How I cured my vulvodynia

That's useful to know, I assume all of these products, are only to be used on the outside of vulva area, nothing put inside lips or anul passage at all?

The vulva harmony is for external use only. So is the saginil gel, but you can get saginil pessaries and internal applicators. I think the ingredients are slightly different for the internal use one. Coconut oil, vit e oil and Yes lube can be used internally.

Thanks Suki, I am using the Dermol 500 still but only externally, I have been prescribed Yes lube for internal to use every morning, as using the Vagifem at night.  I will ask my gynaecologist when I see her next about the uncomfortable feeling.  Funny thing is, I had that same uncomfortable feeling about 7 years ago, went to gynaecologist then through GP and he said all ok, just vaginal atrophy and said to use HRT cream.  I ended up deciding to use Replens and did that for about 6 months and it all went so stopped using anything, perhaps I should have carried on with Replens or Yes.

Yeah, I think with vaginal atrophy once you have found something that works you have to keep using it or the VA will come back.

Good luck to you kkay and I hope the psycho helped. Have you considered a double pronged attach by combining physio with acupuncture?

Attack

Yes, absolutely, but I haven't found find a western acupuncturist where I live (India) 

Oh, I see. Well, how about eastern acupuncture? I didn’t try it myself, but it may be worth a try.

I don't know much about it

Hi Kay, I am thinking of trying acupuncturist for my Vulvadynia.  Suki mentioned finding one that practices western acupuncture but I also haven't found one, I live in England.  I found a fairly local practice with 4 female acupuncturists and I am going for a free 15 minute consultation next Friday.  I asked her if she had heard of the condition, she said she had and had good success in treating it, so I will probably give her a try.  She did say if I really wanted the western acupuncture she could put me on to someone who dealt with this,but she said in her opinion the Chinese method is equally as good.  

Hi Linda, can I ask where you are based in the UK? 

I couldn’t find a western Accuptunure or an Accuptunurist that knew about vulvodynia.... however I have had my first  Chinese Accuptunure and they have recommended that this is actually more highly skilled than western kind as it requires much more studying - my Accuptunurist researched what vulvodynia was before our consultation (she has treated people with menstrual problems) and said that Chinese Accuptunure can help so fingers crossed!!! 

Hi bearbear, how do you manage to work, I can't as mine is sitting all day and it's too painful to sit too long.  I am in Wiltshire, where are you based?  I found a chinese acupuncturist so good to know that is good.  What did she do on your first session.  Did you feel any different after it?  I am really hoping it will work.  Has a bad day today, uncomfortable feeling all day and pain around 6pm and very weepy.  Fingers crossed for you!!

Hi Linda, I make sure that I wear quite cosy stuff to work, I have brought a special cushion that helps (couldn’t find a donut one with hole in middle doesn’t seem to be many that have good reviews) so I got a pillow from amazon that’s good for bad backs and other things and seems to help as it sort of elivates your vulva area off of the uncomfortable seat - I also make sure I walk around every hour (say to go get a drink or go to the toilet) to just take the pressure of that area! 

I also found sitting down all day really painful but have noticed since doing yoga and pilates that stretching has helped my symptoms - today I came out of pilates and it stopped my symtpoms completely as in pilates you have to engage your pelvic floor muscles and control them whilst learning to breathe with it. 

As for my Accuptunure I am based in Sussex but I had a 1.5 hour session to begin with, she went through and asked about my whole medical history and what my current symptoms was... she explained how she had a chronic health condition herself and this is why she got into stidying accupumture as she healed herself!! She explained how Chinese Accuptunure works (it all makes so much sense) and then began with the treatment. I only had 4 pins (one in foot, 2 in leg and one in hand) didn’t hurt just uncomfortable in some places then she put this Chinese herb think called matcha and put it at the top of the needle and lit it with a lighter.... when it burns it makes the needles go hot and is a lovely warm calming affect on my body! 

I do honestly believe that this may help me get better... it was very good to relax me and let my body relax (after months of streessing from this bloody condition)!! Give Chinese Accuptunure a try... I am and will let you know of my progress  

Hope this helps! Any questions just ask! 

