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

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

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

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

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

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

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

» Help New Diagnosis
NEED SUPPORT..... 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!
NEED SUPPORT..... 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


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Post  Guest Sat Jan 11, 2014 7:10 pm

Hello, I'm 20 and have had vulvodynia since age 14. My problems started with yeast infections then bacterial and this lasted a good 4 months before the doctor decided to check and turns out there was no more infection but just horrible burning pain. I can't sit walk or stand for to long. I was diagnosed with vulvodynia, vestibultis, pelvic floor muscle dysfunction, and neuropathy. I have had almost every treatment including a neurostimulator in my back. I also had the biggest surgery available which is the vestibulectomy. I would be more than happy to share more about my treatments and story through email.

I would love to have a friend who has vulvodynia too so I have someone I can talk to who understands what I go through each day both physically and emotionally.




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Post  Alana3 Sat Jan 11, 2014 8:50 pm

I had a vestibulectomy too hope yours was successful!! It was the best decision of my life Smile where are you from

Alana3

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Join date : 2012-09-25

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Post  Guest Sat Jan 11, 2014 10:57 pm

The vestibulectomy took the edge off my pain, I'm still looking for a cure...I'm located in Florida. Where are you from and are you still having pain since the surgery??

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Post  Alana3 Sat Jan 11, 2014 11:14 pm

Im in florida! Where are you? No my pain is completely gone. When was your surgery?

Alana3

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Post  Guest Sun Jan 12, 2014 12:03 am

I'm in Melbourne, I had the surgery about 6 months ago.....it did help take the edge off which is a great help. I had a neurostimulator put in but due to complications it has caused more pain than help......

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Post  Alana3 Sun Jan 12, 2014 12:08 am

I have no idea what a neurostimulator is so I cant help you with that

Alana3

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Post  Guest Sun Jan 12, 2014 12:13 am

Who did your surgery?

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Post  young.sufferer Tue Jan 14, 2014 12:01 am

You will find lots of support here Smile I'm 25 and just starting to take control of my vulvodynia and try to find some relief. I have posted on this site a couple times and the response has been wonderful, we are all going through the same thing and we are all here for each other. I don't really know how to work this site, but if there is a "Private Message" button, you can message me any time. I'm here for you and I'm struggling too. I am currently looking into treating it with chiropractic care, sent out my first e-mail today. I know it may feel shameful to look for help or talk about your condition, but I think the stigma is being turned down and more people are learning about our conditions. I hope your surgery heals perfectly and that you're free from the pain.

young.sufferer

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Join date : 2013-12-05

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Post  mary jane Fri Jan 17, 2014 8:50 pm

a neurostimulator?
I thought that was AFTER you have tried all the medication possible, ketamine infusions, lyrica, narcotics///
after them the are nerve blocks I thought pain pumps and neurostim. are final treatments
mary jane
mary jane

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Post  mary jane Fri Jan 17, 2014 8:57 pm

The biggest problem is we keep bouncing back and forth on these forums and read pro and against opinions on surgeries, medication, whatever else but at the end of the day these are simply statistics!!!!!!
just because it worked for her does not mean anything !!! we have different bodies, amitriptyline works for me, but it will do nothing for the next person and so on... it's maddening
I've read so many vulvodynia stories on vulvodynia.com guestbook my head hurts !!! for some the surgery worked...but then again there are 2 surgeries at least ..one with bartholin gland removal and one without ! for some only the bartholin glands were removed and they were cured, for others no, it was nerve blocks which cured them, for others PT, for others lyrica, ad infinitum !

I can advocate all day long about medication because it works for me, but I have different symptoms and reactions to others.
We NEED DOCTORS to figure this out !!! they need to start paying more attention to these conditions
mary jane
mary jane

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