for a year or so. I was worried because I’d had a scare before with abnormal cervical cells. But that speculum put me right back to square one. I was so devastated. All that time working towards being pain free wasted! But I knew I could get better because I nearly had already. So I just continued with the treatments that worked for me and hoped I’d be completely better before my next smear test.

Thanks for your support Suki.  Did your consultant see lots of women that had been cured of it completely?  I am not so much impatient but more depressed, as I keep reading that it's very difficult to get rid of if at all.  I am trying so hard, but getting very upset that I can't live a full life.  Did you get good and bad days, did the good days gradually get more and more frequent?  Are we talking about weeks here of pain or months or hopefully not, years?  I think what worries me too is the lack of activity, what it is doing to my stamina and muscles as doing nothing but lying around all day.  Why do the nerves take so long to settle down, it's hard to understand as I can think of nothing at all that even started it in the first place.  Does everyone else feel as hopeless as I do?  I so want to be positive which will probably be better for the condition anyway, but it's just so hard.  I really thought the cream was helping, and now I don't know if to continue using or not?  I am not sure how much to go up to with the Nortriptyline either as my GP said up to 20mg but my consultant gynaecologist said continue until necessary.

Hi Linda, yes my consultant dermatologist had seen many women who had been cured - the ones that were determined, did nothing to aggravate the nerves and tried everything. The minimum time to be pain free, she had found, was around 1.5 years. I was pain free after 1.5 years but still had some pain after intercourse which lasted a couple of days. So, I could say it took me around 2 years to be fully pain free. My pain was continuous originally, getting worse throughout the day and if provoked, but with the multiple treatments (50mg amitriptyline, yoga, pelvic floor exercises, manual desensitisation, acupuncture, saginil gel) it gradually reduced to be more manageable, then to discomfort not pain, then only soreness after intercourse. As time progressed I noticed that even if I did something to aggravate the nerves recovery time to the base level of pain was shorter. Acupuncture was particularly effective for me - after each session there was a jump in the progression to being pain free. You can see my full story in my post “how I cured my vulvodynia”. Other women have posted their success stories on there. Like you, I was very depressed at first, lay in bed most of the day, spent a lot of time crying and trying to figure out what had caused it. But at some point you have got to say “this is enough, I refuse to spend the rest of my life like this”. Another word of advice - stop reading the horror stories in the internet and concentrate on getting yourself better. 

Hi Suki, thanks so much for your pep talk, did me good, I am taking your advice (and that of my friend and husband) not to read any more horror stories on the Internet.  It looks as if I am looking at another 15 months of this then, which doesn't make me feel good, but if there is an end eventually then I shall keep going.  I was fine this morning, but this afternoon back came the stinging pain, your description of it feeling like salt rubbed into a wound is very exact.  It's strange how sometimes it's mostly on one side and others around the anul area.  I am hoping to try all you have done, taking the Nortriptyline, not sure about yoga as couldn't get out to do that right now, but I have contacted a local female acupuncturist today to enquire if she can help at all. I am trying the manual desensitisation myself to teach the area to not expect pain from touch.  I haven't thought about the Saginil gel yet, I will look into that too.  It's so good to hear your progress from laying in bed all day crying to eventually beating it.  Thank you so much, you are helping more than you realise

Dear Linda,

you do not have to go out to do yoga, just do it at home. I did the happy baby pose and the knees-to-chest pose (apanasana) which are good for relaxing the pelvis and freeing up the pelvic nerves. I did these before and after my pelvic floor exercises which I got from the book “seven steps to pain free sex” by Claudia Amherd. I did these every day at home.

Hi Suki, found those 2 yoga poses on u tube, and did them both this morning, will do then every day now.  I have had tingling sensation inside this morning, is that a good sign.

Not sure about it being a good sign. But it definitely means it is nerve related.

Did you just have pain, or find you get the horrible uncomfortable feeling inside, not painful but more like a sort of full feeling, like when a tampin inserted wrongly, I get that a lot more now than the stinging pain.

Sorry, I can’t really remember specifics. I just know thatbat the time I had a burning, searing pain posterior to the vagainal opening (forchette and perineal skin).

Thanks Suki.  I don't expect you really want to remember it either,ni know I wouldn't.  I am a little worried about the discomfort though.  The pain I can understand would be nerve damage, but I am wondering if the discomfort could be something wrong inside, perhaps something like excess skin, or where through vaginal atrophy the internal skin has stretched or drooped somehow, causing a dropping sensation.  If I lift inside, as in doing pelvic exercise, it momentarily disappears but when I release it is there again.  Very strange!

Hum. Has anyone (medical) had a look inside recently?

Actually, that first thing I’d do is pop a finger inside and see if I can feel anything unusual.

