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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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Stacys story

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Stacys story

Post  stacybrevin on Wed Jun 08, 2011 1:19 pm

Hi My name is Stacy. Last December I got a horrible yeast infection and with that I developed vulvodynia and IC. It never has went away. It has gotten better to some degree. I went on a yeast free diet and used dyflucan for 6 months. I just cant seem to find a trigger. I am going to therapy soon. This has ruined my life. I also have fibro and have had it for 12 years. I cry all the time. Sex is so painful now. I sick and tired of trying things that dont work and spending money. I just want it to go away.... Any suggestions?

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Re: Stacys story

Post  noni on Wed Jun 08, 2011 2:26 pm

Hey Stacy

Im so sorry to hear about all of your struggles with vulvodynia. Sadly its quite common...I had to see 5 doctors before my diagnosis and all along the way I was told I was crazy or making it up.

This experience can be very distressing and can take a huge toll on your emotional well being. I have found some relief with amitriptyline. Its not ideal. But I would rather have atleast some relief rather than nothing.

Stacy you mentioned yeast...alot of us were told it was yeast when all along it wasnt...or it could be that atleast in your case the yeast may have been there and you got rid of it, but you may have been left with irritated nerves in your vulvar area.

Either way its difficult to find things that work.

your in good hands here!
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Re: Stacys story

Post  stacybrevin on Wed Jun 08, 2011 2:35 pm

Yes I think your 100% right. I have struggled with fibro for years. Its irritated nerves. the things that use to bother me for years dont bother me anymore... its like everything is down in the crotch area now. I saw a Dr a week weeks ago for burning stool.. He said honey you have what I call Fibro BUTT. lol Hes probably right. I have also had burning tongue for a year from acid reflux. Its just as horrible. THat was in yr 2003. I believe its all from fibro. I prob just need to relax. What about swimming pools? I live at the pool in the summer with my 4 kids. I have already been there twice and I went in my cloths. I really wanna give it a try. I think my symptoms will prob relax with a pt....if they are indeed fibro related. Thank you for being here for me. My womanhood has been temporarily takin from me..... I am gonna get it back....Smile

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Re: Stacys story

Post  noni on Wed Jun 08, 2011 2:39 pm

Hey Stacy

It seems like you have been through a lot. I applaud you for your courage to keep going. Since my vulvodynia started I have developed other symptoms...such as, burning hand and feet. When I am at work stressing out I get severe hand and foot burning. My hands go red at the fingers.

Its scary sometimes because you wonder whats next?

I also can relate to feeling like a part of my womanhood has been taken from me.
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STACYS STORY

Post  ria on Wed Jun 08, 2011 2:52 pm

Hi Stacy,

We all know how you feel it seems to be the pattern for most of us with V. My advice find the right Doc yes I have seen at least 12 before I got anywhere near a diagnosis. Try and take some kind of medication to stop the nerves firing give you some relief, I know your probably thinking dont want tablets, well cant speak for everyone but I said the same thing but you have to get pain relief even though it hasnt completley gone I can walk and I am not sitting on ice. Have you tried GUMed not sure where your from?

Get your fight back we have to hit this from all levels mind body spirit, try and relax this helps find what works for you. This website is great as we all give our own spin on what we do. I do Biofeedback, yoga, hypnotherapy, gabapentin, olive oil rubbed on the vulva skin first thing in the morning and then last thing before bed. Listen to music or watch a film this has helped me when all I wanted to do was cry...............read through all the posts and find what works for you.

You will get to grips with it. My pain is constant so I hit it from all levels.


take care

Ria

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Re: Stacys story

Post  stacybrevin on Wed Jun 08, 2011 2:58 pm

Thanks so much!!! My pain is not constant. When I go to bed at night and sleep...it totally goes away. I wake up feeling perfect until I go to the bathroom. It gets worse throughout the day and by night its the worse. A week ago I was like a 1 or 2 on pain level and then I used a new soap and BOOM......it went up to a 7 just like that. Thanks for the encouragement.

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Re: Stacys story

Post  stacybrevin on Wed Jun 08, 2011 3:05 pm

YOu know I wonder if part of it is physcosamatic. SInce doing the yeast free diet I lost a lot of weight. My hair started falling out. Well its been going on for 2 months...one day I noticed a lot of hair in the shower. I got so stressed. Then my head started burning. it was on fire. I relaxed in a few days...found info that it happens when you shock your body with new foods and lose weight your hair can fall out. Everytime I would stress out about it the burning instantly came back. It reminds me of when I was so stressed years ago and had to move to FL I have burning all over my body...my head, my face...my legs. It went away eventually.... It just seems like stress can do so much. I am going to focus on yoga or walking. I am a woman of faith...but I haven't been acting like it. I have allowed too much focus on these symptoms...they all just rotate. around and around they go..... I know that sounds funny but I am being serious. Its horrible. I hear ya....whats next???????

