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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

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Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

Post  mikan92 on Wed Apr 22, 2015 10:35 am

Hi all,

I have yet to be diagnosed but I believe I have symptoms of provoked vulvar vestibulitis since 2 months ago after being treated with lots of (redundant) medications for a vaginal thrush which I wouldn't think was a bad one.
Since then my pain remained and recently I've been to a gynae twice who treated me with a potent steroid that took away some inflammation and stinging feeling (according to the gynae my skin looks normal now, compared to the first time I saw him it looked inflammed and dry), but the pain is still persisting. I really do not believe that this is simply a dermal problem, there must be something wrong with the underlying tissue, either it's still irritated or there are some problems with the nerves.

While I am applying olive oil every day as what my gynae advised (I think it's helping, but only did for 2 days so not sure if it'll alleviate the pain in long term). But I am a bit skeptical about the natural healing part because my condition has not improved much and I wonder if it'll really heal on its own a this rate.
Sorry for rambling but I've read a couple of posts about how taking this combi- amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina helped remove vulvar pain.
I would like to know the experiences of those who had tried this before and if it worked? I still don't really understand the science behind it, but I guess i'll want to give it a try.
Any advice would be appreciated Smile

mikan92

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Re: Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

Post  JulesB on Mon Apr 27, 2015 11:38 am

Be careful about dietary changes and supplements recommended for vulvodynia. For example, the low oxalate diet, tried by many with vulvodynia, is based on a single case! See: https://drjengunter.wordpress.com/2012/02/08/the-low-oxalate-diet-and-vulvodynia-how-a-case-report-becomes-snake-oil/
Perhaps dietary changes or supplements may work for the odd person, but there are many varied caused of vulvodynia. It won't do you any harm to try it, if you want to - I did. Spirulina and vit C are good for you anyway!

JulesB

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Re: Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

Post  mikan92 on Mon Apr 27, 2015 1:13 pm

Jules:

Thanks for the advice and article! Don't think I'll do the low-oxalate diet, I think I will try other remedies with less side-effects first! Will start with taking supplements that are good for my body anyway Very Happy
Do you mind telling me which supplements you took? I have a few in my mind but feel like I shouldn't overload my body with all these stuff so I want to select some to try first.

I saw from your previous posts that you did the manual de-sensitisation of nerves. How long did you do for an obvious effect to be seen? I've only done for a week but I don't feel much diff, the deep folds at the labia minor is still super painful to stroke! I've seen a post by a women who had significant improvement after 2 weeks, not sure if this isn't working for me?

mikan92

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Re: Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

Post  JulesB on Mon Apr 27, 2015 9:29 pm

What supplements do I take? Where do I start - I have got a kitchen cupboard full! I have problems with repeated thrush (persistent and repeated thrush, we think, was what caused my vulvodynia), so I take supplements for that. And also now in premenopause, so taking supplements for that! Anyway, I will weed out the ones I take for vulvodynia - basically anything that is good for the condition of the skin or has an anti inflammatory effect or is recommended to help with oxalates. So, that is: calcium citrate, zinc citrate, NAG (not NAC), B vitamins complex, hyaluronic acid, co-enzyme Q10, vit D, vit E, turmeric/curcumin, bioperine to help absorption of turmeric.
With the manual densentitisation you have to be patient and build up very slowly and gradually. It took a long time, but it worked. You need to retrain your nerves to register touch as touch, not as pain (which they are currently doing in their hypersensitive state). At the beginning even the slightest gentle touch meant pain for me. You do not want the touching to cause pain that continues afterwards. When I started it was just one very gentle stroke of the painful area every day, then I would add one stroke a week, very gradually building up the number of strokes until I could start adding a few more each day, then gradually build up the pressure. Very important: use lots of lube that doesn't irritate you (organic raw coconut oil is good, or Yes oil based lube). Eventually I got to 200 firm strokes and I was ready to try popping a finger in. One you gave got used to touch, you then need to progress to getting used to having something inside you again - you could use vaginal dilators, but those just looked like horrible hard plastic things to me, so I opted for the natural route - little finger, middle finger, little finger plus the ring finger part way in, then all the way, pointing finger and middle finger part way in, then all the way. Again, lots of lube. You want to push the finger(s) in and leave them there for a little longer each time. Later on you can move them in and out - only when I could do this without pain with two fingers was I ready to try putting my husband in - again, gradual build up - tip of penis first with no moving and keep in for a bit, then gradually deeper each time with no moving, once you can get him fully in with no pain he can then move a little - moving a bit more each time - loads of lube!
You can add pelvic floor relaxation and exercises too - once again the key is a gradual build up. The relaxation technique, exercises and desensitisation method can all be found in this book: 7 steps to pain free sex by Claudia Amherd. That's what I used. Much of the book is concerned with overcoming vaginismus (muscle tensing with penetration, and therefore pain), but it also applies to vulvodynia. You see, for those of us who have had vulvodynia we expect pain with intercourse, so even when the nerves have calmed down we expect pain, so tense up and so sex hurts (alcohol can help you relax). One recommendation with the pelvic floor exercises - the book recommends sitting on a soft juggling ball and squeezing that between you bum bones - no way was I going to sit on a juggling ball - I couldn't even sit on a chair! So I did the exercises without the ball - the book tells you how to do that.

JulesB

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Re: Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

Post  JulesB on Mon Apr 27, 2015 9:42 pm

How could I forget - omega 3, 6, 7, and 9. Basically Sea Buckthorn oil - that gives you all 4. Omega 7 is the new good guy - it is especially good for mucus membranes and keeping them naturally lubricated.

JulesB

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Re: Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

Post  mikan92 on Tue Apr 28, 2015 10:55 am

Wow thanks so much for the detailed advice, I really appreciate it Very Happy

Lots of supplements for me to try, I guess I'll start with some of them Smile definitely fish oil and calcium citrate! and probably multi-vitamins.
I believe manual de-sensitisation works, but I think my pain is due to tissue damage & thus inflammation (from using douche for the first time in my life, I know it sounds really stupid but I remember how it really hurt after using and the pain just lingered until now, I probably over-used it), so not sure if massage will aggravate the situation if my tissue is still repairing?
Atm I can put my index finger in but the vestibule is still painful so on entry I feel the pain. I'm trying to the perineal massage but don't think i'm doing it correctly haha. Massaging the inside bit gives me a bit of relief of tension I think! With the pain on vestibule I can't really add more finger because it means more touching of the vestibule:( I hope to get the pain less and then try your method Smile

Yes I totally agree with you! Even though I don't think my pain started with tight muscles, but I can feel that it's tight down there which gives me discomfort or sore even when the area is not provoked. I think it's because I've been feeling the pain and subconsciously tighten my muscles when I sit so that the area is kind of lifted from the chair & also my body weight.
Atm I'm trying to do some simple pelvic muscle stretches I've managed to find online, but I feel like these aren't enough to relieve my muscle tension. I was thinking of getting amy stein's heal pelvic pain video cause I feel like video is easier to follow. Does your book come with pictures (am really bad at following words instructions LOL)?
Maybe I'll do the pelvic exercises after my pain has decreased just in case it tightens my muscle more.

Atm are you able to do the exercises?

mikan92

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Re: Question about amino acid NAC 600mg. , Vit. C 2,000mg and 3 tablets of spirulina

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