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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

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Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Newbie from United States

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Newbie from United States

Post  GizmoVette83 on Thu Feb 24, 2011 11:09 pm

I am new to this forum and would just like some much needed support from others that are experiencing the same sort of pain and discomfort.

My pain began about a year and a half ago (september of 2009 to be exact), it started out like a yeast infection would; irritated and itching but something that could be taken care of with medication. It started out very sparatic only happening every once in a while and each time the pain and itching would intensify. I started seeing my gynocologist about it. She would just treat me for yeast infections. Until I started coming up negative for the tests and my paps were normal. The next round of tests were for STD's (I was freaking out just a little bit through all this testing, you just never know), I had only one sexual partner during that year and we broke up right as the symptoms began appearing. I have not had any sexual intercourse since that time, I could not even imagine it at this time; it is a good thing I have been single through all this....or is it, lol. All my tests came back negative, so she was stumped. She had me change my laundry detergent, body soap, underwear (no more thongs), no tight clothing of any kind, body lotion (even though I did not put any on in that area), and anything else she could think of that I may be having an alergic reaction to. Nothing seemed to stop the pain or itching no matter what I tried or did. After many phone calls and visits to her office about this condition interfering with my daily life (no sleep, constantly itching, being in pain, could not sit down, stand up or lay down without pain and discomfort)she recommended that I see a dermatologist. First I decided to see my primary physician so that he could get caught up on everything going on. He prescribed gabapentin (nuerontin). I was to start out at the minimal dose (100mg) and work my way up to 300mg. This was doing nothing for me. I made the appointment with the determatologist. He upped my dosage of gabapentin to 500mg a day and if there was no improvement within a month he wanted to get an MRI of my pelvic region; he thought it may have something to do with the nerves in the surrounding area. Before the month was even up I had to call because I was in so much pain and had no sleep the night before. He gave me another prescription for butorphanol tartrate, only to be used at night for pain, and also to make the appointment for the MRI. Long story short about the MRI, my insurance will not cover it unless my primary physician orders it (It was a long and drawn out process for me to even find out why I was denied). So I went to see my primary physician, all he did was bump my gabapentin up again to 2700mg per day. And he told me he could not get it approved either. My gynocologist found out and she is concerned about the amount of medication I am on, and she is going to try to get the MRI approved. I have an appointment with her tomorrow. I am in excessive pain today and am at a loss. My family and friends just don't understand enough to be able to comfort me.

I am just glad I am not alone in this world suffering from the same thing.

I am frustrated, aggrivated, exhausted, upset, and in pain and I have only been going through this for a year and half. I cannot imagine any more years like this. No
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Re: Newbie from United States

Post  noni on Fri Feb 25, 2011 2:08 am

Hey Gizmo!

First of all you ARE NOT ALONE!

We all have days where we wanna throw in the towel, feel like crap, or wanna binge on a whole tub of icecream!!

Weve all been there...so many doc visits...no actual help...being told were crazy...oh darling take a sitz bath blah blah blah

Gizmo, first of all, just chill and try to stay strong and look ahead. Maybe the current meds are not for you. Ask the doc if you should try Elavil...its a tricyclic antidepressant. It helps with the nerve endings down there.

And yes...unless youre talking to a Vulvar Specialist or someone with Vulvodynia...most people out there have no clue what its like and how disruptive, sad, agonizing, and shitty this is.

Anyways...vent on here as much as you like!

We are all ears!
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Re: Newbie from United States

Post  GizmoVette83 on Fri Feb 25, 2011 3:01 am

Noni, thank you very much for your welcoming words. I am so glad I have found a place where everyone will understand where I am coming from. I have not been diagnosed with vuvlodynia nor has any doctor mentioned it to me. I did my own research and looked up my symptoms and I found vulvodynia and it almost described exactly what was going on with me. This is an amazing site for all of us who need some good advice and support from others that know what we are going through. I really liked how you mentioned that "oh it's just in your head", I can't tell you how many times I have heard this.