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Re: Stacys story

Post  Sarah001 on Wed Jun 08, 2011 6:50 pm

Hi Stacy I have fibro too so you're not alone. Vulvodynia is very common in women with fibro because of how messed up our bodies are from the fibro stuff. I highly recommend physio, with fibro there's alot of muscular problems involved so working on tender points where you can stand it, trigger points that are relevant and relaxing the muscles should help. IC is something that also frequently involves a tight pelvic floor as is problems with stools so it does seem like pelvic floor therapy is your best bet. There's a drug called Lyrica (Pregabalin) which is used for V symptoms but is also licensed for fibro specifically so ask about trying that. Women often start with a yeast infection or a UTI and that sets the pelvic floor off so once the infection has gone the pain remains because of those tight muscles. Naomi also did a long course of Diflucan and I seem to remember she mentioned hair loss from it so I think the Diflucan probably caused that. If it hasn't taken the pain away it's highly unlikely yeast is the current problem. Get your pelvic floor checked and let us know how you get on.
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Re: Stacys story

Post  stacybrevin on Wed Jun 08, 2011 7:17 pm

Thank you so much!!! I see hope.....Smile

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Re: Stacys story

Post  stacybrevin on Thu Jun 09, 2011 12:01 am

HOw about the swimming pool? DOes it present a problem for you guys?

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Re: Stacys story

Post  noni on Thu Jun 09, 2011 3:23 am

I havent tried swimming pools since my diagnosis...im terrified of the chlorine to be totally frank with you.
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Re: Stacys story

Post  Sarah001 on Thu Jun 09, 2011 1:31 pm

I'm with Noni on that one, I wouldn't risk the chlorine so haven't been near a pool since this started. Each to their own though and we all react differently to things so you may be ok, I can use bubble bath with no further irritation whereas some of the ladies on here can't. You could try putting a layer of vaseline on your skin before swimming to keep water off it as much as possible.
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Re: Stacys story

Post  stacybrevin on Thu Jun 09, 2011 1:45 pm

If the pool bothers wouldn't that be a dermatitis problem? I am still trying to figure all this out. People that live in town and not well water...there water is filled with cholorine. Does anyone talk about there water bothering them? I am sure the pool has many more chemicals..of course then city water....

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Re: Stacys story

Post  noni on Thu Jun 09, 2011 3:45 pm

Stacy

Thats the thing...for alot of us the vulvodynia is a skin issue but in the sense that it is the skin/tissue that is irritated from hyperactive nerve endings. Its all related. So although vulvodynia CAN be strictly a skin thing like ie: lichen planus etc etc....for a lot of us its just the skin is very inflammed/irritated from the nerves acting hay-wire....hope that makes sense.
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Re: Stacys story

Post  Sarah001 on Thu Jun 09, 2011 5:10 pm

I completely get why you asked that Stacy, it's often bothered me that one person is saying it's not a skin issue then they tell you to avoid putting things on the skin! I too got confused about that and it didn't make alot of sense but as Noni said it's the skins reaction to the nerves that's the problem so things can irritate that.
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Re: Stacys story

Post  stacybrevin on Thu Jun 09, 2011 9:49 pm

totally sounds like fibro to me...the way you described it. wow.

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Re: Stacys story

Post  jules on Thu Jun 09, 2011 11:24 pm

i tried a pool at my gym one time. OUCH. my skin burned terribly. i even exposed my vulva to water right when i got out of the pool. that's didn't help. the chlorine burns the skin. i would be careful w/ pools. some aren't as chlorinated as others. i had one doc tell me to stay out of pools and one doc who told me to try it out and see if it bothers me. now i know, i guess.

