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

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» Found relief after more than 15 years of pain!
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» 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
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» 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


Vulvodynia is ruining my life

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Vulvodynia is ruining my life

Post  amy124 on Tue Aug 16, 2016 2:33 pm

Hi everyone. I've read through a bunch of your stories and I am so glad I found this forum. I've felt so isolated in my issues but it's reassuring to find a group of people who seem to be experiencing something similar to what I have been experiencing...although I would never wish this on you all because it sucks.

I'm 18 years old and I've been struggling with all sorts of bladder/vaginal issues for about a year. Experienced no pain, sensitivity, or any issues and had painless sex for about a year before all these issues started. I started getting urinary pain and soreness every month around my period and after sex. I went to numerous doctors who all told me I had UTIs and treated me with antibiotics (I tried cipro, bacterium, nitrofurantoin, macrobid, etc.) ...I was treated 8 or 9 times within 6 months. All these courses of antibiotics gave me yeast infections (of course) so I was also treated for those too. I finally went to a new doctor with yet another UTI. She did a urine culture and told me I didn't have a UTI this whole time and she wasn't sure what was causing the pain. She gave me antibiotics anyways and, like all the previous times, the symptoms went away for the most part. However, since I began treatment for all the UTIs, the burning pain when I pee has not completely gone away. It is bearable and I can live with it but it's definitely annoying. I feel like I'm not really emptying my bladder all the way. My symptoms seemed to, for the most part, go away for a month or two (minus the burning when I pee). The past 3 months however have been awful as a whole new set of issues have emerged. Now, I have intense burning in my vulva area that randomly happens for days at a time then goes away for days or even a week or two. It usually happens closer to my period. Sometimes so painful I can't walk or it wakes me up at night. It feels raw and on fire and it burns to pee but definitely doesn't feel like a UTI. It seems to be an external skin issue as I don't have much burning inside my vagina. I have visited 4 doctors who tested me for all sorts of STDs, yeast infections, UTIs, bacterial vaginosis, did pelvic exams and told me they can't find anything wrong. I changed my clothing detergent, I drink more water, I wear cotton underwear and avoid tight clothing, I use vaseline on the area, I try to limit processed food and sugars, I don't drink caffeinated drinks, but nothing seems to be helping. I am in a relationship and I have pretty much stopped having sex entirely because I am terrified that it will cause more pain (also, my boyfriend got tested for STDs too and came back clean). I'm only 18 and its so frustrating that I am already losing my desire to have sex at all due to all these stupid issues. All my doctors told me this is just something I will have to live with. I feel like I'm going crazy because no one believes me since all my tests come back negative and physically I look fine. I was so relieved when I found this forum because all the problems described here are exactly what I'm experiencing. So glad Im not alone in all these issues.

amy124

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Re: Vulvodynia is ruining my life

Post  emalita on Tue Aug 16, 2016 4:11 pm

Hi amy124,

I'm so sorry you're having to go through all this.

You had a lot of antibiotics and yeast medications in a short period of time. My issue was caused by being over prescribed antibiotics for what I thought was a UTI that wouldn't go away. I had a confirmed UTI that was cured during one of the initial rounds of antibiotics, but the pain continued because the antibiotics destroyed my healthy flora. Your flora can be out of balance without you having an actual infection, and your vulvar skin can be super irritated from any yeast creams used as well as any excess discharge that you may have had from your flora being out of whack.

If you think you have a UTI in the future, I would suggest looking into having some D-Mannose on hand to see if that will get rid of it without antibiotics. Do a google search and do some research on it. It has a lot of good information supporting its use for UTIs.

For your flora, you could try some probiotics meant for vaginal health to see if it helps improve things. Unfortunately, for me, they did nothing (test confirmed they didn't increase my good bacteria), and I've found that it just took a lot of time to get things to calm down once I stopped throwing product after product at it.

How long has it been since you've used any medication or product vaginally? When was your last round of antibiotics?

emalita

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Re: Vulvodynia is ruining my life

Post  PainBlogger on Tue Aug 16, 2016 4:44 pm

Just because the doctors can't see anything wrong and tests show up negative for things doesn't mean your pain is not 100% genuine. And it doesn't mean you'll have to live with this forever. If you haven't already then I'd recommend a referral to a pain management specialist. Gynaecologists/dermatologists/urologists are not always great at treating chronic pain when they can't find an obvious cause to treat. Pain specialists are experts in medication for chronic pain. Physiotherapy/PT may also help you.

You can read my story here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I've had a lot of urinary issues. I still can't empty my bladder properly (it empties fully but it fits and starts rather than one continuous flow). But I'm heaps better than I was. It can take time to find the optimum treatment regimen (and often it's a combination of things needed) but don't lose hope. The best general advice I can give you is to be stubborn. It can be hard when you're in pain and your energy is sapped, but people do get better from this.

PainBlogger

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Re: Vulvodynia is ruining my life

Post  WaahwaahUK on Wed Aug 17, 2016 12:39 pm

I echo the sentiments already expressed here. Personally I ended up in awful pain I feel partly from being over prescribed creams like steroids and thrush treatments when my GP didn't know what was actually wrong. I would say now be cautious what you use there whilst you are in pain, and perhaps look to more specialist help. Don't give up. If possible get a physiotherapist who specialises in women's health to assess you. There are so many causes and contributory factors to this kind of pain. As PainBlogger said, be stubborn. In the meanwhile I'm sure you can see from other posts, that keeping things natural and keeping irritants away from that area as much as possible will help. You're not alone.

WaahwaahUK

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Re: Vulvodynia is ruining my life

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