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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

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: 2

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


Needing Support for Vulvodynia - anyone able to speak I am struggling!

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Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  JS007 on Thu Dec 17, 2015 1:20 pm

Hi, I appreciate I have already posted a couple of things on here and thank you for the responses that I had. I am struggling to come to terms with having this condition - I wake up every morning thinking "this is going to be the day it disappears" or "after I go to the toilet today first thing It will feel normal"...sadly this is not the case. I started having symptons of discomfort back in June this year and only over the last month has the Gyneo suggested it is vulvodynia and put me on a course of Amitryptiline. I am now on 50mg a day (only upped this dosage 2 days ago) but I still have this feeling of "nappy rash" after going to the toilet, it is almost as if my skin becomes sensitive after pushing down for a bowel movement...or urinating, almost like the feeling of soiled underwear that rubs?? does this make any sense to anyone - I feel very alone with understanding this condition. I want the meds to work but don't know how long it should take to work?? I always have symptons EVERYDAY but they do vary dependent on my activities. I can have intercourse with no issues once inside - sorry TMI. I would like to hear how people get through having this before it disappears or gets under control? No one understands what this feels like, and the fact that because I don't have any "physical signs" of tenderness or redness etc. Is this still definitely Vulvodynia? I am worrying that it might be bladder related instead...but I feel everything down below??
I hope to hear from someone who is happy to give me some comfort that I will deal with this and get over it! Smile

JS007

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  WaahwaahUK on Thu Dec 17, 2015 1:42 pm

There are lots of people that have frequented this forum, and now don't, simply because they got better. People do get better. I understand the need for understanding with this condition, as it can make you feel so very alone. I think its important to remember that there are a lot of people who don't come here now because they got better. Healing can take time. Stress I believe can add to any pain. Empower yourself and arm yourself with knowledge and concentrate on being kind to yourself. This forum has helped me look at ways to improve how I feel and though I am by no means better, I do have better days.

WaahwaahUK

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  meelie on Thu Dec 17, 2015 9:53 pm

i don't come so often because i talked my primary into Rx for Trammadol for pain which keeps me comfortable most of the time. God bless this understanding Dr.

meelie

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  sailor_moon on Sat Dec 26, 2015 12:53 am

I am always up for a chat on here, so please feel free to PM me any time! It is so hard to try and vent to someone who has no idea how horrific this condition is. I wish this forum was more active like how it used to be. I would love to hear more about your story and how all this came about. Try and stay strong! xxx
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sailor_moon

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  sarisbaris on Thu Dec 31, 2015 4:15 pm

I am cured. I've been pain free for over 2 years. This didn't happen by accident. It didn't randomly go away. I was in and out of pain for 15 years until I found the right doctor. From what I have read on this site, my cure is rare. If the medicine you are taking isn't helping you, you need to find a doctor/medicine that can. Most doctors (both western and alternative) won't tell you that they don't know what it is. If they don't have a theory why it started and if your symptoms aren't getting better, then you need to find a doctor who can. When I finally found the right doctor (who is an alternative doc who gave me herbs in pill form... oh yeah, while I was 2 months pregnant) it took about 1 month for the pain to be manageable and 2-3 months for the pain to go away completely. It has never returned. Vulvodynia is just a label... it really only means your vagina area hurts. Seriously... that's it. It could be muscle, it could be an infection that they can't detect. It could be lots of things. Most doctors have absolutely no clue which is why this is so so hard for those in pain! We want answers and they don't have them. You need to be brave and listen to what the doctors are not telling you. Please read my post in 'Vulvoydnia Info' forum titled 'Cured from vulvodynia... ' There is hope!

sarisbaris

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

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