Hi Bearbear,  I also have a donut cushion but can only sit for about half hour at a time, so going into the office would be unbearable, at the moment I am working at home, my boss said just do what you need to get better.  Not sure how long he will allow me to do so thoigh, although I did say I could go long term sick, but think he prefers that I work from home than do this.  I too think the yoga and meditation is helping quite a lot plus lots of pelvic floor exercises all day too.  My free 15 minute consultation for acupuncture is this Friday when I shall book the first session if I get on ok with her.  I really hope it will work.  You sound as if you are feeling the benefits from your acupuncture too.  How often are your sessions?  And how many do they say you might need?  I have had quite a good weekend so far, managed to shop Sat morning and did a half hour walk in the afternoon, and today went to town and had an hour looking round shops.  Not too much pain at all.  Not sure if it's the yoga, increase in Nortriptyline or Dermot 500 cream, probably bit of all.

I have a colleague (when I do go into the office) who has a bad back and works on her computer standing up. She has a special workstation that holds the screen and keyboard at the proper heights for standing work.

Hi Bearbear, just wondered how you are getting along with acupuncture and how you are doing pain wise?  I am seeing the acupuncturist this Friday for a chat before booking.  I think the pain has decreased though slightly since last week.  I am hoping it will slowly get better each week.  I def think my yoga and exercises are paying off, and it's really strange because I have noticed that whilst I am doing the meditation cd, which is 45 minutes long, I have absolutely no pain at all, which really makes me think it's also stress related and whilst in deep meditation the nerves must be relaxing also.  When I get a bit of aching now I pile on the Dermot 500 and it cools and settles it down now.  I haven't had the real bad stinging pain now for quite a few days, just the aching and slight burning but not bad.  Although I am still taking Sukis advice and relaxing, doing nothing most days, just being lazy and reading.  The odd walk I do for an hour at most is bearable too now, plus sitting on my donut cushion in the car is much better, at one time I couldn't stand sitting in the car at all.  I am really hoping that the acupuncture will finally zap it.  The Nortriptyline at 20mg is better I think, but I will try 30mg soon.  Let's hope we all bear it very soon 😛

Hi Bearbear, booked acupuncture for next Tuesdsy. Will let you know how it goes, she seemed very nice lady and confident she could help me.  She said I has lots of channels blocked that need freeing so fingers crossed,  how are you getting on?  I have had couple of fairly good days, went out all day today without any stinging pain so hopeful it's getting a bit better.

Hi Bearbear, how are you progressing with this awful condition?  How many sessions have you had so far and are they helping at all?  I had my first session with Chinese acupuncture  last night and it went ok.  She asked lots of questions first, re food, life style, family etc then put in about 12 needles in knee, foot and toes for around half hour.  She said there is blocked channels with a lot of damp in some.  She took blood pressure which was good, 120 over 80. Then explained she wanted to treat the condition not just the pain, but next time she may put some in spinal are for pain also and use the herb you mentioned as my body is very cold.  I can't say I noticed an immediate change though, perhaps it will take a few sessions.  Got another next Tuesdsy.  I did notice though that whilst the needles were in me, I had a strange smell, like a sort of burning, but it was only me could smell it.  It went once the needles were out.  Also I have been quite pain free since Friday, but once I arrived there the pain came back with avenged do which shows its stress related, it did go when I got home again.  Like to hear how yours is going.😀

Hi Bearbear, how are you progressing with your acupuncture?  I had my second session Tuesday and I think it is def helping.  She put needles in my knees, feet and also my spinal area this time and said my pulses are improving and clearing.  When she put the needles in my knees I felt nothing when first put in but then felt a surging and unusual pain fir few seconds which she said is the nutrients rushing through.  I also felt very calm and sleepy too after this session, and yesterday was the best day I have has with no pain and almost felt normal again.  I can sit now for longer periods of time and going in the car no longer hurts.  I think things are slowly getting back to normal again, and I honestly think it's the acupuncture working.  My acupuncturist Kent me a book explaining how it all works which is really good.  She said whilst in China she actually watched a caesarean birth all done by acupuncture, no drugs at all.  They even do open heart operations purely with acupuncture.

i have noticed a vast change in my mood too, much more relaxed, which I also think is due to the acupuncture as she is treating the whole body not just the Vulvadynia.  

I must say say a huge thank you to Suki, because I know without all her help the past few weeks I know I would never have reached the point I am at now, her knowledge and help has really saved me from a miserable existence and I am sure many others too.

