Vulvodynia Support
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» Hope to all my suffering ladies
Hi I'm just over this feeling ... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Hi I'm just over this feeling ... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Hi I'm just over this feeling ... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Hi I'm just over this feeling ... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Hi I'm just over this feeling ... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Hi I'm just over this feeling ... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Hi I'm just over this feeling ... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
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» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Hi I'm just over this feeling ... 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 …

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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  Louise Thu Jan 27, 2011 8:36 am

Hi, I'm new to health forums but am very relieved to find this site.. I am 28 yrs old from Perth Western Australia and my pain started a last year in June 2010 around this time I had numerous doctor consoltations where I was prescribed Canesten and other oral medication for thrush as well as antibiotics.
I finally managed to secure an appt with Gynecologist around November last year however he recommended for me to see another Gynecologist that apparently specialises in nerve pathways in this area... however after I had been given the run around for so long and being told I couldn't see her for months I gave up. My next appt is at the start of March which I'm really looking forward to.. I feel helpless a lot of the time and it's hard because I don't know when I'm going to get the horrible intense burning sensation next, I feel like a terrible girlfriend as I avoid sex it hurts. I was wondering if it was common to see protein in your urine when you have Vulvodynia as at times I see white flecks?
I hope we all get better soon, I wouldn't wish this on anyone.


Louise

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Join date : 2011-01-27

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Post  Sarah001 Thu Jan 27, 2011 12:39 pm

Hi Louise and welcome. Don't worry about the white flecks in your urine, everyone gets those whether they have vulvodynia or not. Funnily enough that was something I wondered about in the early days too but after alot of research I found it was completely normal and men get white flecks too so nothing to do with vulvar pain.
Sarah001
Sarah001

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Post  noni Thu Jan 27, 2011 3:51 pm

Hey Louise welcome!

You have come to the right place for support and advice.

Yeah...I wouldnt wish this on my worst enemy...its a challenge. And worst of all this infiltrates every aspect of your life, self image, and well being.

Hang in there...

I have a website you can visit for additional info...

www.livingwithvulvodynia.ca

If you guys have further suggestions for my website feel free to comment.

And no....I am not selling anything on there, its just advice type stuff.

thx, much love
noni
noni
noni

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Location : Ontario

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Post  Sebby (Admin) Thu Jan 27, 2011 8:13 pm


Hi Louise and welcome

Have a look around the forum as there is a lot of useful information on different treatments and theories etc...

I do hope you have more sucess at your next appointment.

I get so fed up with being passed around like a rag doll cos the drs dont know what they are doing..it really makes me wonder if Vulvodynia is even touched upon in their training!

Ive not noticed white flecks in my urine but maybe its cos I dont look lol...

Take care and I hope you find the forum a source of support

Sebby
x
Sebby (Admin)
Sebby (Admin)
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Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Mouse Thu Jan 27, 2011 9:27 pm

Hey Louise and welcome, no one wants to find themselves looking for one of these forums but here we are all the same Smile

You will find a wealth of knowledge here and can also ask anything. There's nothing that makes a Dr stutter more than direct questions about awkward stuff. Has anyone suggested a referral to a vuval clinic? There must be one at King Edward (I had my babies in Perth - not there though).. owww I googled and found their guidelines for treatment. Interesting that they recommend physio before ami, I got the drugs first. We have all had varying levels of success with drugs, I'm not a great candidate but others have found them helpful. A physio who specialises in the pelvic floor is a good idea as well then you can find out what your pelvic floor is doing/or not doing. I'd recommend a woman, it's a level of awkward I wouldn't want to share with a man!

http://www.kemh.health.wa.gov.au/development/manuals/O&G_guidelines/sectionc/7/c7.8.pdf
http://www.lifecare.com.au/allied-health-services-womens-health.html
http://www.lifecare.com.au/findcentre.php?page=centres_wa
http://www.vulvodynia.com.au/cv.html

Sometimes you have to find the answers yourself, I did, my gyny was useless. All those years of med school don't guarantee they paid attention in the vulval class. Finding a vulval pain specialist is probably the most helpful thing. I found mine at the vulval clinic at National Womens in Auckland. My womens physio, across the road from my house - awkward! Oh that's the most used word in my vocab now.