I have heard about warm herbal tea bags taking the itch away, does anyone know if this would work? I am willing to try anything to get my pain to a managable level.

Noni, I will ask my doctor about Elavil. Thank you for the recommendation!
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Re: Newbie from United States

Post  Mouse on Fri Feb 25, 2011 10:16 am

Hi there and welcome! It's a crap place to end up but we make it homely =)

Have you found a pain or vulval clinic? Sometimes they are a good place to start. Check out Sarah's post about her video consult, that's really interesting. Physical therapy to see what your pelvic floor is up too is good also. AND if you don't have one and even though it's not in your head... a therapist seems to help make sense of this BS!

I'm so sorry you are in pain. It's very isolating and believe me no one gets it unless they are sitting on this crap also.

There are some great links to check out, my specialist recommended this one. It shows the diff types of V. Vulvodynia basically means pain in the vulva. Yayyyy!!!!

https://netforum.avectra.com/eweb/DynamicPage.aspx?Site=ISSVD&WebCode=ArticleResult&FromSearchControl=Yes&FromSearchControl=Yes

I also found a great link for a clinic in the US

http://www.sohoobgyn.com/vulvarpain.html

We have similarities but none of us have the exact same symptoms and we have all tried various treatments. It takes a bit of work to find things that work but hey what else would we be doing =)

I hope you are having a pain free day. Check out the FB group. Sebby can add you and it's completely private... no really it is!

Take care
Vicki

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Re: Newbie from United States

Post  naomi on Fri Feb 25, 2011 2:11 pm

hiya! welcome to the forum! how come everyone has really thoughtful and cool nicknames...mines so rubbish! you'd never guess my real name!?!

here to support you! we are all in a cack situation but its ace to have our gynae family here to support. so feel free to curse and laugh with us all

xxxxx
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Re: Newbie from United States

Post  noni on Fri Feb 25, 2011 3:24 pm

Gizmo If you have mostly itch and burn then Elavil should help you with that...

I mainly burn and it seems to be helping...I never really had the itch. But were all so different on here.

Gizmo, also when you are feeling better (after you find the right med) look into physical therapy...like Sebby has mentioned on here.....to improve the pelvic floor muscles. But find someone who works with ladies with pelvic pain!

...hmmmm, what else, what else.....

And sometimes when you are feeling shitty physically...try to feel better mentally (i know, seems impossible some days) but do something to get your mind off your vulva.

Somedays I feel like a walking vulva...
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Re: Newbie from United States

Post  Sebby (Admin) on Sat Feb 26, 2011 10:14 pm


Welcome to the fourm Gizmo (love your name!) I take it we should not feed you after midnight!?

The constant pain started for me over 2 years ago and I have been told countless times that its anxiety or all in my head! This is NOT true so do not beleive anyone who tells you this.

Im on Pregabalin (lyrica) another anticonvulsant, been about 2 and half weeks but no noticalbe improvement yet but its early days.

Ive also started home training pelvic floor bio-feedback from the man who runs this site http://www.vulvodynia.com/

I did my first session this evening but will be several months before I know if this is helping.

I too have been single for 2years (not counting a couple of guys which didnt go anywhere but not cos of the vuval pain)

I too thought 'whats the point in dating with this' but I have been instructed as part of my treatment to start dating again! lol see my post in the You Story forum on my video consultation

I too have had and still have many days when I feel I cant cope and just wana give up. Starting this forum really keeps me going and I do hope it can do the same for you

If you wish to join our secret facebook group inbox me

Take Care


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Re: Newbie from United States

Post  jules on Fri Mar 04, 2011 2:55 am

Welcome Gizmo,

I haven't visited this forum for quite some time. I am in a Facebook group w/ most of these ladies. Sebby can hook you up if you are interested. I felt compelled to write because of some commonalities in our stories. I started w/ this disorder the same way you did....thinking i had yeast infections, negative tests, being treated for yeast i didn't have etc. My symptoms started back in July of 2009. I am also on Gabepentin. I am on 3600 mgs a day. i was on 2700 mgs for several months, but my doc. at the pain center just increased it. My docs are not concerned about the dose. I am also on Lyrica. I'm on 150 mgs. Once the doc added Lyrica to the Gabepentin i noticed more relief. The Gabepentin helped somewhat, but it was better w/ the lyrica. I go to a pain clinic for my meds. Gyn. do not know how to treat pain. I did get a diagnosis of Vulvodynia after having a small piece of skin removed from my vagina and having it tested. I learned it was not a skin disorder and everything else was negative..therefore, the lovely diagnosis of V.

