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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


New girl from Nottingham

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New girl from Nottingham

Post  chachi on Mon May 09, 2011 1:13 pm

Hello All

I have passed through this forum so many times & never become a member so today I thought I should.

I wondered if anyone else gets intense pain and soreness in their legs? For me, it feels like my skin is red raw & sort of itchy and prickly on my buttocks & vagina but mainly down the back of my thighs which is basically the bits of me that make contact with a chair! I haven't read anyone else mention this particular symptom so I wonder if it's something different to vulvodynia?

I know that I have vulvodynia, I have had it for about 6 years now. I did the usual two year trip around the medical disciplines before I landed back in gynae. I am currently taking amytryptilene (spelt wrong!) which does work but I still have break through pain. I am on 10mg a day or 20mg if It's really painful at night, I really could do with upping the dose but it makes me feel like I'm living in a cotton wool cloud as it is & it gives me the most AWFUL nightmares every night I feel terrible every day on waking just from the bad dreams. I would ideally like to stop taking it but I really dare not stop. I have tried all the other usual stuff too but that just made me a dribbling mess!

Anyway, thought i'd say hi.

Keep on keeping on ladies Surprised

chachi

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Re: New girl from Nottingham

Post  Sarah001 on Mon May 09, 2011 7:51 pm

Hi Chachi and welcome! The area of prickliness you're describing sounds more like the sciatic nerve to me, it runs through the buttocks and down the back of the leg and usually causes odd sensations as far as the knee but not lower but of course there are always exceptions to the rule. It doesn't supply the vulva however there are muscles that can press on both the sciatic nerve and the pudendal nerve which does supply the vulva, the piriformis is one trouble maker for both and the pelvic floor another. Tightness of muscles around he sit bones could also do the trick, I think a physio appointment if you haven't had one would be a good idea. They may send you for an MRI too to check the disks are ok in your lumbar area, been there done that *sigh*!

Anyway glad you joined us and welcome again.
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Re: New girl from Nottingham

Post  noni on Tue May 10, 2011 1:26 am

Hey Chachi,

I can relate to your mention of odd sensations on the upper thighs. I get prickly or strange sensations where it feels like drips of water on my upper thigh Bizzzzare.

Anyways, Like you, I have found that Amitriptyline is the ONLY thing that has come close to taking the edge off pain. I am on 50mg but I could also go higher...and then go into la la land forever.

I actually went through my prescitption too fast and the Pharmacist was hesitant to re-fill my Ami. Well, what can I say...pain is pain.

Anyways, take care.

oh and welcome.

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PNE misdiagnosed as Vulvodynia?

Post  chachi on Tue May 10, 2011 10:41 am

Hey noni & sarah,thanks for your replies. This is really odd actually but since reading sarahs reply I have done a little searching and I'm pretty damn sure I have been misdiagnosed! I think i have PNE it's actually like reading a text book on my symptoms. Apparently, it is often misdiagnosed as vulvodynia as there is vulval, clitoral and rectal pain with both. The tell tale sign with me though is the pain in the backs of my thighs, it's unbearable at the moment to sit down or having anything touching my thighs at all. How are we all supposed to carry on working thats what I'm thinking?! If i take the amitriptyline (which i do) I'm out of reality for most of the time and don't feel like i've got my head in the game, if I dont take them I'm in so much pain I need to spend the day laying down. It makes you grumpy being in pain all the time to.

Sometimes, I'll be honest, when I look to the future & imagine this pain for the rest of my life......I wonder if I can handle it. Also, I'm 37 & really want to have a baby ASAP but i'm terrified of the thought of 9 months and no amitriptyline, I'll have to do it I know but it's a horrible thought. Then i get to thinking....how will I be able to work if i'm pregnant and have no pain relief?! Anyway, rant over It's nice to know that you guys are out there and know exactly what I'm talking about.

I'm waiting for an appointment to come through for the specialist anyway so I'm going to take it up with him.....fingers crossed (deffinately not legs as it hurts!)

take care Very Happy

chachi

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Re: New girl from Nottingham

Post  noni on Fri May 13, 2011 3:07 am

Im on the path of healing rather than curing, at this point anyways.

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Re: New girl from Nottingham

Post  itchyandscratchy on Fri May 13, 2011 3:53 pm

Yeah I get that prickly feeling sitting on a chair, not as intense as you're describing though, and not as far down as my thighs, mainly just around the ass area...

*sets off to google PNE*
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Re: New girl from Nottingham

Post  Sebby (Admin) on Sat May 14, 2011 9:34 am


Welcome to the forum...deff do some research yourself. Im sick of doctors misdiagnosing either that or telling me its cos Im anxious!

I'm on Pregabalin (anticonvulsant) 300mg and for the first 6 weeks I did feel like I had started the day with a bottle of whiskey! The side effects have pretty much gone now and I have had relief from the more severe pain.

As for having a baby, yes I worry that if I was pregnanat how would I cope with no pain killers but to be honest if you really want one I believe that desire will give you the strength you would need to get through. Also I do wonder if being pregnanat would effect the symptoms? I mean my worst flare ups are just before coming on my period or just after so 9 months of no periods would suit me just fine lol

I also agree with seeking healing rather than focusing on cure.....even if I was never completley cured I would be happy just to have long term relief from the severe flare ups even if that meant I still got low level pain


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Re: New girl from Nottingham

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