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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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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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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


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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