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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, …

Comments: 7

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 …

Comments: 0

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


Do I have vulvodynia?

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Do I have vulvodynia?

Post  Mvp1022 on Sun Apr 06, 2014 6:10 am

So, I have been to only 1 gyno (multiple times) for my symptoms, with no relief. So I took to searching on the internet. Right now I only have access to the one gyno I have been seeing. As of May I should be able to able to see other specialists. Please tell me what you guys think in the mean time.

First, i guess I'll start with the fact that i didn't get my period until freshman year of high school. And it was anything but normal i wouldn't get it for months and then I would get it for weeks at a time. I started the birth control my senior year to help regulate.
I didn't feel any symptoms. A couple months after I stopped taking them, I suppose just out of laziness and I was rarely, if ever having sex. I also don't believe ive ever had a uti or yeast infection. I don't know if this is relevant but I thought it was worth the mention.

I began seeing in my boyfriend in sept 2011. We began having sex in dec and by jan I began birth control pills again. After about 3 months of the pill I decided to try the depo shot.

February 2011 is the first "flare up" I can remember. I actually thought it was a uti (bc I never had one and just associated vaginal pain with utis. I also did have the urge to urinate frequently but nothing came out.) I took your standard uti medicine and within a couple days I felt better.

Until I felt the pain once again. The pain would be horrible and it would wake me up all through the night while I sat with a warm rag down there, crying my eyes out. It was occasionally a burning, raw feeling. Other times it felt like extreme irritation. This persisted until July which was the first time I saw my gyno about my pain. All she did was give me the standard talk no scented soaps and laundry detergents, cotton undies, etc. she also told me to try some light cream that was for irritated skin, not even specifically for your vagina, which worried me. I tried it anyway. The cream didn't help, but changing all my soaps and laundry detergent did help slightly.

I saw my gyno a couple more times, none of these visits helped at all. She would give me the yeast infection tests and all that good stuff. They all came back
Clean. She gave me a dose of yeast infection medicine "just in case." No surprise it didn't help. About a year later I got suspicious that depo shot made it worst, so
I decided to switch back to the pill. My gyno insists that if it was a reaction to my bc I would be seeing symptoms in other areas too. I think this helped a lot. My symptoms seemed to lessen from a pain scale of a constant 9
Or 10 to an occasional 7 or 8. I still feel the pain every day, but sometimes feel manageable, other days not so much

At the worst point of my pain I was irritated down there ALL THE TIME. Then at some points it would burn and feel raw down there. I've tried to look for triggers but honestly besides the depo I can't find a constant one. Also my change from thong to cotton under wear seemed to help. I always have used plain dove soap anyway. I try to use sensitive skin detergent but sometimes my laundry gets mixed in with the rest of the laundry and I notice no difference. Sex actually doesn't hurt that often. Though sometimes the day after it gets worst, but that's only sometimes. The final big thing I've noticed is it gets worst right before and in the beginning of my period. It also seems to get worse if I get very stressed and anxious. Oh and I have one last symptom that makes me question if I do have vulvodynia bc I haven't seen anyone else mention this system. Sometimes my pee smells very much like ammonia. I've been using Rephresh vaginal gel that's supposed to Help with balancing ph levels. This sometimes works.
Sometimes doesn't. This is ruining my life though. I rarely ever want sex. Work is miserable many days. I feel antisocial. I never want to go out bc that involves me wearing underwear and pants. Sometimes it
Makes me so sad that i might have to deal wth this pain forever.

I will go to a different dr when I am able until then what do
You think? I start my first full time job Monday and I'm literally terrified I'm going to be in pain all day.

Sorry this is so long and I probably seem
Illiterate. I'm tired and on my phone but I wants to get some feed back. Thanks in advanced.

Mvp1022

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Re: Do I have vulvodynia?

Post  Delilah1 on Fri Apr 11, 2014 9:26 pm

Hello and welcome to the forum. There are many wonderful ladies on here. Read through all the posts. I'm sure you will find hope and encouragement. I have been dealing with this condition for 18 months. I have been improving slowly. When this first started the pain and burning was constant at a level 9 or 10. Sex felt like being cut with razor blades. Now the rawness and irritation come and go. I have some days when I feel normal for hours. I continue to do the stretches and exercises, internal massage with dilators, Crisco for moisture, deep breathing, healthy diet. There are good books out there to read. Ending Female Pain by Isa Harera was most helpful to me. I am on no medication but continuing to get better. Don't lose hope. This is not a life sentence! Baking soda sits baths helped a lot too. Read some of my previous posts. Take care
Delilah

Delilah1

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Re: Do I have vulvodynia?

Post  Delilah1 on Fri Apr 11, 2014 9:28 pm

I forgot to add that my urine had an unusual odor too!!! No one else mentioned that. I no longer have that frequently. But once in a while it happens.

Delilah1

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Re: Do I have vulvodynia?

Post  LegendOfAspen on Sat Aug 15, 2015 4:29 am

I realize that this post is very old so you may not see it, and it's very possible you have vulvodynia, but given all of your UTI-like symptoms, habe you considered intersistial cystitis?? That also seems like a likely probability. Hope you're well by now!

LegendOfAspen

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Re: Do I have vulvodynia?

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