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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


First internal physio session

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First internal physio session

Post  Kathy100 on Tue Dec 10, 2013 4:12 pm

Felt I had to share this with the only other people who would understand. So there I was yesterday - having my internal trigger points and knots eased out! The things we have to go through with this condition.... I was really nervous - my legs were shaking before she started but it was ok. She found my muscles were knotted up on both sides; the left worse than the right & pain at the 12 o'clock position. It hurt like hell when she released the trigger points but if it means an end to this whole nightmare I can do it. I could feel my muscles releasing which felt really good (worth the pain). She warned me I may have all sorts of flare ups this week. I was ok last night but today it hurts when I walk (spikey pain) but not when I'm sitting down. Normally it's the other way around....hopefully things will settle down - I've got another session next week.

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Re: First internal physio session

Post  meelie on Tue Dec 10, 2013 7:14 pm

Keep going, sounds good. It will help if it's muscles. Must give it time. Yes, it is horrible what we women have to do to get better. I still feel humiliated when I go and have her work on my muscles but it does seem to help. Problem is my deductible starts over in Jan. and I may not be able to afford it any more. This is something I must find out and decide. My biggest problem is that I just can't seem to relax and muscles somewhere on my body are always tensing, most especially in my pelvic area. Ugh! I don't know how relax and stay that way. Wasn't always that way, used to be so laid back, don't know if is age or the whole dang situation and now I am expecting pain all the time. Any suggestions on relaxing?

meelie

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Re: First internal physio session

Post  mary jane on Wed Dec 11, 2013 11:44 am

@ meelie, I have the same issues. Have you tried baclofen ??
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Re: First internal physio session

Post  Kathy100 on Wed Dec 11, 2013 3:42 pm

Hi Meelie, thanks for your support - it really helps to know there's someone else out there like me! I'm feeling much better today - the pain has gone at the moment apart from one or two small flares so fingers crossed! I'm like you relaxing is difficult now especially the pelvis.... I used to be able to relax fairly easily. I think it's this condition and everything that goes with it. I try doing deep breathing when I remember and to relax my shoulders & pelvis throughout the day. I do some very gentle pelvic floor stretches & pilates which calm me down too (as long as there's no pain). I listen to a mindfulness CD at night which gets me to sleep. I've just bought a relaxation CD from Amazon to try aswell. I hope you find a way round your deductible.

@mary-jane - I've heard of baclofen and it is used a muscle relaxant. I've never tried it - I don't want to take anymore meds yet if I can avoid it. Something to bear in mind though.

Kathy100

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Re: First internal physio session

Post  meelie on Thu Dec 12, 2013 2:50 am

No, I haven't tried baclofen, is there a another name I would know it by? my gyn gave me flexerile but my PT says it doesn't affect the pelvic floor muscles. I have had two good days so far this week. Missed my PT visit today due to a wreck on the freeway that tied up traffic so long that I missed my appointment altogether. Hope there is a cancellation on Friday so I can get in there. I really think it is helping. I do deep breathing. Have not tried pilates. I don't know any of those moves. I bought the book about pelvic pain by Laura someone, I don't have it right here for her last name. I need to get back to that. PT told me not to do any of them at first cause I was so tight but I'm going to as her about them next trip. What is the name of your relaxation music? I haven't thought of that. I am constantly catching myself tightening up in my buttocks and have to keep reminding my self to calm down. It is so ingrained after 2 1/2 years of sitting on right side to escape the pain of the left pelvic fx. It's so hard to unlearn something isn't it?

meelie

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Re: First internal physio session

Post  Kathy100 on Thu Dec 12, 2013 11:55 am

Yeah - really hard to unlearn things. Physio is definitely helping me too - today has been good so far. The pelvic floor stretches I do are from the Amy Stein book Ending Pelvic Pain. To start with I couldn't do some of them at all - they just caused me more pain but now they seem to help. I had some 1:1 pilates sessions - so the pilates I do is very gentle from that. I did go to a beginners class a couple of weeks back but that just caused me to flare up. The relaxation music is Yoga Nidra - Guided Deep Relaxation - it hasn't arrived yet so I don't know how good it is...but it's worth a try. I'll let you know. I'm the same constantly tightening buttocks, shoulders etc - always trying to remind self to relax....I use a donut cushion at work as most of the time I'm sitting down. Hope you get to PT Friday.

Kathy100

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physiotherapy

Post  topcat on Mon Feb 17, 2014 11:58 pm

Hi I will start physiotherapy March 10, 11, 17 cost is 140.00 per session. I will have to pay first then they'll bill Blue Cross. Just got done with having bladder surgery in Dec. for anterior prolapse. Women and our hysterectomies so long ago, but gravity does pull the bladder and other stuff if not corrected, or not having the reinforcement at the time of the hysterectomy. Just got done ordering from Aidanceskincare.com femmesil ultra and terasil original for my vulvar irritation. Has good reviews service is very knowledgeable.

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Re: First internal physio session

Post  jackie333 on Sat Mar 22, 2014 9:55 pm

I too had a first physio session and got through that but when she gave me exercises to do at home, my lower back went out so bad I had to go to my chiropractor the next day. I emailed the PT and she said I might have done the exercises incorrectly but even when she showed them to me, I could already feel pain in my lower back.
I see the Gyno this Tuesday and will ask her if I should continue with the PT. The other side of the coin was that my wonderful chiropractor--who I have been going to for about 17 years not only fixed my back that day but when I told him I had the lower pelvic area pain he said that MD's send him clients for help and I have to say that what he did really truly helped the back and vulvodynia pain--yipeeeeee!
Also, my Gyno has prescribed a compounded ointment- (3 ingredients) that is so expensive I'm going to ask her this week if it is really worth the price, that is,- are the results that impressive?
I will scrimp on just about anything to feel relief--

jackie333

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Re: First internal physio session

Post  kelseyanne on Fri Aug 22, 2014 11:31 pm

How are all you ladies progressing? Just started PT and i didnt get a ton of amswers, but im practicing the stretches and massage anyway. Im looking for success stories of women who have hard sore pelvic muscles and inflamed vulvas like me. By success i mean even a little improvement. Thanks ladies!

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Re: First internal physio session

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