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

» Social Security Disability Benefits
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 …

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

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: 5

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

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


I'm new here, I'm so scared :( looking for girls who are new in this

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I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Wed Dec 02, 2015 7:28 am

Hi everyone, I'm from Poland, I'm 28 and I think I have vulvodynia. It all started with a bacterial infection. There is no infections anymore and I'm still suffering, painfull bladder and painfull vulva, it lasts already 8 months. Hard to get any support in Poland, hard to get to a good doctor... I am so so scared, that I will suffer for the rest of my life, that I will end up alone, no man, no children, just misarable life, I'm so scared if I tell my partner - he will leave me. I can feel only a strong anxiety now, I'm week, can't eat. I'm afraid of vaginas sex, I can have it, but after I feel terrible and so much worse. I'm afraid of depression also, because I don't know if I will be able to fight it. I will be glad and happy to talk to somebody here, has anyone here got vulvodynia after a long infection and taking many medicines?
Kiss
Ewa

Ewa

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Wed Dec 02, 2015 4:49 pm

Have you tried eliminating all potential problem foods and drinks from your diet like caffeine, alcohol, chocolate, artificial sweeteners, citrus fruit and juice, vinegar (basically anything acidic or bladder/urethra/vulva irritating)? Some people find a low oxalate diet helps. If you search low oxalate diet you can get a list of high oxalate foods to avoid.

Simple changes to washing detergent and soap can sometimes help too. Avoid all fragranced soaps and washing powder on your clothes. The same with toilet paper and sanitary towels - use unscented ones.

My problems also started with a urine infection and thrush infection. It seems to be quite common that vulvodynia starts with a simple infection which clears up but leaves pain behind.


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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Wed Dec 02, 2015 5:55 pm

I'm using soap for babies, cotton underwear, not tight trousers, only fresh water for cleaning etc. About low oxalate diet I just read and started few days ago, but I guess it needs more time. Do you know about any herbs or suplements that might be helping? Is it any better with your problems? How long are you suffering?
Kiss

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Wed Dec 02, 2015 9:19 pm

It's best to persevere with the low oxalate diet for at least three months. I didn't find it much help, but I also have muscular issues (tight pelvic floor muscles) contributing to my pain. I've had the problem for 17 months now, but not as bad now as when it first started. Cutting out acidic foods has helped reduce frequency of the burning I get after emptying my bladder.

I've read that aloe vera capsules and marshmallow extract can sometimes help with a painful bladder. I haven't tried marshmellow extract. I tried aloe vera but only for a month. I think I need to try it again for longer.

I hope you find something that helps you.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Thu Dec 03, 2015 3:55 am

Do you also have a worse and better days? I don't know how to handle it when it's getting worse again. I'm just overwhelmed by stress. Thank you for advices.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Thu Dec 03, 2015 10:57 am

I definitely have worse and better days. On the better days, which now are about 50% of days, my average pelvic pain is 1/10 or maybe 2/10. On the worse days (about 25% of days) it is maybe 4/10 going to a maximum of 6/10. (I rate my pain quite conservatively as I also have a chronic sensitization syndrome which affects most of my body not just vulvodynia. To my way of thinking, nobody could remain conscious with a 10/10 rated pain, so when people say their pain is 10/10 I'm sceptical.) On the other 25% of days it is somewhere in between.

It is very stressful to have any persistent pain. Vulvodynia is even worse because it's in an area of the body that it is difficult to talk about with people. For example, all my friends know I have back/neck/leg/head pain. But many have no idea what I have been suffering with vulval and urethral pain. I think it's important to be able to talk with a partner or trusted friend about how you feel. Even if they can't fully understand because they haven't experienced it, it can be good just to talk about it.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Thu Dec 03, 2015 4:00 pm

My scale of pain is from 1 to 4, one is almost perfect, 4 is hard to stand, past two months I had 2 everyday. Today my pain is 4. I had this problem for eight months now, and I already don't remember my old life Sad Do you think your pain will gone completely one day? Will it be perfect like it was? Or for the rest of our lifes there will be something wrong there... Sad I had headaches also, migraines. I tried to talk with my mother and sister, but everybody has some problems and that their problems are the worst...

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Thu Dec 03, 2015 4:53 pm

I also find it difficult to remember what I felt like before this pain started Sad . I'm not sure I believe I will ever be completely cured of it, but I do believe it will be better than it is now. I have to believe that or I would get too depressed. The pain specialist I saw in the summer said that neuropathic (nerve) pain often goes away after a couple of years. So I think ahead to summer 2016 and really hope that by then it will be mostly or completely better. Many people do get completely better - but once they are better they don't visit websites like this one, so the messages on websites like this will always be skewed towards the negative because most people are posting messages to ask for help or share advice. Try not to be too discouraged when you read about people that have had the problem for a long time. It doesn't mean that you won't ever get better. (I know it is difficult not to get depressed. I've had some really miserable days.)

The worst thing, for me, is the disruption it causes to my life: if it hurt but I could still do everything I wanted to do then it would be easier to cope with. I just want to be able to sit on a chair for more than two minutes without having to take a giant foam cushion everywhere(!) and I want to have a full relationship with my husband again.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Fri Dec 04, 2015 3:14 am

Have your other pains also started at the same time as vulvodynia? Are you able to have sex sometimes? Without suffering after... I think it would be easier to stand if I were single... My partner keep telling me that he will wait, that he is patient, but he also thinks that I am panicking too much... I'm sure his patience soon will be over.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Fri Dec 04, 2015 9:02 am

No, I had my other pains for over a year before the vulvodynia, and the headaches for years. Sex - no, it's just not possible at the moment. Luckily, I have a very supportive husband. Communication is very important. If your partner loves you and is the right person for you then he will support you through this. It may not be easy - he's bound to get frustrated and impatient at times as he is only human - but talking about those feelings is important.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Fri Dec 04, 2015 7:12 pm

What kind of headaches do you have? Migraines? I read that women with vulvodynia suffer also for migraines... What is this other pain feels like? I am trying to be very honest to my partner, telling everything, I guess if he leave me it won't be my fault.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Sat Dec 05, 2015 3:48 pm

Migraines, yes. My whole CNS is pain sensitized.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

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