I have had two spinal blocks...no relief ( i am considering trying it again, this time in the Pudendal nerve)
every lotion, gel known to man...no relief
tens unit... no relief
Gabepentin: some relief....added Lyrica..much more relief
Vicodin for pain up to three times a day
Physical therapy for awhile...i dropped out. I have generalized V. my pelvic walls aren;'t too tense
foam cushion all the time for sitting...helps
Cymbalta 20 mgs....doses for pain are up to 120 mgs....will get there eventually

I am in much better shape pain-wise then i was in the past. i used to be in HORRIFIC pain all the time. Now, i can workout and enjoy my life. The pain is still there, but nothing like before. There's hope! Don't give up. What state do you live in? I'm in the US too.

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Reply to all

Post  GizmoVette83 on Fri Mar 04, 2011 4:20 am

To start off everyone can call me Jenaya (this is my real name), however if you like you can call me Gizmo too, lol!

Dear Mouse, I have not had the opportunity to visit a pain clinic, I actually do not even know if we have one in my town. I will have to check out the video consultant that you mentioned. I haven't been told to get a physical therapist just yet, I'm still in the early stages of getting things under control. I am actually in the process of changing my primary care provider-he just seemed to want to get me in and out of the office rather than help me out. I loved your example of Vulvodynia-pain in the vulva lol! . I love your sense of humor, it helps me forget about the pain for a little bit! I will be inboxing Sebby about the Facebook group.

Dear Naomi, thank you for the compliment! This is actually my email address that I have had since I began using email (possibly 10 years ago! Shocked ). It's a combination of my favorite little gremlin and my favorite car (CorVETTE). I was actually a little hesitant to put my real name on here at first, but now I don't mind everyone knowing. I am sure I will need to vent and I hope you ladies can understand my humor when I do! Thank you for making me feel so welcome in this forum!

Dear Noni, I think it's funny that you mentioned Elavil. I had a follow-up appointment early this week and my gyno is weening me off of the Gabapentin and she has me starting the Elavil. I hope to see some changes in the near future. Yeah I think the itch is the worst part for me. I cannot wipe or do anything really without irritating the area. I have found that using a squirt bottle has eliminated the amount of touching that I have to do. It seems to really work. I may look into getting a physical therapist just because I have seen a few of you who recommend it. "And sometimes when you are feeling shitty physically...try to feel better mentally (i know, seems impossible some days) but do something to get your mind off your vulva. Somedays I feel like a walking vulva... " This is the best couple of lines I have heard! It made me laugh so hard, it was great! Thank you so much for your humor and great personality!

Dear Sebby, I am so glad you recognized the name! Most people have no clue what it is. Yes, I agree, it gets very frustrating to hear that your pain and itching is all in your head and that you just need to stop itching and it will go away. I wish this was just all in my head! I'm going to have to check that site out about the pelvic-floor home training. Dating just seems like something that I cannot handle right now. I am currently a full time online student, as well as working a full time job, and I also have an active 8 year old that has commitments, on top of this vulvodynia that I am dealing with. Maybe one day, I do miss the companionship Sad . I will inbox you about the Facebook page. I am usually on there often.

