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

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

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

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

» 7 months since the diagnosis
Struggling EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Struggling EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Struggling 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!
Struggling 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


Struggling

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Struggling Empty Struggling

Post  doublej Wed Dec 13, 2017 7:36 am

It's been getting to me a lot lately. The emotional pain of vulvodynia. It has made my sex drive plummet and that's affecting my relationship a little bit. On top of that I have a couple of friends that are trying to get pregnant and that just makes me wonder if I will ever be able to have that.

I have been struggling with this disease for about a year and a half now. I have seen four different doctors and tried too many different solutions to count. I've done different creams, pills, dilators, and even a physical therapist. The current doctor I am seeing "specializes" in this type of stuff but she still admits that it's really just trial and error with me. I am getting really worn out. I guess the hardest part about this disease is that nobody really knows why I have it or how to fix it.

I am scared that this is something I am going to have to learn to live with. That I have to accept that biological children may be out of the picture. That I may never be able to experience what sex actually feels like. I really need some encouragement or something to boost my moral.. I'm about ready to give up on trying to fix it cause it is so mentally draining...

doublej

Posts : 2
Join date : 2017-10-10
Age : 25

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Struggling Empty Re: Struggling

Post  PainBlogger Wed Dec 13, 2017 12:26 pm

I can totally understand your frustration and fear that the pain will never go away. I felt like that for a long time. However, I am now in my last few weeks of pregnancy (achieved through natural means). So there is always hope.

Rather than me retype my history, you can read it here: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement if you want. Ignore the "four months" in the post title - it's been a lot longer than that now.

The most important thing I can say is don't give up. Try everything. Even consider re-trying things that may not have worked earlier in your struggle. It took me a long time to see progress from physio/physical therapy, exercises and dilators but it worked in the end in combination with medication. It takes so much patience and mental resilience to fight this condition and that is so difficult to maintain. Have you considered trying some psychological therapy to help with the associated anxiety? I don't know how old you are but for myself, being in my late thirties, there was extra pressure to get better quickly so I could TTC and that extra pressure caused extra stress. Which of course didn't help.

I hope you see some progress soon.



PainBlogger

Posts : 219
Join date : 2015-07-27

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Struggling Empty Re: Struggling

Post  doublej Thu Dec 14, 2017 3:19 am

I’m only 19, so there really isn’t a lot of pressure to have kids and so forth, but it’s still just exhausting. I’ve been with my boyfriend for 2 years now and can’t even have sex with him. I go to the doctor for exams and I burst out in tears from the pain of a qtip touching me.

I guess when I’ve been struggling with this it’s most difficult because I never see any progress. Nothing has made it remotely better, in fact it’s gotten worse than it was to start.

I just would like to be able to have a normal sex life, to start a family of my own, etc.

I’m just tired.

doublej

Posts : 2
Join date : 2017-10-10
Age : 25

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Struggling Empty Re: Struggling

Post  sarisbaris Tue Jan 02, 2018 11:13 pm

Don't lose hope! Please read my blog. I battled V for 15 years and I consider myself cured now. And my pain was just like yours. It burned to the touch and actually it burned for no effing reason at all. And no, it didn't take 15 years to cure. It didn't take long, once I found the right advice. I have a husband, a healthy sex life and happy crazy toddler. Be careful what you wish for! Haha!

My blog explains all. And yes, you are correct. The doctors do not understand what's going on and facing that is scary. But don't worry. I healed. You can heal. And I understand your exhaustion. Being in chronic pain is draining, specifically on your adrenals. So we'll need to heal those as well. You're not making up the exhaustion.

Read my blog and let me know if you have questions. I have some topicals that might help the burning that will save your sanity while you kill the virus and heal your organs.
Sarah

http://myvulvodyniacure.blogspot.com/


sarisbaris

Posts : 69
Join date : 2014-02-17

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Struggling Empty Re: Struggling

Post  Mintaherb Sun Jan 14, 2018 4:29 am

Did you start taking hormonal birth control around the time your pain started, or around 3-6 months before? If so, that could be the cause of your vulvadynia. It might be worth considering coming off it and seeing if things settle down. You can also apply a compounded estradiol/testosterone cream to the vulvar vestibule, which will help to correct the hormone imbalance caused by hormonal contraception.

Mintaherb

Posts : 5
Join date : 2017-11-02

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