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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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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Lyrica...advice please

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Lyrica...advice please

Post  sailor_moon on Mon Mar 23, 2015 5:46 am

So out of desperation my doctor wants me to try Lyrica. I am scared to take it as I have read about the really bad side effects it has, like constant fatigue and drowsiness, and excessive weight gain . I have PCOS and am struggling with these issues already let alone having this drug make things worse....I can't afford to get any fatter, I can't even lose a single kilogram and I am on a strict sugar free, dairy free gluten free diet! If I put on any more I will be overweight for my height. Fairview ought if the medication weeks, but I have to be on it 3 months and if it doesn't work I will be even fatter and won't be able to lose it. If I am even more fatigued I am at risk of losing my job or having a car accident as I travel to work. My V symptoms are redness, itching and vestibule burning. Any advice on the matter would be very much appreciated. I have had a very bad day... I have a migraine and can't stop crying. My doctor was not as optimistic this time around...he is running out if ideas.
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Re: Lyrica...advice please

Post  BpCookie on Thu Mar 26, 2015 3:25 pm

Hello Sailor hun, I really feel for you. My advice would be to give Lyrica a chance. I take Lyrica and its the only medication that helps. You need to weigh what is most important to you, on one hand you MAY have specific side effect and on the other hand Lyrica MAY help you. If you give Lyrica a try and you don't like any of the side effects that you may get, then you can always quit taking it. If you do want to quit taking Lyrica pls. talk to your Dr. first.

Have you tried Lidocaine %5 ointment yet? When rubbed into the skin it numbs it. So it could help you.

Also, if your Dr. is running out of ideas, then find another Dr. There is always something else that you can try. Finding something to help your symptoms is very frustrating but you have to keep pushing yourself. Giving up is simple but pushing yourself to find help is hard but can be very rewarding!!

I cry off and on too but the next day I find myself putting on my boxing gloves and fighting my way through the day. I find that a great stress reliever is to find someone who annoys me and give them a quick boxing glove to the back of the head, point at my vagina and scream in their face "THIS IS ALL YOUR FAULT JERK FACE" and then walk away. *shrug* Nah, only kidding. But it would be fun to see the look on someones face if I did do that.

Hang in there honey bunny.

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Re: Lyrica...advice please

Post  sailor_moon on Thu Mar 26, 2015 8:15 pm

Thankyou Cookie. I really appreciate the reply.

I took my first Lyrica last night. Only a small dose of 25mg, as I am gradually building up my dose to 150mg. This morning I feel so dizzy and spaced out.

Can I ask what your main symptoms are/ were with V? My main symptoms are chronic inflammation and itch, with random burning in the vestibules that comes and goes.

How long did it take for Lyrica to kick in and really work?

And can I ask what your main side effects are?

Any more advice on the matter would be very much appreciated. Thankyou Smile
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Lyrica

Post  Jo44 on Thu Mar 26, 2015 8:27 pm

Hi hun

I was also scared to take Lyrica too but caved in & took them & apart from a bit of lightheaded ness the following morning it's been fine! I am over weight & was terrified of putting on more weight but I've been on it 6 weeks so far & have only gained a about 2 pounds! I'm also on Amitriptilyne too which is another drug notorious for weight gain but didn't gain whilst on that. I'm weaning off that at the moment.

To be honest it hasn't stopped the soreness I get but it helps me sleep really well, which I love as I suffered insomnia for two years!

I'm on 150mg of the Lyrica.

Hope it helps you xx

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Re: Lyrica...advice please

Post  sailor_moon on Thu Mar 26, 2015 8:38 pm

Thanks for your response Jo44,

I only tool 25mg and I feel really dizzy and light - headed this morning. I think I'll do 25mg for a week and then increase to 75mg for a week and see how I go working up to 150mg.

I am only short, 158cm. And a petite frame. I have PCOS and low estrogen and progesterone, and I am struggling to stay within a healthy weight range. I don't want to put on more weight cause I won't be able to lose it! My V is so bad I can't exercise. I eat super healthy but it's not enough .

Can I ask what your symptoms are? Do you have itching or just burning?

I haven't tried Amitryptilene. Do you think it works?
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Lyrica advice please

Post  Jo44 on Thu Mar 26, 2015 9:08 pm

Hi

Initially my symptoms were burning, soreness and redness, I then started the Amitriptyline just before Xmas, and each time I upped my dose, I had some relief ie: no pain at all, then it would come back after about 10 days or so, so again I increased them once again until I was at 60mgs by the beginning of Feb!! Then I saw my gynae, who wanted me to come off the Ami and take Lyrica and use Dermovate cream twice a day! By that time the burning had actually stopped. Now I'm left with soreness and redness. The cream doesn't seem to be helping at all tho!

If this doesn't help me then wants me to have injections in the bit just below the opening of my vagina!! Ouch!!!!

I think you're wise to start slowly, before increasing the dose. I am very sensitive to meds so thought I would have loads of side effects but haven't, but then again it hasn't helped with the soreness either. I'm going to ask my GP if I can stay on it for sleep!

Hope it helps you, it should kick in pretty quickly.

Xx

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Sailor

Post  BpCookie on Fri Mar 27, 2015 4:19 pm

Hi honey, My main symptom is burning. I don't itch but I do burn most of the time. Sometimes there is redness and swelling. My Dr. started me on 150 mgs right away and it worked right away as well. 150 mgs causes me to have dry mouth and poor concentration. Sometimes I feel like I'm in my own strange world but other times it doesn't bother me as much. You may not have to take 150 mgs, you may find that a lower dose will help you. I have 3 different mgs that I take depending on my burning pain level, 150 mgs, 100 mgs, 75 mgs. Since my burning pain fluctuates, I take the mgs that are needed at that time.

Ask your Dr. about Lidocaine 5% ointment. That will really help.

Ive had 2 surgeries, a number of procedures and pills. blah. The second surgery help me a lot and the last procedure helped also. My pain is starting to increase again so Im going back to my Dr.. Last procedure he injected alcohol under the skin in order to kill the nerve endings and it helped for about 2 months. I may have to have multi procedures.

If you have any other questions feel free to ask.

hugs
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Re: Lyrica...advice please

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