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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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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 …

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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

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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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 …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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 …

Comments: 14


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.

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Re: Lyrica...advice please

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