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Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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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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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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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 …

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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, …

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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 …

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Feeling so alone

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Feeling so alone

Post  Zbrown on Wed Feb 26, 2014 9:57 pm

November time after a night out with a lot of alchohal and falling asleep with clothes on tight leggings pants ect woke up to feel irritated bit sore. Now the pains worse burning sensation inner thighs vulva vagina the works Ben under bum cheeks constant burning pain any even wear pants??? No stds or yeast bacteria ect . Doctor thinks it's my imagination been shoved doctor to doctor in my gps with no real cure or help :/ blood tests clear except one which came up something with white blood cells ? Was redone and fine so was assumed ok ??? Vulva feels swollen irritated burning sex is painful had a normal sex life as never had any infections or anything very healthy normally !!!! On contraceptive pill but stopped it a month ago too see if it stopped still burni irritation only feel ok after a good nights sleep :/ so depressed would like some advice xoxoxo

Zbrown

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Re: Feeling so alone

Post  zarli on Thu Feb 27, 2014 1:37 pm

You are not alone we are all here, although we all know it can be such a lonely journey.
My advice is to do lots of reading on here and you will gather information that will help you.
The girls on here are lovely and so full of great ideas, there is many success stories with long term positive out comes.
All the best
Z

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Re: Feeling so alone

Post  Zbrown on Thu Feb 27, 2014 1:40 pm

Yeah I have been doing a lot of reading lately I haven't been diagnosed but it seems to fit. Tested for everything over last months , back to my gp today she doesn't think I need a referral to a gynocologist idk why because they don't seem to know what to ??? Iv been reading a lot of the posts which have been helpful , thank u so much. Currently burning the joys x

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Re: Feeling so alone

Post  zarli on Thu Feb 27, 2014 1:43 pm

Ask to see a vulva specialist or if you can't get that in your area, I don't know where you are, ask to see a pain specialist.
You have to keep going to Doctors unfortunately until one helps you out.

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Re: Feeling so alone

Post  zarli on Thu Feb 27, 2014 1:45 pm

I went to 3 gynos and honestly with out a word of a lie not one of them diagnosed me with vulvadynia !!!

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Re: Feeling so alone

Post  Zbrown on Thu Feb 27, 2014 1:50 pm

Oh really , I just don't know what to do I'm in a neRly 5 year relationship and the only thing I can think woul have triggered any of this is a fall on a night out or falling asleep in my clothes that same night :s even the next day the pain was only in one area now it's inner thighs tailbone vulva flip pain during sex is awful. Iv been to the local gum clinic and they said hormone imbalance possibly but I'm going more towards nerves because I sometimes feel weird sensations in my hands feet and there are always very cold :/ . ... For months I was told I had yeast inversions an chafing and all this stuff but never tested positive for anything. It's so bizarre has any methods helped you at a ??? How did u get diagnosed ect xo

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Re: Feeling so alone

Post  Zbrown on Thu Feb 27, 2014 1:51 pm

Yeah iv researched vulva specialists I am living in Northern Ireland belfast the resources seem to be limited unfortunately xxx

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Re: Feeling so alone

Post  Ceriane on Thu Feb 27, 2014 4:06 pm

I really strongly feel I should reply to this, especially as you say that you have pins and needles in your hands and feet as well as the vulvodynia. Also that your GP hasn't found a cause. You could be suffering from a condition called pernicious anaemia, which basically means that your body is unable to absorb vitamin B12 through the stomach....this leads to problems with the nervous system (pins and needles in the hands and feet are classic symptoms), tiredness, soreness of the mouth, problems with the immune system (as you say there was a problem with your white blood count).

I had it for years and it got progressively worse until I was eventually diagnosed and started treatment. I believe strongly that my vulvodynia (which was extremely painful and chronic and was basically ruining my life!) was related to this (ie nerve damage etc). If you have this condition it can become severe and debilitating and only gets worse until you start treatment. It is VERY serious if left untreated for a long time. Fortunately it is VERY treatable with regular injections of vitamin B12.

Since I've begun treatment my vulvodynia has almost completely disappeared (I still have the odd day where I get it a bit if I'm run down) bearing in mind I had it severely for years on end....another thing I have found to be helpful for the vulvodynia side of things is coconut oil (ingest one capful a day)...or drink coconut milk....it has really helped a LOT. I didn't think my vulvodynia would ever get better....but it has....

Ask your GP to check out vitamin deficiencies, especially B12, and also to see if you are anaemic. Don't take the B12 reading as face value though....there is a problem with the NICE guidelines and they may read your B12 as okay. Ask for your B12 number (anything below 400 could indicate a problem....but most GPs in the UK won't treat for it or acknowlege there is a problem unless it's below 180, some go even lower....by which time you could be extremely unwell. If it is below 400 and your GP doesn't offer you treatment, contact the Pernicious Anaemia Society (they have a website).

I really hope this helps. I just don't want anyone else to go through what I have been through with pernicious anaemia and vulvodynia.

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Re: Feeling so alone

Post  zarli on Thu Feb 27, 2014 8:32 pm

thank you so much for your post. I am anaemic and don't take vit b tablets because they make my constipation worse. I went to the doctors 4 weeks ago to get my iron checked and they said it was fine, which was the first time in years. I have heard of this before about iron. I have numbness feeling in the hands and feet they are not actually numb just feel that way, they are always cold and I have burning mouth syndrome at the start of my vulvadynia.
What should I do ??