When you have a chronic pain condition (which vulvodynia is) waiting months for an appointment is bloody impossible. Get googling and see what you come up with. I'd also recommend finding a good therapist, it's a lot to deal with. When it was suggested to me I was bloody furious but she's turned out to be the person who has helped the most. Doing this every day can be soul destroying and unloading in a safe environment helps a lot. Mine is a sex therapist so has specific knowledge. I tell people she's my pain therapist though Smile

We're also on FB. It's a private group, only 16 of us but it's great to see we are just normal people with pains in our hoo-ha's. Email Sebby if you want an add.

Good luck hon and feel free to ask questions. I've been doing this about the same length of time you have and it's hard not to let it take over. It's also bloody hard to act "normal" but I don't know WTF normal is so that helps Smile

Take care
Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  Louise Fri Jan 28, 2011 2:01 pm

Hello, I just have to say a HUGE Thank you for responding to me I feel like my spirit has lifted already! Just to let you know I recieved a phone call this morning advising me that there has been a cancellation at my gyno's and I am going next week!!(perhaps the receptionist did feel sorry for me when I was in tears the day I called to make an appt afterall?..)

I finally don't feel alone and I've just told my mum and boyfriend about this group and all of the lovely kind words/ advice you've all given me, I also told one of my girlfriends but I'm convinced she thinks I'm a hypercondriac haha great...

Vicki you are too kind I actually feel like I want to cry thank you so much for sending the link to King Edward it's so strange I've actually been saying to my mum "I can't take this anymore I just want to rock up to King Edward hospital and beg someone there to help me" I'm definately going to try one of the gynos at King Edward next. My mum knows a good male dr there but I am a bit put off going to a male gyno, the last one was nice and referred me to another gyno who specialised in nerve damage etc but this last gyno said that I should "finger myself in the shower" I was so embarassed I couldn't even repeat to my mum what he said and its only just recently that I told my boyfriend about it (should that be reported?), that gyno kind of made me feel like I was imagining the pain in a way (glad I got that off my chest)...if this appt next week isn't successful I will definately look into the King Edward option for sure! It's so expensive going to all these appts as well..

Sarah thanks for letting me know about the white flecks..I never noticed them until the burning started,I appreciate that. Thank you Noni and Sebby for all of the info you have put my mind at ease. I think you are all angels Smile

One last question the last time I used canesten it burned like crazy, I think it made my situation worse is that normal for Vulvodynia sufferers?

Having to deal with this has made me appreciate how important your health is and not to take anything for granted, that all you can really ask for in life is good health.

Love x









Louise

Posts : 10
Join date : 2011-01-27

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Post  Mouse Sat Jan 29, 2011 12:35 am

Hey Louise,

I am so glad you got an appointment and truly hope this specialist knows what to do. Sometimes gynys are more your general mechanic and you may need a sub specialist but it's a great place to start.

My gynaecologist was treating me for something else and the pain triggered after surgery. She just said she didn't know what it was - end of story. I would have suggested opening a book but she wouldn't give me an appointment. So I used Dr Google, diagnosed myself on the internet and found my new improved specialist on my own. She's fab! To my surprise my GP was fairly knowledgeable as well, that little gem of information could have saved me months of anguish.

I wouldn't get too worried about the fingering advice. The shower is relaxing and dialators are commonly used to expand the area - it's kind of the same concept. So don't freak out too much, maybe he didn't explain it that well. I much prefer a female "anything" this thing is so bloody awkward it's not funny.

I know what you mean about friends not getting it. One of mine said I thought you were ok now, because I'd had a few painfree days before Christmas. Even my husband can be a bit dim, these holidays have been quite stressful because he's wanted to be out doing things and I just can't. I gave him an article on chronic pain I found lurking in my handbag yesterday. He's got a whole new understanding now.

http://www.mindfood.com/at-chronic-pain-ruling-life-health-body.seo

I have generalised unprovoked V which is a wee bit different, I don't get it but thrush is very common for people with vulvodynia.

Check out the links, this is the same info my specialist gave me.

https://netforum.avectra.com/temp/ClientImages/ISSVD/4c9d4ec4-2e90-4a81-9a36-8467863002f4.pdf
https://netforum.avectra.com/temp/ClientImages/ISSVD/4bdef72c-ba47-4279-ad43-9e3d33bcc7f5.pdf

Cheers Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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