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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.

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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


some relief

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some relief

Post  jules on Sun May 09, 2010 3:25 pm

Hello,

I am going to again recommend pain clinics as a help to women w/ Vulvodynia. I visited numerous gynecologists. Gynecologists are not known for treating pain. I am feeling much more hopeful now that I have a connection with a pain clinic. I have had two spinal blocks. For me, neither helped. I take 3000 mg of gabepentin a day. That helped someone but, the pain was still there. The nurse practitioner at the pain clinic added Lyrica to what I am already taking. Lyrica seems to have taken the edge off of the pain. I still have some pain. But, when I look back, I have less pain. It is not as severe. I was taking 50 mgs of Lyrica. I will start taking 75 mgs of Lyrica today and I will continue to take Gabepentin. Lyrica is used for patients with nerve pain. My doctor also gave me a prescription for Vicodin. Vicodin for me, helps take the edge off of the pain. This has helped a lot. Also, I am being referred to physical therapy at a clinic that specifically helps women with vulvar pain. I also continue to use a foam donut to sit on. I can tell a huge difference when I sit in a chair without it. I am definitely not pain free. However, I have less pain. Will keep you posted. Feel free to ask questions...I want to help others who suffer with this complicated disorder.

Julie

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Re: some relief

Post  Sebby (Admin) on Thu May 13, 2010 6:41 pm

Hi Julie

I have thought about asking to be refered to a pain clinic.

I wasnt sure though as I am being refered to a vulval clinic within the next six weeks and Im wondering if I should wait to see them first?

I could ask my GP as I am seeing her in a couple of weeks (trying to get a smear done! and Im terrified!) so I could ask her to refer me.

I just wondered if it would complicate things seeing two consultants for the same disorder??

Sebby
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response-don't wait around in pain

Post  jules on Thu May 13, 2010 7:36 pm

are you seeing a gynecologist who specializes in Vulvodynia? My experience with every single doctor I have had (at least Cool is that they may be able to diagnose the disorder but, they do not usually know how to treat the pain. I went to a vulvar clinic to get the diagnosis (Mayo Hospital). the doctor i saw told me to increase my neurontin. but, when i called a couple of weeks later in horrible pain, she told me she didn't know what else she could do for me. I finally saw this so called specialist (one of 6 docs who treats the disorder in Minnesota). In that appt. I was the one who asked to have a spinal block referral. she didn't really seem to know how she would treat the pain. The pain clinics specifically address the pain. The doc and nurses at the pain clinic knew what Vulvodynia. they continue to add meds to try to help me. I would speak w/ your general practitioner to see what he/she thinks. I would not wait around for 6 weeks to deal w/ horrible pain. But..still keep the appt. at the vulvar clinic. that's my advice. let me know how it goes and what you decided. good luck w/ your pap smear. that is never fun, especially when you have pain.

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Re: some relief

Post  Sebby (Admin) on Sun May 16, 2010 9:45 pm

Yeah I will have a word with my GP when I go for the dreaded smear!!!

It does seem odd that a gynea who can diagnose Vulvodynia cant actually treat the pain!

I will keep you updated

sebby
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Re: some relief

Post  hopeful on Sun Jun 05, 2011 6:25 pm

Hi Julie,

Apologies if you have already mentioned this somewhere else on the forum but I was wondering if you could let me know where you got your donut cushion. I was thinking of getting one as I read somewhere that it could help and I work in an office so need to sit all day.

Thanks!
Christine

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foam cushion

Post  jules on Sun Jun 05, 2011 7:38 pm

here's the site i ordered from. i have four now. i'm collecting Sad hope it helps.

http://www.allegromedical.com/pain-management-c6489/molded-foam-donut-pillow-w-cover-p213745.html

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Re: some relief

Post  hopeful on Sun Jun 05, 2011 7:58 pm

Great thanks!

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Re: some relief

Post  noni on Mon Jun 06, 2011 12:02 am

Hey Jules

I have always identified with your posts. I was diagnosed with neuropathic vulvar pain back in March, although I had suffered for months with intense burning and aching. Jules, you are spot on with Gynecologists. They have absolutly no idea how to treat vulvar pain ...they just are completely clueless about vulvodynia. If you arent pregnant, have some STD, or need diflucan they are not interested in helping you!

I am on the Ami at 50mg dose. It helps. I had a relapse a few days ago...maybe it was something I ate or my anxiety in general these days. But how could I not be anxious? I am scared the pain will return. It has a mind of its own. So, basically, the burning made a comeback but has now disappeared into the vulva wilderness.

