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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6


Another one suffering

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Another one suffering

Post  Ldc on Thu Aug 18, 2016 6:51 pm

Hi, I was a bit reluctant about registering and posting here.. But this forum has helped me a lot so far. I read it almost everyday since I realized my problems down there weren't caused by an infection.

Well, I think I can skip the emotional journey, as all of you know what it is like. I am 24 years old, apparently healthy, no UTIs in the past and a couple of yeast infections, but many years ago. But like a couple of months ago this mess started. I am not sure why, I think there are many culprits. This year I was having more stress than usual because of university and my job. Suddenly, after my period (February) I felt a bit discomfort down there and I went to the doctor, who told me that I probably had yeast and prescribed me with clotrimazol. Well, I was not sure, because the only sympton I had was my inflammated vagina. No discharge at all! It was cleared up but it happened to me every month after my period till May. I went every month to the doctor, and she told me it was normal due to the ph changes during our periods. But I started to worry and to be really annoyed, plus the stress I was having in May, which was way higher than before. The results? My inflammation did not go away and I started to have a burning sensantion and what it seemed to be an UTI. But after the medication (antibiotics, antifungals, among others) and some negative cultures I had no clue what was going on. So were the doctors, neither obgyns, urologists and a dermatologist.

After one month and a half waitung for my body to cure and to get back I started to freak out and to google my symptoms. Vulvodynia came across. By that moment I was starting to feel my muscles (including my anus area) really really tight. I couldn't go to the toilet and I swear I never ever had problems. And I asked my boyfriend to help me, since he is working as a PT in a hospital. He pretty unterstand what is going on and we are fighting together, hopefully.

Well, after going to four different doctors with no relief (appart from a mild improvement thanks to corticoids and zinc sulfate, which was suggested by a dermatologist who saw the redness and irritation and a couple of 'eczemas' according to her), my mom thought of a friend of our family who is working as a doctor. He is specialized in muscular and nerve related traumas and he was the First one understanding how I was suffering and what could be going on (since apparently I had no infections). After an appointment he examined me and found out that probably, due to the inflammatory process (triggered by tampons? I still don't know but I am suspicious), my area was hypersensitive and my nerves were all crazy sending wrong signals. And, of course, he detected muscular problems, both inside and outside.

He has told me to use a compound cream of amitriptiline and baclofen and I have already started with a couple of PTs to solve the Problem and desensitize it.

And now I am at this point. I have the burning sensation both inside and outside, itchiness (only sometimes), redness and irritation in the vestibular area and ocassional "pricks" in my lady parts and my back part.

Well... I feel happy since I am already on track, today I had my second session with the PT and I think I was lucky enough to be treated as fast as I did, only two months before it all started.

But, as I newby here, I have a couple of questions to you Smile I have read like a thousand posts and I would like to ask for advice. I will tell my doctor, but I have checked here some sucessful stories related to the use of amitriptiline and Lyrica. Another doctor suggested me to take a minimun dose of Lyrica (75 mg) to help with the nerve pain. Do you think it would help me? I mean, taking topical ami and simultaneously Lyrica (orally).

Aaaand, regarding the soreness... I am not sure what to do. ATM no soaps, no nasty chemicals (but i want to look for "natural" laundry soap and gel), only water to clean the area, no jeans, cotton undies. It is still irritated but I am also a little bit worried about my "flora" or whatever is inside of me. The smell is a bit stronger and my discharge is also a little bit sticky, but far to be copious (I also feel a lot of dryness since all this started). I was wondering if it would be okay to continue on the probiotics, since I think that appart from the muscle/nerve problem, something else could be wrong inside as I took a lot of different medications in june (and maybe my good flora is still recovering or I don't know).

Thank u very much for reading me... I know it is really really long. And so sorry for the misspelling, I am not English speaker. Keep fighting, girls!

Ldc

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Re: Another one suffering

Post  PainBlogger on Fri Aug 19, 2016 1:41 pm

Ldc wrote:
But, as I newby here, I have a couple of questions to you Smile I have read like a thousand posts and I would like to ask for advice. I will tell my doctor, but I have checked here some sucessful stories related to the use of amitriptiline and Lyrica. Another doctor suggested me to take a minimun dose of Lyrica (75 mg) to help with the nerve pain. Do you think it would help me? I mean, taking topical ami and simultaneously Lyrica (orally).

Aaaand, regarding the soreness... I am not sure what to do. ATM no soaps, no nasty chemicals (but i want to look for "natural" laundry soap and gel), only water to clean the area, no jeans, cotton undies. It is still irritated but I am also a little bit worried about my "flora"  or whatever is inside of me. The smell is a bit stronger and my discharge is also a little bit sticky, but far to be copious (I also feel a lot of dryness since all this started). I was wondering if it would be okay to continue on the probiotics, since I think that appart from the muscle/nerve problem, something else could be wrong inside as I took a lot of different medications in june (and maybe my good flora is still recovering or I don't know).

Thank u very much for reading me... I know it is really really long. And so sorry for the misspelling, I am not English speaker. Keep fighting, girls!

Firstly, your English is great!

Secondly, topical amitriptyline and oral Lyrica - obviously I can't say for definite if it would help you. We all respond so differently to medications. What I can tell you is that I was taking oral amitriptyline and oral Lyrica simultaneously and they are often prescribed in combination. I didn't have any terrible side effects although I do feel much more alert since I changed to duloxetine. I'd say it's worth trying Lyrica. If you don't find any benefit then it's one option you can cross off the list of possibilities. If it helps and side effects are minimal then you'll be glad you tried it Smile

PainBlogger

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Re: Another one suffering

Post  Ldc on Fri Aug 19, 2016 2:40 pm

Thanks Smile It made me smile. I do love languages and I am a translator.

I think I will definitely ask my doctor. He is doing great and since we have a close relationship since I was a child I really trust him. By know, the constant burning is vanished most of the time and I am still like super sensitive (that means, after wiping or by touching it it hurts and burns). At least I am far better than a month ago. The thing is that what worries me the most is the hypersensibility mostly on two tiny spots at both sides of my vestibule and I am just freaking out all the time because I want to get better. Then I remember the key word, patience. Sorry I am beating around the bush, haha.

I hope time and all I am doing right now will help. I am always terrified thinking about not being able to intimate again with my beloved bf. But today I am really positive and I think it will be okay. Thanks for your answer and your personal opinion Smile Smile

Ldc

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Re: Another one suffering

Post  lindsey_taylor on Sun Aug 21, 2016 8:00 pm

Hello and welcome to this forum! Your English is fantastic! I'm so sorry for the fact that you are suffering from this, but so glad that you are making progress in improving! Please continue to let us know how things are going for you!

lindsey_taylor

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Re: Another one suffering

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