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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 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

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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

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


My story: Please help and thank you for this site!

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My story: Please help and thank you for this site!

Post  jmcmil on Sat Jul 07, 2012 3:29 am

I am 36, almost 37 yrs old. I reconnected with my high school boyfriend from 20 yrs ago and we had a sexual encounter and he was very rough and I bled afterwards. It had been 3 yrs since I had had sex with anyone and I am tight in the vaginal area. That’s when my nightmare began. This was last Thanksgiving (Nov 2011), 7 mos ago and I haven’t been the same since. I had pain afterwards that never went away. I went to my gyno and was tested for STD’s, all negative and I had a biopsy of skin which revealed lichen schlerosis. I was tried on a variety of steroid creams, even a compound cream and none of them took the pain away. I was prescribed Amitryptaline 50 mg at night. I tried over the counter Candula cream, Cortisone cream, and a variety of others. My pain is a burning sensation all of the time. I then went to a dermatologist, which he gave me a steroid shot and some more creams, none of them relieved my pain. He would hardly even look down there and acted embarrassed. At times I felt like the creams helped, however other times the creams did not relieve the pain and the burning continued. I then went to a gyno who specialized in vulvodynia 3 hrs away to be diagnosed with generalized vulvodynia. I had to fight back tears because I had researched the diagnosis and I did not want to hear it. He increased my Amitryptaline to 75 mg a night. For about a week, the medicine helped and I thought I would be pain free.

Then the pain came back the next week. I am miserable. I am so blessed to be able to work from home, however I sit in a pair of boxers with no underwear and sit on ice packs all day. I feel like someone took a heating iron to my vagina. Also, I feel like something is sticking me down there alot. I do daily vagina checks and can’t understand why I feel pain when it looks normal down there. Then at times, I’m blood red for no reason. The only time my vulvodynia is better is when I am on my period. I don’t understand that. Also, I have pain near my rectum area or the area between my vagina and rectum (perineum area). Today, I have a new boyfriend who is supportive, as well as my parents. I feel so isolated because I can’t talk about this with just anyone so I am so thankful to find this site. I feel like my vulvodynia rules my life. I have decreased my Amitryptaline back to 50 mg at night b/c I was so tired during the day. I can’t tell a difference from the decrease. I have pain regardless. I will give anything for any suggestions to help me be pain free.

I know everyone is different and has to find their own cure. Has anyone tried acupuncture? Does anyone else feel better during their period? Any feedback would be greatly appreciated!! Thank you so much!! I can’t imagine being pain free again!

Jackie


jmcmil

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Pain Relief

Post  evanrude on Sat Jul 07, 2012 4:08 am

Hi Jackie,

I'm so sorry to hear that you're suffering. It is so unfair. I'm lucky compared to some of the women I've read about.
My pain is pretty mild. I haven't sex in three years. The last time I tried it hurt really bad and that's when I found out
that I had vulvodynia. I don't know if it will ever go away, but I'm trying to stay hopeful. I'm too scared to have sex
again because I'm afraid it will hurt and that will just re-confirm that I'm still not better.

Anyway, my pain is usually worse when I'm on my period. Sometimes I don't notice the pain and I think maybe it's
gone for about a month. then it comes back. I don't think it is as bad as when this first started about 3 yrs ago.
I just hope it will go away on it's own one day. Since this first started I've become better at accepting it and
not so depressed about it. I've tried may things but the only thing I really do for it now is:
Take calcium caltrate daily, try to heathy, take a liquid probotic and put Aquaphor ointment on everday after I shower.
For me, it works better than vaseline or anthing else I've tried.
I keep thinking that vulvodynia must be caused by some imbalance in our vaginas.
Hopefully some doctor will figure it out soon so we can all get relief.
I pray for every woman out there who is suffering with this. It's nice to have a place to talk about it with others that can relate.

Please stay posutive. There has to be an answer out there somewhere.

evanrude

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Thanks

Post  jmcmil on Sat Jul 07, 2012 4:26 am

Thank you for your supportive feedback. I will look into some of the things you listed to try. I am desperate to try anything at this point. I try to stay positive and am thankful for my good days. Most posts I have read on this site are related to sex and although I am definitely not interested in having sex when I am burning, I have a constant most all of the time. Sitting on ice seems to numb it, however I dread having to get dressed and go out because I never know if I am going to burn or not Sad I pray that the docs find a cure and that everyone on this site gets healed.

jmcmil

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A Chiropractor has helped me!!!

Post  KathyH on Sun Jul 08, 2012 4:20 pm

Hi Ladies,

My problem started in January this year after I had a hysterectomy. I was in pain from 4 days after the operation and I was examined by so many Doctors and none had an answer as to why I was feeling what I was feeling, they all said the same that they couldnt fine anything wrong. In the end I was in suc h a state that they admitted me and did a second operation as they thought there maybe some scare tissue causing my pain, this done I was still the same. My GP told me that I would have to get used to the new feelings I had down there and that it would become the norm, and that when I felt pain when out walking I should stop and listen to the birds singing and then I would forget about it, what a joke, dont know how you forget about a burning hot neddle sensation digging in your bits!!! I have since changed my Doctor.

I saw my Gynecologist again last month and when I explained all my symptons he said he thought it may be nerve entrapment in my back due to the position I was put in during the operation and that he would send me for an MRI scan and then to see the back Doctor. While waiting for these appointments I took matters into my own hands and went to see a Chiropractor, who said she thought my Gynecologist was probably right about my back. She as very wary as to what treatment she would do but used some special blocks and light manipulation and I am delighted to tell you that I am 80% better!!! so much so that my husand and I even had intercourse for the first time since before my first operation, and the lubrication we used didnt sting, I couldnt believe it
as every cream, lotion and gel I had used to try and sooth my pain only made it worse. I know every ones situation is different but I would say that going to see a Chiropractor may be an option you could try, who knows, it might just do the trick and its certainly worth a try.

I wish you all good luck and hope and pray that you all find an answer to your problem very soon. God willing the medical profession may come up with an answer before long so no other woman has to suffer this terrible complaint in the future.

KathyH

KathyH

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Re: My story: Please help and thank you for this site!

Post  jmcmil on Mon Jul 09, 2012 2:43 am

Hey Kathy,

That's great that a chiropractor helped you!! I used to see one years ago and maybe I should go see one again. The problem is that I live in a rural town and our chiropractors wouldn't know what vulvodynia is, however I could go and not mention vulvodynia to see if it helped. Anything is worth a try..thanks for the info and your supportive reply. I wish you the best of continued success! I pray too that the docs find a cure because there are so many women affected..

Take Care,
Jackie

jmcmil

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Re: My story: Please help and thank you for this site!

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