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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Hello!

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Hello!

Post  Hoping23 on Thu Aug 26, 2010 7:32 pm

Hello everyone,

My name is Hannah and I was diagnosed with Vulvodynia a couple of months ago after 2 1/2 years of doctors/hospital appointments including swab tests, ultrasounds and a laparoscopy! Nothing was found and eventually thank god I got sent to the dermatology clinic and have finally (after i made my own diagnosis ages ago) been confirmed with Vulvodynia.

It's feels like such a relief to have an official diagnosis and i've been started on Amitryptiline the antidepressant which suppresses nerve messages (or something like that) unfortunately my repeat prescription is for such a small amount and im now upto 50mg a night (5 tabs) i've not been able to get to the docs for over a week to get more - so annoying as my 3 month hospital check is mid September - I noticed a small improvement on 4 tabs but it still hurt during sex.

Generally i would say i have got off lightly with the condition, i only have the pain on initial entry (and the first few thrusts) of sex and if i don't think about it we can get away with it after that. I have none of the pain that ladies suffer with constantly and have managed to avoid vaginismus (sp?) by making myself relax although i might have a touch of it too.

It still sucks, i'm newly married, 23 and this condition occurred out of the blue! Luckily me and my husband had been together for 4 years when it first started, tho i can't remember when that was exactly, so i've been able to test treatment methods such as lidocaine cream etc. i can't imagine what it must be like for someone not in a relationship already who wants to be in a sexually active relationship, it makes me feel sad to think about it.

Anyway, this turned into a bit of a long one, thanks for reading,

H x


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Re: Hello!

Post  Sarah001 on Thu Aug 26, 2010 7:38 pm

Hi Hannah, welcome aboard! You're right you have got a nice mild case, well not nice but mild anyway! I'm on the Ami too but I have constant pain and inflammation and sex is out of the question even with the Ami. Have you had your pelvic floor professionally assessed in those 2 and a half years?
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Re: Hello!

Post  Hoping23 on Thu Aug 26, 2010 8:04 pm

No - what does that involve and who should I ask to do it?

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Re: Hello!

Post  Sarah001 on Fri Aug 27, 2010 10:10 am

You need to see a women's health physio that uses a biofeedback machine and they get you to insert a vaginal probe then hook you up to the machine so they can see what's going on. The important part is the resting tone, the pelvic floor should be nice and relaxed when you're not doing anything and the reading should be about 2 on the machine. Mine was a whopping 20 so my pelvic floor isn't relaxed at all and the kegels I was doing to try and help myself were making things worse. You can find a WH physio by searching online for your area but do call them first and ask if they have a biofeedback machine.
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Re: Hello!

Post  Sebby (Admin) on Fri Aug 27, 2010 3:29 pm


Hello and welcome Hoping.

Hope you find the boards usefull..these girls have fantastic advice to give!

I find my vulvodynia is sometimes mild and sometimes bad..so it depends really

I hope and pray that yours gets betta

Godbless

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Re: Hello!

Post  jules on Sat Aug 28, 2010 11:43 pm

welcome! you will learn a lot from us. we are all quite knowledgeable. Ha ha! we are a nice network of women who are there for each other, which i thoroughly enjoy. it is nice to have a diagnosis finally after running from clinic to clinic. although, when i received the diagnosis, i was devastated thinking i would have horrible pain forever. i have learned that there is much that can be done to help reduce the pain. sounds like you have vestibules vulvodynia. i have generalized Vulvodynia (pain all over the vulva-red burning hot pain, at that). so sorry you have to deal w/ this at such a young age. for some people, it just disappears one day (I have read). what country do you live in? I'm from the United States...Minnesota. I have never heard of a woman's physio. Sarah001, is that like a physical therapist?

as a very last resort, in your situation, they can do surgery to remove the skin in that one area (entrance of vagina). i had a consult at the Mayo Hospital in Rochester, Minnesota (world renowned). they didn't recommend surgery because my pain was all over..however, i would have considered it if i had what you do. the rate of success is very high.

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Re: Hello!

Post  Sarah001 on Sun Aug 29, 2010 6:47 pm

Yep a physiotherapist here in the UK is what you call a Physical Therapist. Wink
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Re: Hello!

Post  Hoping23 on Mon Aug 30, 2010 5:22 pm

Well i've got my next hospital appt 21st September so I'll speak to them then about the biofeedback thing, I also read in one of the threads on here about a pelvic floor educator so i might have a look into them! I've taken some notes off here to ask about - and finally got my prescription of 50mg tablets so one packet of Ami should now last a month, at least it's better than taking 5 a night!

I have had an ok experience with the Lidocaine cream too (other than the initial mega itchiness!) however last time we used it I completely numbed my husband lol!

I've read about the surgery and it is something I think I'd be willing to try as I also have heard there is a high success rate - it's just a bit of a scary thought slicing and stretching my skin down there - i think if i was to go for surgery it would probably take another couple of years to get through the hospital system anyway!!! I wish I was private really then at least i might get a quicker response but I do think I've got a good doctor now who seems to know plenty about the condition!

H x

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Re: Hello!

Post  Sarah001 on Mon Aug 30, 2010 6:20 pm

God I know that feeling, I really could do with a windfall so I could do all these things privately! I'm assuming you're UK based so you're right, it would be several years before the NHS would even consider surgery as an option.

The pelvic floor educator is really good, just make sure you get assessed first so you don't do what I did and do the wrong amount etc with it. Don't be surprised if a doctor doesn't know anything about biofeedback, a GU consultant I saw knew it was a recommended treatment for vulvar issues but a vulvar specialist didn't! The only person who can give you sound advice about it is a women's health physio and only after testing you on a biofeedback machine to see what's going on.

Keep trying things and good luck on the 21st.
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Re: Hello!

Post  jules on Mon Aug 30, 2010 11:25 pm

Interestingly enough, i had an appt. set up for surgery right after i got the diagnosis.. the difference between the USA health care system and UK.

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Re: Hello!

Post  Sebby (Admin) on Tue Aug 31, 2010 6:48 pm


Yes the uk system sucks!

I have just compiled a list of womens physios in London/Essex and will do some ring rounds to see if they have treated Vulvodynia before and to check costs.

Most seem to be in Kensington....the post area of London! Not suprised really I will ring local ones first

Thing is im awaiting nerve block etc and im not sure about pursuing several treatments at once as how will I know which one works? And of course both mite work at same time..its a little confusing Neutral
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Re: Hello!

Post  Sarah001 on Tue Aug 31, 2010 7:25 pm

If I was you Sebby I'd do the pelvic floor retraining first as a tight pelvic floor can irritate the nerves so releasing it might make the nerve block unnecessary and a pudendal nerve block is quite invasive if the online info is correct. Besides as long as you got better it wouldn't matter what had worked, if it was the nerve block you'd know after a period of time because they don't last forever. Get phoning and get your pelvic floor checked out!
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Re: Hello!

Post  Sebby (Admin) on Tue Aug 31, 2010 9:00 pm


Yes I think I will! might as well.

I will still get nerve block as otherwise I could be wating many more months for appointment back to pain clinic

I guess after a while of pelvic floor training I can see if im ok without the nerve block.

Cant hurt to train the pelvic floor anyway
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Re: Hello!

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