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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


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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