Dear Jules, I have noticed a lot of similarities in the dates that everyone seemed to have when their symptoms started. It must have been in the air, lol! That is a lot of Gabapentin, are you on the 300mg pills or do they come in higher dosages? I was taking 9 pills a day and it was really starting to wear me down. They are now weening me off of the Gabapentin and starting me on Elavil. The Elavil will only be one pill. They also have me on a compound cream of atropine and aquaphor, it seems to be helping. For pain they have me on Butorphanol Tartrate, it is similar to Morphine. It seems to help me get sleep at night. My new doctor that I am seeing may take skin samples, she mentioned it at our consultation. I'm scared it will hurt pale .......not like I don't experience excruciating pain everyday, lol! I have had one spinal block but it was when I had my c-section. I can't imagine having another one. But I can see where it would eliminate the pain for the time being. I have also tried every lotion or cream out there and they never worked, but this latest one seems to be helping. I had to get it at an approved pharmacy that can compound meds. Does the Vicodin seem to help with the pain at all? I am afraid that they won't renew my prescription for the Butorphanol Tartrate. However, I can see why, it is habit forming. But it seems to relax me enough to where I can get comfortable to sleep. I use cushions too!! They are amazing at times! I live in New Mexico. Where are you from?

It is really great to meet each one of you. You have made me feel comfortable and I love everyone's sense of humor! Thank you again for making me feel comfortable during this difficult time.

P.S. I have been pain free for 3 days!! on a side note it could be because I am on my period, we will find out in a couple of days if I remain pain free. **crossing fingers**
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Re: Newbie from United States

Post  jules on Fri Mar 04, 2011 4:53 am

Hi...I'm very impressed w/ your lengthy response to all of us. Can't wait to meet you in person on our facebook page. We have a lot of fun there. The other night we all talked about our food cravings. for some of us it was only 8 p.m., for others it was 3:00 a.m. and for at least one of us (Mouse) it was the next day. they were all making me very hungry w/ their talk about chocolate and ice cream. Damn, I'd love to get your morphine pills. Yep, I'm guessing that won't be long term. way too habit forming. Vicodin takes the edge off if it doesn't get to the horrible pain score. if I wait too long, it's too late. I used to use gel packs i kept in the refrigerator. I kept gel packs cold and put them on my vulva. ahhhhhh, it was relief because i was on fired down under. i don't use the gel packs anymore. but, that's an idea if you haven't tried. the spinal blocks are different than the epidurals. they do not completely numb you. i have had two kids...the complete numb would be great. they use a anesthetic and steroids for the swelling. they shoot it into your low spinal (tail bone). i was allowed to take two valium ahead of time. but, i don't recommend it as a past time.

Oh, i live in beautiful, warm, sunny Minnesota. Now, if you have been to MN. you know i'm lying about the weather. Wish you were closer. I wish we all were. we could meet for coffee or beer or something.

K...on to the skin sample thing. not the comfiest thing in the world. but, you have been through worse. hey, if you have morphine pills (or whatever they are) left..take one ahead of time. LOL. they give you a few shots of Novocaine and then take the smallest section of skin. i had a little hole there for awhile. No, it wasn't my vagina, it was the hole where they took my skin. Funny enough, i went the following week for the results. when my doctor told me i did not have cancer or a skin condition, i started to cry. one would think i would be happy i did not have cancer, but i wasn't, well i was...well, i just wanted an answer damnit. I went to the Mayo Clinic in MN. for a diagnosis.

the best referral i had was to a pain clinic.

glad you have cushions. do you have pain all over the vulva or just in the inside (vagina)? i have generalized Vulvodynia...pain outside..that's why sitting is no fun. if the pain is located inside the vagina, it's vestibules vulvodynia.

so glad you have had a few good days. lots of women have tried Elavil or are on it. i haven't tried it. i tried it years ago for migraines and couldn't stand the side effects. i have not had side effects on the gabepentin or lyrica. i was up to 300 mgs on lyrica and gained weight. quite possibly it could have been my lack of exercise and all my eating and drinking...ha ha! so now i am at 150 mgs.

ok...nice chatting. stay in touch and look forward to seeing you on facebook.

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Re: Newbie from United States

Post  Sebby (Admin) on Sun Mar 06, 2011 10:40 am


I have inboxed you back Gizmo bout facebook, look forward to seeing you on there Smile
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Re: Newbie from United States

Post  noni on Mon Mar 07, 2011 1:12 am

Hey Jenaya!