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Re: Stacys story

Post  stacybrevin on Fri Jun 10, 2011 2:13 am

I would like to explain what I have had to endure with the burning tongue...maybe it could help us make sence with the burning vulva. I dont know...Im kind of brainstorming right now. In 2001 while I was pregnant for my 2nd child I developed acid reflux. I wouldnt take any meds till he was one. I started on aciphex. Within 7 weeks I was feeling normal again. I got off of it becuz I was preggo again. Then within 3 months I developed this burning tongue. It was awful. The pain was unbearable. I wanted to die. I went back on meds when she was like 6 months old. I have no idea how I got through that....it was non stop pain. I found a message board for burning tongue. I knew mine was caused by acid reflux. It took about a year for my nerves to calm down. Serious....that is a long time. I am still on drugs...and I hate it but living with a burning tongue is the worse. I have tried to analyze why it causes burning tongue. The acid causes my muscles to tighten up....and it causes my tongue to burn.... Just like the vulva. Today I went swimming and my bathing suit tie behind my neck started to make my tongue to burn so I moved my tie to the side of my neck and it went away. I believe at least in my case they are very similar. The painful vulva started with an infection....and yes the nerves are being over sensitive right now. THats probably why my pees burns me and I do better with water flushing the acid away. I really believe that a PT will help me a lot. Has anyone tried any natural muscle relaxers? I dont know I am determined to have a success story. Smile Thanks for everyones help and for your positivity!

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Re: Stacys story

Post  stacybrevin on Fri Jun 10, 2011 2:15 am

I went to the pool today and didn't get totally in the water. I was splashed with water and it didnt seem to bother me. I dont know if it would be worse if I would of went in it totally!

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Re: Stacys story

Post  jules on Sat Jun 11, 2011 12:18 am

Stacy, whenever you pee, pour tap water on your vulva. that was recommended to me by a nurse practioner. i carried around a small squirt bottle of water in my purse. that way you are getting the urine off of your skin. also they recommend using fragrance free toilet paper, cotton underwear and washing your underwear in dreft detergent...no dryer sheets. just some ideas.

p.s. the pool water didn't burn my vulva until i had been in the water for awhile.

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Re: Stacys story

Post  Sarah001 on Sat Jun 11, 2011 12:11 pm

Lots of us girls have burning in other areas too, I have burning feet as do some others here and someone else mentioned burning hands and scalp. I have a friend with the burning tongue problem and she's on similar meds to the ones we have for V. They say it's crosstalk between the nerves so some nerves get upset by something and set off other nerves but in the case of fibro as you found with moving your strap a bit it's frequently related to muscles because we have such knotty muscles all over. I definitely recommend seeing a physio.

As for the swimming pool I wouldn't risk it but if you're determined to try it then give it a go and see how you get on. You may be fine with it or you may not but the only way to know for sure is to try it. I would use a bit of vaseline though just to reduce contact with the chlorine.
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Re: Stacys story

Post  noni on Sat Jun 11, 2011 8:45 pm

Hey ladies,

I think its wonderful that we have this forum to share our ideas and experiences. I have also developed burning in my hands and feet....I find I get it worse when I am stressed out or am running out of energy.

It makes sense that when one part of the body has crazy nerve problems that it could also have an effect on another part of the body.

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Re: Stacys story

Post  Mouse on Sun Jun 12, 2011 3:10 am

Hey Noni, I also have the burning hands but only when I wake up in the morning. I have bone pain in my hands and feet all the time. I've recognised for a while that my hands are stiff and sore but woke up a couple of weeks ago and my first thought was they are burning... and the penny dropped! Ladies on here have burning hands and feet. Another thing to add to the list!

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Re: Stacys story

Post  Sarah001 on Sun Jun 12, 2011 11:49 am

I don't know if anyone else finds this but the burning sesation in my feet is more like an ice burn if that makes sense? It feels hot and cold at the same time and I find myself putting socks on despite there being a burning element to it. My V doesn't feel like an ice burn however.
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Re: Stacys story

Post  Zazu on Mon Jun 13, 2011 6:08 pm

Swimming irritates my skin and the weird burning/prickly feeling is worse after. However, I don't have constant pain, although I do have unprovoked pain. I'm sort of in between VVS and V, I think. To go swimming I have to weigh the effect against how much I want to go!
I'm curious about the fibro. My biggest problem these days is constant muscle pain, on both sides of my body, that seems to migrate between my knees up to my neck. Sometimes it kicks in for no reason. I've had to cut so much out of my life because of it, and physio/strengthening exercises don't seem to help. I'm tired all the time. I also seem to be stupider - messing up words when I talk, forgetting where I put everything, etc. However, I don't have any problems sleeping, which I know is a major symptom. Anyway, I'm just wondering if that sounds familiar or if it's just the usual pelvic floor problem radiating elsewhere?
Thank-you ladies!
xx

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