Hi Linda, 

Sorry I haven’t been replying... this thread always goes into my junk email! 

I haven’t given so good over the last couple of weeks... was very defeated yesterday and have been very negative over the past few weeks thinking I’ll never be pain free or have painless sex again. I also get sad as I see some people only have either provoked or unprovoked whilst I have both. 

I have my first gynaecologist appointment in a week which I’m really looking forward to although I do feel they will tell me to do the same thing that I am doing! 

I am still trying my best though to do everything... although I haven’t been to yoga in a while and I did noticed it was better when I didn’t that. Accupunture defo makes me feel better once I’ve come out, I always feel pain free during the session and the night a after the session. I think that I may be rushing things abit.. after my session last Friday (I do it every Friday after work) I tried doing pelvic floor exercises but keep doing them wrong (I just squeeze in and out) as I don’t understand how to engage it properly despite having that book. I did manual desensitisation but then put one finger in then a small dialator. It was fine that night but then the days since have been probably the worst it’s been. I also wonder if it is diet related so from next Monday I am going to cut out the nightshade family foods to see if that helps. 

I couldn’t find a donut cushion online (UK).... 

I am using coconut oil which seems to soothe it. 

It hurts a lot more when I am sitting down at the office all day during the week but I also work weekends and have to wear jeans.... I am doing my placements 9-5 as I am a social work student then waitress at the weekends and then I try and go to gym in the evenings sometimes..... so I do a lot! Exercise seems to not make it worse if I wear big comfy shorts! 

I am also wondering to come off the pill but need to try one thing at a time first (food illumination) next I think. 

I am getting exhausted though and worry about my degree.... I constantly research about this every single day and this is distracting me away from my masters degree work!  

Hope everyone’s journey is going well.... I need to restore my faith again! 

I am so pleased the acupuncture worked for you too. I really did feel leaps in my recovery after an acupuncture session. I too felt very calm and relaxed afterwards. I’d highly recommend it to anyone suffering from neuroceptive pain.

bearbear, I am so sorry that you don’t seem to be getting better but everything you are doing to get better (yoga, acupuncture, amitriptyline, etc) will not change anything if you are doing things that aggravate the nerves - that will just cancel out the positive effects of the treatments. I was told my my consultant that it is so important to take it easy - no exercise, no sex, no tight clothes and no sitting with pressure on that area. I also had provoked and unprovoked vulvodynia and had to give up so many things - sex, long walks, belly dance, tight jeans, underwear, baths, sitting - for many months and ince I was well on the way to recovery I could gradually build up those things again e.g. the first exercise I did was just walk past a few houses on my street and back, each week I’d go a little further (this was in the summer, so I wore a skirt and no underwear!).

There are loads of donut shaped cushions available on amazon. Just put in the search term ‘ring cushion’.

Hi Bearbear, please don't get too upset over this, you will beat it eventually.  Look back at my first posts on here,ni was just so down and negative, and like you thought it would never ever go but thankfully with a lot of effort and trying everything possible, I feel it is now gradually going.  I think being negative which I know myself is really hard not to be, but it makes the condition worse as I am sure it is partly stress related as every time I felt stressed the pains got worse.  The thing I did first was to arrange counselling every week to help me talk things through and learn to be more positive.  If you are really depressed then they will help a lot.  Are you on Nortriptyline at all?  I am now on 30mg, and I think I don't need to go any higher as this seems to be working.  I have had no bad side effects from it but if you do, then they soon go once your body adapts to the drug.  Also the acupuncture should help too, I feel this has been the final boost for me, I have had 2 sessions now and really feel better after each one.  My acupuncturist did say that it doesn't always work straight away for everyone, some people it takes around 6 sessions to benefit, so don't give up.  Also make sure you do the yoga every day, I do it at home, only takes around 15 minutes a day, the baby pose and knees to chest and I really believe the pelvic floor exercises do help, I do 10 of them 4 times a day, so 40 a day. If you aren't sure you are doing them correctly, practise on the loo, when you pass urine, try to stop and start the flow, if you can do that, you know you are doing them correctly, just hold everything under there in.  I didn't do the manual desensitisation much, I tried a couple of times but not internally just the outside.  But I thought it best to leave that, as in my mind the nerves needed to be left to settle down on their own gradually.  Are you also drinking lots of water?  I try to drink 6 glasses a day.  I also think you might benefit from the diet too, I have just gone right back to basics, nothing but water to drink, and no food with more than one ingredient, it might give the body a rest from digesting lots of diff foods.  So I only eat cereal, meats, veg, fruits, nuts, cheese, eggs and pulses nothing else at all.its a bit boring but it's not forever.  My acupuncturist feels I am doing my body good too.  Also no potato or tomato either.  But can eat rice and pasta.  You can get donut cushions on line, just type in donut cushions and they are in Argis, Boots and other places too, it is a great cushion as the sore parts go into the hole so not actually touching anything, hence not painful to sit, I don't go anywhere niw without it.  I have used both coconut oil and Dermot 500 cream and to be honest, I actually find I get more relief from the Dermot 500.  I tend to use the coconut oil at night and the Dermot on in the day after each loo visit.  I wouldn't wear jeans though, I normally live in jeans but have not worn them since November now, try leggings instead, much mire comfortable.   It's really exhausting doing all these things but I feel it's needed to finally get rid of it, plus by concentrating on all these things you aren't worrying over it so much.  Also get a meditation cd, and do that every day too.  It's great for relaxation and expect it also helps to relax the nerves too.