Im just really happy you have found this amazing resource (ofcourse im referring to Sebbys forum). The women on here are very knowledgeable and its very assuring to know that there are others out there who can totally relate and be of help.

You mentioned your doctor is going to put you on Elavil? What dosage?
Jenaya just remember it may take up to 4 weeks to see improvement. Another thing is you will need to determine what dosage works for you...I am on 20 mg at the moment. Also, I will tell you that Elavil works unevenly...that is, you will have good days and some bad days. I had a 2 day long flare, followed by 2 virtually pain free days.

However, with all that said, atleast for me, I believe Vulvodynia is something that requires several approaches. So there is a dietary component, PT component, medication, and lifestyle changes. For me that means eating healthy and sticking to it, lots of water, exercising, taking my meds regularly, and avoiding tight pants and biking.

We as women are complex beings...emotionally, mentally, spiritually, and physically. Sometimes when I feel low I do things to lift my spirits. I find the more I nourish the mental/emotional aspects of Vulvodynia, the stronger I become physically...or atleast I cope much better.

Looking back, the first three months I felt near suicide a couple of times. And I must say, to anyone out there, please be pateint and strong. All you need is to find a doctor who will listen to you (NOT SAY YOU ARE BONKERS), and who is serious about giving you appropriate treatment.

I feel very fortunate that my GP is open to my ideas regarding this V thing...but I must say I came across many so called specialists who made me feel like I was a total waste of space as a human being. At any rate, I am still waiting to see a Vulvar Specialist
after all these months. Nevertheless, I am looking forward to seeing someone who knows more about this than i do (Im hoping at least).

Anyways...take care!

Hugs,
Noni



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Re: Newbie from United States

Post  Mouse on Mon Mar 07, 2011 1:53 am

That's really great advice Noni. I believe it needs a multi system approach as well. Treat the mind/body and soul. It just makes sense that anything we put into our bodies has an effect. Becoming strong mentally is probably the only way to exorcise this monster. I hit the bottom about six months ago - fuck I hope that was the bottom pale My therapist was starting to get the serious face. I have a lot of people who love me so kicked myself up the ass and started looking for answers. I don't know if these specialists are doing anyone any good.

I think we should all go on a retreat. Somewhere warm, with lovely food, meditation, massages, someone nice to chat too, PT etc and each other to have a good old laugh... yayyyy!!! Oh a beauty therapist would be nice as well... and no bloody men!

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Re: Newbie from United States

Post  noni on Mon Mar 07, 2011 2:10 am

Hey Vicky!!

I can relate to hitting rock bottom...but I think that sometimes that is what you need...to help you realize that you need to reach for your inner fighter !

I believe there is a silver lining with this condition...I have learned to love myself more, to be kinder to others, empathise, and take one day at a time. Damnit if I can get up early and go out for a walk I have accomplished something!

In the past I would run myself ragged...now I respect myself enough to not push myself and be gentler on the mind and body.

Ladies, the very fact that we face this everyday and continue the search for answers is a testament to our courage and character as human beings.

Take care,
Noni
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Re: Newbie from United States

Post  Mouse on Mon Mar 07, 2011 4:43 am

Hey, I'd love to meet your inner fighter!

I'm glad you mentioned being kinder to people. I read on the Happiness project about making an extra effort because people just don't expect it and sometimes it can change their day. I like that. The rest of the happiness project made me tired but I will conquer it one day. My therapist used to say things like give yourself permission to take some time out and not look after everyone else. Taking a step back and a deep breath helps a lot with forward momentum.

I love your last sentence!

Take care hon.

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hellooo

Post  shay on Sat Mar 12, 2011 12:38 am

hi, im currently on 25mg of elavil once a day at bed time, no side effects so im just waiting on the positive effects to kivk in lmao

i am battling the sugar and trying to fight off yeast since i have been getting recurring ones for the last couple of weeks

but all in all without this group of ladies around idk where my mental state would be

but keep it up and remain positive and hopeful

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