Vulvodynia Support
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» Hope to all my suffering ladies
I'm scared EmptyFri Oct 23, 2020 12:04 am by ringostarr26

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

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

» How I cured my Vulvodynia!
I'm scared EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I'm scared EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I'm scared EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I'm scared EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I'm scared 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'm scared 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'm scared

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Post  Lynn Wed Sep 28, 2011 3:41 am

I'm 15 years old. My grandma and her sisters all had this, my step mom and her sisters, my step sister. They all had it. But they don't offer the same comfort as my own mother would... My symptoms started a few months ago, but I've had PTSD for over a year. History of sexual abuse. Is there anyway to stop this permanently? Anything, kill all nerves in me if I have to. I just got married a month ago... My husband was just starting to show me that sex didn't have to be violent, or controlling, or painful... and now this. Please, I don't care how, but there has to be a way. Does anyone know of a permanent solution to this problem?

Lynn

Posts : 5
Join date : 2011-09-27
Age : 28
Location : United States

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Post  Mette Wed Sep 28, 2011 11:09 am

Hi Lynn
First of all I'd like to tell you that I feel for you. It's not easy having this condition at such a young age (I was 17 myself when it started) and it sounds like you had a very difficult life so far.

There are lots of treatments for vulvodynia, but it's difficult to say which one is right for you, because every case is different.
Have you seen a doctor? If so what did she/he tell you?
The first thing you need to rule out is yeast or another kind of infection. If you have an infection it can be very easy to treat, but you need to get a doctor to take the tests.
If it turns out you don't have an infection there are lots of treatments you can try.

One thing I think this forces you to do is to take your own feelings seriously. There is a very powerful emotional componant to this and it is important to be comfortable and relaxed when you have sex otherwise it will hurt. To me this means that I have to make myself say no, if I don't feel like it eventhough I'm scared that my boyfriend will be angry or disappointed. Most of the time he understands, but even if he didn't it's still my body and I need to trust that whatever I feel is okay. That's important for all women to realise, but it's especially important to us, because it will worsen our condition if we don't.

How does your husband feel about this?

There is a way and I'm confident that you will not suffer from this always, but there's no easy answer and it is going to take som time.


Mette

Posts : 13
Join date : 2011-09-14

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Post  Lynn Wed Sep 28, 2011 1:17 pm

My husband is really good about this. Very good, an odd duck you might say seeing as he's just a year older than I am. I saw a few doctors, but people keep talking about tests and things and no one really did anything... it says that I have PTSD in my file, they're probably worried more contact would require sedation. That's what the doctors and counselors said the first time I went. Isn't there a way to just deaden all your vaginal nerves?

Lynn

Posts : 5
Join date : 2011-09-27
Age : 28
Location : United States

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Post  Mette Sat Oct 01, 2011 1:00 pm

I'm really glad to hear that your husband is so great about all this. He sounds like a great guy Smile

If you want to try to numb your nerves, try to use some lidocaine creme before sex (and any other time it hurts). You can get it over the counter at the pharmacy. It takes 30-45 minutes to work, so what worked really well for me was to put it on and then have foreplay for a little over half an hour. By the time the creme worked I would also be really turned on, which made everything a lot easier.
It's also really good to try and touch yourself (not in a sexual way) to explore where the pain is and how your body reacts. Also try to have sex in ways that doesn't hurt you (without penetration). That was really important to me since all the pain really killed my sex drive and it's nice to get in touch with that side of yourself.

Let me know how it works out for you and tell me if you need to talk about anything...

Mette

Posts : 13
Join date : 2011-09-14

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Post  Lynn Sun Oct 02, 2011 7:55 pm

It hurts all the time though... how long does it last? And isn't there a way to do that permanently? Nerve taps and such, I've heard of permanent ones. I just want this to stop NOW. I know there are surgical nerve blocks, done by removing tissues or permanently damaging the nerves therein. ...My pain causes my panic attacks, and my panic attacks cause my pain... I can't function normally anymore

Lynn

Posts : 5
Join date : 2011-09-27
Age : 28
Location : United States

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Post  Mette Mon Oct 03, 2011 8:41 am

I understand your desperation. I think every woman on this forum has felt that way at some point.
But you have to be patient. It's true that there are surgeries, which might help, but there is also a very high risk that it will just make your problem a lot worse.
There are lots of little things you can try. The lidocaine creme is a good one. The only side effect is some stinging in the beginning and there is no way of overdosing it, so you can use it as much as you need. If you do it 5-6 times a day you should be covered. You can also put some on a piece of cotton and sleep with it in your underwear. Some women are helped permanently by this, but it will take some time (3-6 months at least). My gyno suggested me to touch the area where it hurts for about ten minutes a day (not in a way that it really hurts). It is supposed to deaden the nerves because it gets rid of the association between touch and pain. But all of it will take some time.

I'm not a doctor, but it seems to me that your vulvodynia is very closely linked to your PTSD. Are you seeing a psychologist to help you with your panic attacks?
Maybe if you overcome some of your traumas it will also help with your vulvodynia. Lots of women who have been through sexual abuse get problems with cramps in the vagina for a long time afterwards. It's a perfectly natural reaction, because your body associates that area with something traumatic.
I know that this is not what you want to hear, because this is not a quick solution either. It takes a lot of courage to deal with PTSD, but I think it's the only really permanent solution for you.



Mette

Posts : 13
Join date : 2011-09-14

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