I think this is just something I will need to manage for the rest of my life. Just take it a day at a time. Continue with meds. I know meds arent for everyone, but pain is pain...and I am happy that some relief can be found.

Jules: Have you tried physio yet? I want to but my work health insurance does not cover this. And it aint cheap to treat pelvic pain. Geez, I couldnt have asked for a more expensive condition..






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Re: some relief

Post  jules on Mon Jun 06, 2011 3:25 am

hey noni, glad to hear you have some relief here and there. i don't have anxiety, just depression that is pretty much gone because of my Cymbalta. Currently, i am on Gabepentin 3600, Lyrica 150 mgs, Cymbalta 90 and Percocet..as needed. I do have a P.T. I have met w/ her a handful of times. interestingly enough, i really do not have pelvic floor issues. i do have pain from sex when it is from behind...the walls hurt. but, my walls are pretty good. I have generalized V. so, i can insert tampons and penis' (LOL)..but, it hurts all over the vulva and is often times on fire. My P.T is referring me to a acupuncturist. I will call this week. So far, i haven't had much relief from my P.T. and my meds are not working too well. I am looking at having surgery for a neurostimulator. the surgery will probably be in july. in the meantime, i'm hoping the Cymbalta helps. otherwise, Ami is next. years ago when i tried it, i did not like it. i tried it to get for migraine headaches. i'm still working w/ the pain clinic. they keep on pulling ideas out of a hat. as long as they do..i will be there to see what kind of magic they have for me. Surprised do you see a physio? Hope you continue to do well. i did have relief awhile back for a good few months...you always feel like it's too good to be true. Enjoy!!!!

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Re: some relief

Post  noni on Tue Jun 07, 2011 11:01 am

Hey Jules

I havent done physio yet...its expensive and work insurance doesnt cover it. Besides, I am pretty sure my muscles are not to blame for this hell. I have generalised V...meaning pain on the outside and all over. Not a specific area of pain.

I havent tried any other meds for V ... other than amitriptyline. Which I get bad days and good days with. Its a mixed bag really. The pain is so random and its hard to tell what brings it on.

I think alot of the younger gals on here in my age group have vulvar vestibulitis which can be treated with lidocaine and meds. This is where I get confused, since I have generalized unprovoked V pain...I am wondering why my specialist told me to try lidocaine...I havent received it yet because I had to put ina special order in the pharmacy. I am willing to try anything. I ofcourse have a gel pack in the freezer just in case...

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Re: some relief

Post  Sarah001 on Tue Jun 07, 2011 12:04 pm

I've got constant unprovoked generalised pain too and I was given lidocaine to try. It doesn't mean physio won't work either, last November I thought I was heading into provoked pain only with biofeedback only to find it flared back up again but it shows it can help. There seems to be some confusion about physio only being for VVS and it's not, it's for any type of V.
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Re: some relief

Post  jules on Wed Jun 08, 2011 2:43 am

I will second Sarah's comment. P.T. is for all types of Vulvodynia. The pelvic walls generally are not the cause of the pain on the outside (could be for some). The pain in the walls for me are secondary to my pain on my vulva. When you have burning pain on the vulva or inside the vagina, without realizing it, you tighten up your pelvic walls. as a result they get tight and for some people, they spasm. For me, they aren't too bad, but i do feel them and they hurt when i have sex in certain positions. If you can calm the walls on the inside, it's possible it won't be as bad on the outside???? It would be worth at least having them checked out by a P.T. who specializes in pelvic pain disorders. as for the lidocaine, it can burn the skin...but, not all women. i can now use it w/out the burning. it generally burns for a couple of mins. it only numbs me for a very short time. But, like you said...try it all! good luck!

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Re: some relief

Post  noni on Wed Jun 08, 2011 9:42 am

Thanks ladies.

I really appreciate your comments.

Where would I be without this forum ?? Surprised
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Re: some relief

Post  jules on Thu Jun 09, 2011 10:32 pm

it's so nice to be able to speak freely about pain and treatment options. This forum and our facebook page has been a huge help for me. i stopped checking this forum because i was so busy talking on the facebook site for women w/ vulvodynia. you can write a lot more here and for those who want to remain anonymous, this is a good spot. Noni, are you in our facebook group? it's private. If you're interested, you can let sebby know. she'll add you. otherwise, this is fine too. where are you from? I'm from the US. hope your feeling ok today.

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Re: some relief

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