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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: 1

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: 8

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

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


My Story- my pain and my advice about possible options for pain

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My Story- my pain and my advice about possible options for pain

Post  jules on Thu Mar 25, 2010 1:12 am

hello, I am a 44 year old woman who was just diagnosed w/ generalized Vulvodynia on 12/31/09. For those who may not know...generalized Vulvodynia involves pain all over the Vulva. Like everyone else, I was treated for six months for yeast infections and bacterial infections I did not have. For me it only took 5 doctors to give me the correct diagnosis. Today I have seen a total of 8 doctors. My final diagnosis occurred in Rochester, MN at the Mayo Clinic. Lucky for me...I only live about an hour and 20 minutes from the Mayo. I have researched this disorder for months. I have been online, meeting with doctors and reading books. After, months of horrific burning pain to the point I couldn't sit, had to leave work early and used cold gel packs up to six times each day, I have some relief. The only medication I have been put on for this disorder is Neurontin (nerve blocker). My docs started me out at 600 mgs....I am now taking 3000 mgs. Like everyone else, I have tried every cream and ointment under the sun. ALL completely irritate my skin. I even tried natural oils etc.

I have decided I will not give up until I find more relief. I went to a holistic doctor not covered by insurance. He ran a battery of tests on me and found me to be deficient in some vitamins...and to have a low thyroid. I am giving myself vitamin B12 shots every three days, taking a number of vitamins and hoping. This doctor referred me to a allergist in LaCrosse, Wisc. The allergist is known all over. His focus is allergies and women's issues. I have read at least one research study that suggested there could be a connection between Vulvodynia and allergies. They just don't know. That appt. is in May. Both my holistic doctor and my Gyn recommend that I cut out alcohol, sugar and caffeine. My holistic doc doesn't want me to have sweetener either. At this point, i have not cut out these foods/drinks....I gotta have some fun.

In the meantime, I am trying conventional methods. I have two foam donuts I sit on. One is at work and one is at home. I ordered them online at a medical supplies store. I recommend them. They help avoid direct pressure on the Vulva that we normally get when we sit. Also, I asked my GYN for a referral to a pain clinic. I HIGHLY RECOMMEND YOU ALL GO TO A PAIN CLINIC TO MANAGE YOUR PAIN. This is a recommendation the vice president of the National Vulvodynia Association gives. That is the first place one should go. I went there to have a nerve block. Now, nerve blocks are iffy as to whether they can help take the pain away or not. My GYN told me it has helped some of her patients. The doctor I met w/ told me he has seen many women w/ Vulvodynia and that blocks can help. He also told me this is a very difficult disorder to treat. I had the first block one week ago today. I don't think I have noticed a difference. I have another block scheduled in one week for a nerve a little higher in the spine than the last. There is pain involved w/ the blocks..but, if it works it is worth it. I was told I will then likely have one in 3 months, six months and one year and maybe done. I also will be referred for physical therapy and my guess is part of that will be biofeedback which some of you may have read about in the book 'THE SURVIVAL GUIDE FOR VULVODYNIA" Oh, for those of you who have the Vestibules Vulvodynia alone...I would look into surgery. I am told there is a 93% success rate in relation to pain. I am not able to have the surgery as my pain is all over.

I will keep you updated on how the next block goes. Thanks for reading.... you are not alone and we can make it through this.

jules

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Re: My Story- my pain and my advice about possible options for pain

Post  Sebby (Admin) on Thu Mar 25, 2010 9:27 pm

Hi and thanks for sharing your story.

I have a soft cushion that I use at work but I have thought about using a doughnut especially at home when im on the computer. I will get on Amazon and order one! When Im sitting on the sofa I tend to sit sideways so Im not putting pressure on my Vulva. Its amazing how many different ways you find to sit and then end up with a dead leg and achy back!
I was wondering about allergies and Vulvodynia as I have very senstive skin anyway. I can only use certain products on my skin and can only use non-bio washing powders. I also have to wear cotton only white knickers. I am prone to rashes and skin probelms anyway. I also suffer terribly with hayfever so am very prone to allergies.
I had not really thought much about food and drink but I have begun to try to cut down on caffine. I have had a stomach acid problem for a few months now so have to be careful what I eat anyway.
I think the pain clinic advice is very good advice, I will speak to my Gynea about that so let me know how the nerve blocker works for you.
Thank you so much for your advice it all helps and I wish you all the best in your recovery.

Sebby
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