Vulvodynia Support
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» Hope to all my suffering ladies
I hate this!!!!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I hate this!!!!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I hate this!!!!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I hate this!!!!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I hate this!!!!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I hate this!!!!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I hate this!!!!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I hate this!!!!! EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
I hate this!!!!! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


I hate this!!!!!

3 posters

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Post  ameliaamelia Wed Sep 03, 2014 12:27 am

I am really not sure what to do at this point in time. I hate this condition so much but was not told by my gyno any types of treatments available- all she gave me was the NVA self help tips for vulva skin care, and didn't even tell me the name of the condition. I will describe all my symptoms so if any of you have very similar ones/treatements that work you can let me know.

I have been prone to yeast infections all my life and over the fall I noticed an increase in them. I would also have random periods where I would have almost unbearable itching sensations from my vagina. I didn't really think much of it because usually they would go away. In January I had one incident where the I itched the area so much that it caused one outer lip of my vagina to swell almost 4 times the size it usually is. Towards the end of the month sex began becoming slightly painful. I could still have intercource but I could only do very basic positions that had no deep penetration, and after sex I would have slight burning, stinging, and itching from the area.

Forward to march, it became too painful to have sex. Sex felt like sharp shooting pains and it burned too much to even try. I also have this weird white pilly discharge that happens if I dont wash my vaginal area at least twice a day. I went to a doctor in april who had no clue what it was and ran several tests on me for stis and yeast infections etc. After the results being inconclusive he directed me to a gyno.

She seemed to know what my problem was right away but did not tell me the name of the condition. I only found out what the condition is called TODAY! I have felt so absolutely alone during all of this and I am so happy to finally have a name for my condition and a support network. I have broken down crying to my mom several times from feeling so alone and frustrated but she doesn't understand. My doctor only gave me the NVA self help tips and did not tell me the name of this horrible condition which made me feel even more issolated.

My symptoms include: constant redness, periodic intense itching sensations, soreness, burning, white bally discharge, and stinging (all of this is on the vulva), and in my actual vagina there is just extreme soreness if any pressure is applied. It is the most frustrating thing in the entire world. My age is 18 by the way. Non of my friends understand at all what I am going through but they feel really bad for me. I have diarrhea almost daily and I think it could be related to my condition.

The only thing I have found to help is rinsing my vulva area out with cold water. I haven't really tried anything else except for flora pills but those didnt work. I went off of my birth control pills and also have tried to modify my diet to stop my diarrhea. Please recommend treatments if you know of any that have high success rates! (I react badly to anti depressants).

I am so sorry if this entire thing was badly worded or sounded stupid. If any of you took the time to read this THANK YOU. I feel so much better after finding this website. I can not believe there is a support group. This is exactly what I needed. All I can say is this is the most frustrating thing ever and I am so sorry that so many of you have to deal with it.

ameliaamelia

Posts : 3
Join date : 2014-09-02

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Post  ameliaamelia Wed Sep 03, 2014 1:37 am

Some other symptoms ive identified after reading other peoples posts:
-Strange shooting pain that goes up from vulva randomly
-Muscle cramps in toes/feet/legs/hips

ameliaamelia

Posts : 3
Join date : 2014-09-02

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Post  sailor_moon Sun Sep 07, 2014 9:52 pm

Oh babe, your vulva symptoms sound exactly like mine! Itching, swelling, the discharge. The only thing that is different is the pain on touch, I don't have that.

Do you have any other symptoms or are you in good health otherwise? I am finally seeing a decent doctor and he thinks it may be hormonal, as my symptoms go in a cycle at certain times of the month....and my period is not regular. I am sick and nauseous every day. Like morning sickness but im not pregnant.

Im only 26 so I know how hard it is being a young person trying to live with this horrific condition. X
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  sailor_moon Mon Sep 08, 2014 3:56 am

Oh babe, your vulva symptoms sound exactly like mine! Itching, swelling, the discharge. The only thing that is different is the pain on touch, I don't have that.

Do you have any other symptoms or are you in good health otherwise?  I am finally seeing a decent doctor and he thinks it may be hormonal,  as my symptoms go in a cycle at certain times of the month....and my period is not regular. I am sick and nauseous every day. Like morning sickness but im not pregnant.

Im only 26 so I know how hard it is being a young person trying to live with this horrific condition.  X
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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I hate this!!!!! Empty My vulvodynia has basically vanished

Post  EverythingIsDifferentNow Fri Sep 19, 2014 11:54 pm

I'm gonna go straight to the point, try out these treatments:
-calcium citrate pills (cheap, won't upset stomach, can be taken with/without food)
-1 vitamin pill daily (natural!)
-The nerves that are shooting pain in ur leg and foot sound like you have some pelvic nerve damage, so try out pelvic muscle exercises (you don't NEED a physical therapist, you can do it at home like me, can find it on youtube)
-eat organic, low oxalate, not super acidic (Whole Foods will become your best friend, && DON'T TRY AZO CRANBERRY PILLS, they won't help you!)
-EXERCISE daily

to be honest, I dealt with problems with my Vjj since I became 13 or 14, but it got really bad this year, so I feel your pain. I couldn't go to social events, I was in a bad mood a lot of the times, and felt depressed and a bit suicidal. But doing research on my own I found my own *cure*. However, this may not work for you. It varies from woman to woman, but HONESTLY I don't see why it wouldn't.

I hope you get better. PLEASE TAKE MY ADVICE. I am young proof that this can be cured. Don't trust doctors, or at least most of them (;

EverythingIsDifferentNow

Posts : 33
Join date : 2014-09-13

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Post  EverythingIsDifferentNow Fri Sep 19, 2014 11:56 pm

Btw email me if you need support and advice, I'm here for u I love you

EverythingIsDifferentNow

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