Dont despond, you will get there as I think I have now almost.  I am now believing it will go which is far different to how I felt a month ago.  I am in month 4 now.

keep in touch, talking helps I found, this post was my life line.

Yes Linda, I had ups and downs at the beginning to because it is such an experimental stage - some things you try do help but other things just aggravate and set you back in your recovery, but gradually I found what worked for me and stuck to it. Like you say, it is mentally exhausting because you have to be so determined - with each set back, you have you just steel yourself to carrying on trying.  Giving up so much you may have enjoyed doing is depressing too. But you have to focus on the future when you will be pain free and can wear skinny jeans again like I do. But, like I said before, the caution never goes - because I now know vulvodynia exists and how it feels - I still haven’t gone cycling yet - that saddle!

Hi Bearbear,

Sorry to hear your not in a good place. Keep going at all things you are doing. 

Mine seems to get worse if i sit down for a long time, i got a cushion called boney parts, was around £26 but worth every penny! 

Dont know if this will help anyone but i purchased sensitive sanitary towels which were quite pricey so this time round i just got always senstive thinking there would be no difference but i must say i feel really irritated today so dont know if that would make a difference for anyone.

Got my physio therapy at the end of the month which i cant wait for! Xxx

Hi Suki,  just thought I would say I am beginning to feel almost normal now.  I have now had 3 acupuncture treatments and having weekly ones at the moment, which I think must be helping.  Although I never feel any different whilst actually having the treatment.  But I have had no stinging pain now for almost 3 weeks!!  Still a slight discomfort but not all the time.  I am now on 30mg of Nortriptyline and wondering if to go to 40mg or stay on 30mg as the pain has gone.  I feel so much better mood wise now, and have had my last counselling session this week, as I feel I no longer need them.  Still doing the diet, no potatoes, tomatoes etc and onky drinking water.  

I have a lot lot if cattaghh at moment, not sure if side effect of Nortriptyline or not.

Meditation going well also yoga, in fact I am frightened to stop anything just in case the stinging pain returns!!  I shall soon have to return to the office after working at home for 4 months almost but I feel I may be able to cope now sitting, as long as I use my donut cushion.  I am actually now looking forward to my holiday in May, which before I was thinking of cancelling.  I also am not thankfully thinking of it 24/7 like a few weeks ago.

it looks as if this awful condition can finally be beaten, something I thought would never happen.  I can't thank you enough for all your advice, it has been my life line.

It is really great to hear that Linda, thank you. My vulvodynia pain also gradually receded until it was what I would describe as discomfort rather than pain, but I was still very very cautious and continued to do everything that was helping and did so even after I was completely pain free because although the the nerve reaction had dropped below the pain threshold, they may still be hyperactive. As you are on the mend I don’t see any reason to up the dose of nortriptyline. As I think I have already said, even though I have been pain free for almost 4 years I am still on amitriptyline, still apply all the oils, still do pelvic my floor exercises and still sit on a donut cushion - so afraid am I that it will return. I stopped the acupuncture after about 10 sessions, once I felt completely better. Do you now need to stretch your vagina using dilators to get it back in good shape for sex, as I did?