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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, …

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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

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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