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» Honey decreased my pain considerably!
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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.
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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 …

Comments: 9

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


Vulva Specialist Given Up!

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Vulva Specialist Given Up!

Post  Sarah001 on Mon Dec 12, 2011 6:26 pm

As some of you know I've been seeing a Vulval Specialist who is also a Vulval Dermatologist and I've been back today for an update, my medications aren't working well despite being on nearly the full dose of Lyrica and 50 mg of Ami and she's admitted she doesn't think she can help me anymore. Apparently if meds are going to help they normally do so at much lower doses than I'm on and if they don't help she refers people elsewhere. Because I have a joint condition that affects pelvic stability she has decided to send me on to a gynae who has a team of vulval specialist physios working with him. Unfortunately it means I have to travel alot further which will require me to get a lift from someone (don't know who I can talk into that!) and I still have my appointment next week with a WH physio who is a bit closer to home so I'm feeling good in one sense that I'm going to get more help but terrified at the same time that I'm going to prove beyond anyone's scope because of my other problems. I told her I didn't think meds would help me but wanted to give them a try and she basically said she'd never seen a case as severe as mine that was also so resistant to medication which is scary. Fingers crossed someone out there can help me and I'll update when I get my appointment. Feeling a bit scared right now! pale
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Re: Vulva Specialist Given Up!

Post  skippypie23 on Mon Dec 12, 2011 8:03 pm

I'm so sorry Sarah Sad I've had so many doctors just misdiagnose me or say they don't know what I could have and give up, so it's at least a positive thing that you have been able to find some actual specialists.

I was thinking that perhaps medicine may not be the way to go for your body, and that you should look into some possible natural cures along with physiotherapy? I am currently looking into the raw food diet (a little harsh i know) and the yeast diet. It may have to do with your body's acid levels or your reactions to different foods. I'm actually going to try getting a food allergy test to see if I am allergic to yeast or anything else. I don't know if you have already considered these things.

Please don't give up; we shouldn't have to live like this or put up with it at all Razz


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Re: Vulva Specialist Given Up!

Post  lolainslacks on Tue Dec 13, 2011 12:02 am

I'm so sorry Sarah, that must have been such a blow to hear. Do not give up though. Just because this one person doesn't know how else to help you, doesn't mean there isn't anyone who can. I know this may not be a helpful suggestion, but have you tried acupuncture? I haven't yet ztried it but at my last gyn appointment she suggested it as an option. She told me that apparently there are many women who have been completely cured by acupuncture. I know it seems like an impossibility, but it's worth looking into I think. Wishing you all the best.

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diet

Post  Melissa777 on Tue Dec 13, 2011 2:59 am

you know- i think diet elimination is KEY
I tried the yeast diet for a year- did nothing for me

so im starting to think- this isnt yeast related, its pH related. I think the raw food diet makes sense... but its hard- start out slow and do it in baby steps

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Tue Dec 13, 2011 12:26 pm

I came out of the appointment thinking at least I'm being referred on but on the way home started to worry about what if the next person can't help me either? Pain meds were supposed to be a last resort for me that I got talked into trying earlier because of the amount of pain I'm in so it's like I've had the rug pulled out from under me. Some of you members who've been here a while will already know about my other complications and diet isn't going to give me new ligaments so diet just isn't the answer for someone like me, I've already done the low ox diet with no help and the anti inflammation diet too which works on the principle of removing acid from the body and that didn't help either. Mine's definitely musculoskeletal and revolves around the pelvic problems I've had for many years and obviously an unstable pelvis along with a pelvic floor hanging on for dear life is going to be difficult if not impossible to rectify because treatment for one makes the other worse. I'm literally pinning all my hopes on the new physio I'm seeing next week (snow permitting) which means if she sends me on my way I'm going to be devastated. I'm sure my resting tone is up again because I've had the worst year of my life and so much stress I'm surprised I'm still ploughing on every day. It's a very worrying time and I can feel depression lurking over me.
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Re: Vulva Specialist Given Up!

Post  naomi on Tue Dec 13, 2011 5:47 pm

sod that sarah! theres no way we can give up now...we've come too far!!

I know its a blow when they pass you on to a new specialist. I think after my 10th I was thinking "shite!" but if I dont keep plodding onto the next then theres just no point in fight it and trying to get better.

have u spoken to alana (not sure what alanas nickname is on here, or if she is still on here re: ketamine. she uses this orally (i think) and has given her so many more days of less pain. She said its not the answer but is helping so much with pain relief.

hope ur ok chick! xxxxxx

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Fri Dec 16, 2011 5:47 pm

I'm crossing everything the new physio I see next week will be good, she's had some rave reviews from various people I know but none of them had V so we'll see. Nervous...
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Re: Vulva Specialist Given Up!

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