I had an examination by my gynaecologist couple weeks ago, she said all seemed normal, but I wonder if they would notice if skin was loose, or dragging, would imagine they would have to look inside with a camera for that, I wouldn't know myself what is normal or not.

Did she have a look inside with the aid of a speculum?

Hi Suki, yes she used a speculum.  But I went to my counselling session yesterday, and she said it could possibly just be poor pelvic floor muscle tone, that is causing the dragging uncomfortable sensation, they may just need tightening with lots of exercise.  I did think that was a good reason, so I am upping the pelvic floor exercises and doing a lot more each day.  As when I hold in whilst doing the pelvic floor exercise, it momentarily gives relief and when I relax and let go the hold it returns again.  I will do this until I see my gynaecologist again in March but if it doesn't help I will ask her what she thinks.  The yoga you recommended is really good, doing that every day too.  Yesterday I had no stinging pain or burning at all, just the uncomfortable feeling.  Did you use Vagifem and Yes lube too?

Som if she used a speculum, she would have seen if something was prolapsed or loose.

I did not use vagifem or any form of oestrogen. I did not have vaginal atrophy at the time. I did get VA in 2017 (oh, the joys of turning 50!) and now use an oestrogen cream (ovestin) in there which has improved my natural moisture levels and the condition and elasticity of the vaginal wall. Before the ovestin I tried vagifem but I had a bad reaction to it - it make me swell up so much inside that I couldn’t not even get a finger in or the applicator.

I am on Amitriptyline, Gabapentin and Cymbalta.  The Amitriptyline treats the nerves which is what all my doctors say they think is the problem. That and very tight pelvic muscles.  My PT fixes it, I get an infection, and whammo I;m right back where I started.  Yes it is so depressing. I try and stay positive but sometimes I get very down. I know how you feel Linda.  It is depressing.  Hopefully some day they will find a cure.  If I get any positive information from my "specialist" I will pass it on here. 

Hi Debi, I went to see an acupuncturist yesterday for a free 15 minute chat, and have booked a 2 hour appointment for this Tuesday.  She was a lovely lady, and had experience of vulvodynia and very good results, so I am hopeful.  She looked at my tongue, and said it is tinged with yellow and has pitted holes around the edge, which is what she expected to see she said.  When I got home uni looked at my tongue and yes it is exactly as she said, and my tongue is not normally like that.  She took both pulse points and said there is a lot of dampness in the body.  She said she treats the body as a whole, not just the vulvodynia. She assured me she can help me and reduce the pain and put my body back as it should be. She will use the needles in my hand, foot and leg and some in the spinal area for the pain.  I must admit I feel quite optimistic about the treatment now.  My husband was chatting to a youngish lad about 23 in the waiting room, he was telling my husband how he had an operation on his hand and they bodged the op and he had no movement at all in his fingers, which they told him would be permanent.  But after 6 treatments with Sue, he can now move all his fingers except one.

 

Hi Linda, I hope you have as much success with the acupuncture as I did.

Hi Suki, thanks, I am really looking forward to my first session on Tuesday.  Do you think I could be in the mend now?  I had a good pain free day today and walked around the town for 5 hours and a bus ride too.  I have started using the coconut oil last 3 days and it's really good, no bad reaction, so decided to keep using it.  Did yours gradually get better and better each week?  I am still on 20mg Nortriptyline but had a really muzzy headache night before last, keep waking in the night also although go straight off again.  My friend said its probably just until my body gets used to the dosage.  I am going up to 30mg next week.  Still doing yoga twice a day and 50 minutes meditation every day also.  Diet still keeping to food with no more than 1 ingredient and nothing but water.  It does feel as if things are steadily getting better now, so hope the acupuncture will really zap it.

You may well be on the mend. Think positively and if you have the odd bad day don’t let it pull you down. Keep doing everything you have found works. If you struggle to go up to 30mg, try going up by 5mg. Your body will take time to adjust each time you go up. I would have terrible constipation at first which would die down after a couple of weeks.

Hi Suki, had my first acupuncture session last night and went well.  I have been good the past 4 days or so anyway, no bad pain, until I got to the acupuncture session when it got bad, must have been the stress.  She stuck in 12 needles in knee, ankle and toes to get rid of the cause, free up the channels she said.  She might try some next time in spinal area just for the pain, but would rather aid the cure of vulvodynia not just stop pain.  I had a very strange smell whilst needles in which disappeared when out couldn't explain that.  Not sure I have felt much different since the session though.  Did you feel any different after your first session or not?  How many sessions Wouk you say before it felt different?  She might use some herbal thing on the needles next time that warms the whole body.  Hope this works and not just a waste of money.

I would feel benefit straight after but that would fade away over the next few days. It took a few session before the benefit started to last.