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Re: Feeling so alone

Post  Zbrown on Thu Feb 27, 2014 8:46 pm

Thanks girls !!!! I have more a sudden coldness and pain in my hands and sometimes feet too. I have not ha a check for those tests yet ??? So far iv found a good gp in my surgery who is acctully working with me and is intrested in al this she said there had been a Similar situation of a girl who was younger than me (I'm 21) so this gives me some relief they don't think I'm crazy , he has recommended a specialist waiting on a referral could be 5 months she says so payin private I may do. But she has rescheduled an apointment for next week and has gave me a steroid cream that's the only thing I haven't had yet. So I'm glad I got on here use seem to know Lots very grateful !!! I think I will definitely ask about the b12 just to see. It's funny they all seem suprise how much i know on the situation just by talking on here thanks girls !!!!!! Xoxo

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Re: Feeling so alone

Post  Ceriane on Fri Feb 28, 2014 4:19 pm

Zarli....definately get your B12 levels tested. It is a different type of anaemia than iron deficiency, but if you have it you are likely to be anaemic as well....your symptoms sound very similar to mine. If you do have pernicious anaemia, taking B12 tablets will not help as the problem lies in your stomach....you are unable to absorb B12 (which is a really important vitamin, we need it almost as much as we need oxygen and water!) It is treated by regular injections of vitamin B12...without the injections it will not get better and can be very serious if left untreated.

I strongly feel vulvodynia is yet another symptom of this condition as I've come across so many people with pernicious anaemia that also have vulvodynia....and mine got a LOT better when I went on injections. It's just not reported or listed as a symptom very often as because it's so personal...people don't talk about it.

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Re: Feeling so alone

Post  Zbrown on Fri Feb 28, 2014 11:08 pm

I shall definty ask my next appointment hopefully going to see a specialist recommended by my gp , god bless my poor mummy she's been a blessing. Thanks girls xxxx

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Re: Feeling so alone

Post  zarli on Sat Mar 01, 2014 3:59 am

thanks so much Ceriane I am going to go to my Doctor this week and ask for the blood test, I am so hoping it is my problem.
I appreciate your posts thanks again, I will get back to you and let you know how I get on it wont be for a week or so though.
Thank you
Zbrown- good luck with your appointments and yes mums can be our saving grace Smile 

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Re: Feeling so alone

Post  Ceriane on Sun Mar 02, 2014 10:08 pm

That's okay. Hope it helps.

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Re: Feeling so alone

Post  zarli on Tue Mar 04, 2014 3:32 am

Well had my Doctors appointment and she said I had my B12 checked 14 months ago when they checked my iron and my B12 was 270. She did another blood test today but said that I don't have any sort of anaemia. I am disappointed but was very aware it was a long shot. Thank you any way. By the way what was your B12 number just for interest sake ??

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Re: Feeling so alone

Post  alessandria on Thu Mar 06, 2014 5:52 am

Zarli, I would still consider taking supplementation for B12 if you were at 270. Depending on whose guidelines you consult, some B12 deficiency symptoms can start at levels below 400. Anemia does not normally happen unless you are severely deficient (under 180), but the neurological effects are less cut and dry and can occur at higher levels. You do not have to have pernicious anemia necessarily to have a low B12, there are a lot of different things that can cause it and for most people, just taking it sublingually (dissolving a tablet under your tongue) will work to improve levels. It is worth a try!

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Re: Feeling so alone

Post  zarli on Fri Mar 07, 2014 8:25 am

I had my fingers crossed you would post on these posts Alessandria Very Happy .....Yes I have started Vitamin B12 and a Multi B as suggested by my health food place. The research I did supported every thing you said, I have been taking them for three days, my urine is bright yellow and I am awake till 3am even with my meds !!! But I have so much more energy already and a feeling of I don't know but I guess HAPPY wellness within, I know sounds weird but just feeling no brain fog, which is amazing !!!

Thank you to Cerianne who suggested Vitamin B12 to me. And thank you Alessandria I read all your posts and you are amazing to care so much for us all on here and give us such professional feed back and relevant information, I imagine you are quite time poor so it is really appreciated from the bottom of my heart. I wonder how YOUR vulvadynia is going and how you deal with it in your life ?? I hope we are of some support to you also.

If Vitamin B12 does nothing for my Vulvadynia at least its made me feel better !!!

Thank you girls and much love sent your way xxx Z


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Re: Feeling so alone

Post  EverythingIsDifferentNow on Thu Oct 09, 2014 5:58 pm

YOUR PROBLEM MUST HAVE BEEN BIRTH CONTROL. I know MANY women who have contracted vulvodynia because of their contraceptive pills and they were so confused but it messed up their bodies GET OFF OF IT

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B12 and Vulvodynia

Post  DAMSEL on Sat Nov 01, 2014 5:40 pm

Interesting, about this connection, I went to see a homeopathic clinician, I was very sceptical, and she picked up that I was low in B12, and suggested I have my bloods done. I am so confused though, because going through post menopause with classic symptoms, they include tingling hands and feet, which I have, but now you say that it can be a B12 deficiency! Can B12 deficiency have the same symptoms, I also have very bad digestive issues, can one cause the other, ie: poor digestion cause B12 deficiency, and low B12 cause bad digestion? I am a newbie to this, and spent 3 years trying to get help!

Help!

DAMSEL XX

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Re: Feeling so alone

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