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» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

» Newbie and feeling helpless
Thu Jul 12, 2018 6:35 pm by emalita

» Using dilators
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» Hello. In Need of Advice, Please and Thank You. Long Read.
Sun Jul 08, 2018 3:58 am by cg1991

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 …

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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 …

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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: 1

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: 5

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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0


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.

zarli

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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 !!!

zarli

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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

Zbrown

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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 ??

zarli

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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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