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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


vulvodynia

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vulvodynia

Post  owlcity on Tue Aug 05, 2014 8:44 am

I've bee recently diagnosted with vulvodynia. I had my first UTI and that was probably the trigger for me. I started using estrace topical cream and at first it didn't help at all. After few weeks i actually had one month with no pain or burning. I almost forgot that i have a "problem". The lastfew days the burning is back on and off, maybe not as bad as before. I don't know if i should ask my obgyn to give me a new prescription of estrace mixed with progesteron this time. I am getting close to being menopausal I suppose and my hormomes are pretty low. I can tolerate some burning but I never know what the next hour is going to bring. I am a nurse working in the hopital. I have pretty sick patients to take care of and I can't worry about how I feel. I am worried about taking amitryptyline or gabapentin. I can"t afford to be sleepy for hours at the time or quit my job, I am the only one working in my household. Anybody tried other things that worked? Does anybody know if EMUAID cream ever works? Big advertisement on line for it, hard to tell if it's a scam or it's worth the money.
Thank you all and i hope they come up with a cure. None of us deserve this:(

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Re: vulvodynia

Post  sailor_moon on Tue Aug 05, 2014 8:45 pm

Do you have any other symtoms besides the vulvodynia?

Have the doctors done a blood test over a 4 week period, doing a blood test every week to see what your hormones are actually doing?
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Re: vulvodynia

Post  owlcity on Wed Aug 06, 2014 8:50 am

Thanks for answering. No symptoms other then burning/stinging/pain. Mostly burning. My doc siad that vaginal dryness is common when you're 50 and most likely my hormons are low. I never actually had any blood tests. I'm pretty familiar with most nursing area expect obgyn/mother-baby/labor and delivery. Maybe I shoud ask my doctor to run some tests? I do seem to have the "classical" symptoms of vulvodynia. Grrrr! My life was so perfect before, I should've appreciate it more! We never do I guess. I dont expect a cure (wouldn't that be nice), just acceptable level of discomfort. I'm so demoralized right now, all I'm reading is that you may have this conidion for years! OMG! Years? I don't think I can take it for fow months let alone years. Thank you so much again for answering.

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Re: vulvodynia

Post  sailor_moon on Wed Aug 06, 2014 9:13 am

I'm only 26 and have had this sh*t for 14 months now. I totally get what you mean about having a wonderful life before Sad it makes me so sad.

I am only just seeing a doctor who knows what he's doing now, after 14 months of dealing with incompetent doctors who just wanted to put me on antidepressants and send me to councilling!

I have a lot of other symptoms accompanying my problem, which may or may not be related.

Many women with vulvodynia have other hormonal issues that the patient doesn't even pick up on until things get REALLY bad. I didn't pick up on my other symptoms at first until they escalated to extremes because I was so wrapped up and focused on my vulva, I was ignorant of all the other symptoms I was expiriencing, even though they all started at the same time (and the doctors were fobbing off my other symptoms as stress...ummm extremely sore breasts are not caused by stress!)

It wouldn't hurt to have blood tests, especially with the way you are saying about your response to hormones. And low hormone levels are suspected already, so it can't hurt! At least you will be ruling it out. It may not give you an answer, but it may!

I work in a pharmacy and one woman has suffered vulvadynia due to lack of estrogen. She uses estrogen cream and is on HRT and it fixed the problem. Another lady was experiencing vulvodynia-like symptoms because she had no testosterone in her body. She gets testosterone shots now and the problem is fixed. Lack of iron can cause vulva issues.....oh the list goes on!

It is up to you to decide what action you want to take, but if you are anything like me, you would do anything to be rid of this horrific condition.

The women on this site are awesome, I have gotten some very valuable information from this site, and the ladies are awesome to chat to for advice.




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Re: vulvodynia

Post  zarli on Wed Aug 06, 2014 9:21 am

Hi maybe you should seek the care of a specialist such as a vulva pain specialist. Don't worry about having it for years everybody is different yours could settle down once you hit a different stage of menopause. On forums they are great but they are just some of the stories of vulvodynia. People who beat it are not necessarily represented on here properly. Stay positive Smile

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Re: vulvodynia

Post  sailor_moon on Wed Aug 06, 2014 9:27 am

I agree with Zarli, try and seek out a specialist that deals with Vulvodynia Smile
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Re: vulvodynia

Post  bearferret on Tue Aug 19, 2014 6:12 pm

Ive been on Amitryptilin for three months and am now pain free, I took it at night before bed so didnt get sleepy during the day. Ive also taken Gabapentin for my back, not that did make me sleeping other times during the day even if I just took it at night. I am pleased with the result of Amitryptilin and would take it again if it flared up again, hoping it doesnt.

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Re: vulvodynia

Post  Alana3 on Tue Aug 19, 2014 6:51 pm

I beat it! But it is true most people who did beat it really don't come back on here.  I had mine about 7 years before I got my fix!  And I def recommend going to a vuvla specialist!

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Re: vulvodynia

Post  kpog on Tue Jan 10, 2017 1:09 am

This post is to sailor_moon. Hoping you are still on this thread. I also have vulvodynia and very sore breasts. Wondering if your issue turned out to be hormonal? What treatments have you tried and did anything work for you?

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Re: vulvodynia

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