Vulvodynia Support
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» Hope to all my suffering ladies
New member looking for a support system EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New member looking for a support system EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New member looking for a support system EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New member looking for a support system EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New member looking for a support system EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New member looking for a support system EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New member looking for a support system EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New member looking for a support system 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!
New member looking for a support system 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


New member looking for a support system

4 posters

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Post  iheartcereal Tue Jul 16, 2013 6:07 am

Hello all-

I am 32 and have been suffering from vulvadynia for years and am in dire need of a support system.  Basically, I've never had pain-free sex and experience a lot of pain/stabbing/burning with penetration.  I have some pelvic floor issues, but the doctors also think there's some neurological issues as well.  So much burning.  I did about a year of physical therapy a year ago and have been at it again for a few months.  I've tried dilators, creams, pills, etc and have seen many doctors about this.  Unfortunately, I do not feel any closer to a solution than I did when all of this started.  It's so frustrating when you do what the doctors tell you and still nothing improves.  I'm losing hope and feel very isolated and alone.  My husband tries to be supportive, but he does not understand what this condition has done to me mentally- let alone physically.  Because this issue is so private and not easily understood by those who do not suffer from it, my husband, therapist, and health care professionals are the only ones that know what I'm going through.  It's hard to keep something like this secret, especially when I feel like it's ruling my life but I'm too embarrassed and ashamed to tell anyone the truth.  My husband wants kids and as things stand, it's just not an option.  At this point in time, I can barely get through a pelvic exam.  I'm also getting to the age where all of my friends are having babies and it makes for an awkward conversation when people ask me if my husband and I plan to start a family.  What am I supposed to tell them?  Not only am I worried that I'll never be cured, I'm afraid this condition is going to ruin my marriage.  I really need to connect with people like me so that I feel understood by SOMEONE!

Thanks for letting me vent.  I hope to find some solace on this message board.

iheartcereal

Posts : 4
Join date : 2013-07-16

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Post  tandaschroeder Tue Jul 16, 2013 9:07 pm

You can email me at: amandanielsen8@gmail.com. I agree with everything you said & have been through it all. I have experienced that heartache and mental anguish. If there's one thing I want every woman to know, it's that there is a cure. Email me any time.

tandaschroeder

Posts : 26
Join date : 2012-10-30
Age : 36

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Post  Tashie999 Thu Jul 25, 2013 8:47 pm

Hi,

Just to give you some hope, I thought I would never be able to have children. But I had no issues, just had to time it right & bear the pain to conceive & I have 2 gorgeous children now. I would also argue that if sex was not possible but you wanted to get pregnant that there are other diy options you could try. Its a challenge yes but not impossible.

I still have a lot of pain but on a positive my gyneo has advised that having the children naturally did kill off some of those hyper sensitive nerves so things are a little better post pregnancy.

keep positive hun
T X

Tashie999

Posts : 3
Join date : 2013-07-25

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Post  iheartcereal Sun Aug 04, 2013 5:21 am

Tashie999 - Thanks for giving me some hope! I have been doing research of my own and have seen there are several ways of getting pregnant without penetration. Who knew?

I have heard that a vaginal birth can open things up a bit; however, my physical therapist has also told me that it can go the other way. See has seen, time and time again, many of her patients worse off than the were before because of all the tearing, stitches, and scar tissue. It's overwhelming because you never know how your body is going to respond. At this point in my life, I just don't want any more trauma to the area than I have already endured.

iheartcereal

Posts : 4
Join date : 2013-07-16

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Post  Sebby (Admin) Sun Aug 04, 2013 8:04 am

Hey and welcome to the forum, I too am 32 and since I got married recently do find people ask all the time about us having a baby! I'm so so broody and so so scared lol.
With regards to the tearing in childbirth issue take a look at my post about pregnancy and birth in forum 'support and advice' Sarah has posted a link to a training device to help stretch muscles before birth and reduce likely hood of tearing!
In general, keep intimacy alive with your husband, it doesn't have to be penetration. I know it's hard, sometimes just the thought of messing around down there can cause anxiety! I'm being referred to a different pain clinic also. So always keep fighting, looking for answers and post if you need support x

Oh and Tashie999 - I would be really interested to find out how giving birth was for you? In terms if v.
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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