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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» 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

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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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 …

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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



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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


Just joined - lots of questions - let's beat this thing!

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Just joined - lots of questions - let's beat this thing!

Post  bluekangeroo on Fri May 18, 2012 10:04 am

Hello everyone, I just thought I would write a few lines to say hello, I have just jumped in and started firing questions at you all which seems a bit rude. I thought I should say hello and introduce myself.

I'm 35 and have had this pain for about 10 years - ever since a run of urinary and vaginal infections way back when I was travelling in Bankok.

I finally got a diagnoses last year of vestabulodynia - provoked vulvodynia from a dermatologist in Cambridge. I was so elated, she said just take this amatryptaline, once a day at night for a few months, and put on some topical fucibet cream and your nerves will get re-programmed and you will feel better. Hooray! I was so excited.

However, almost a year later I am still here, hurting and feeling pretty cheesed off i can tell you. I didn't get on with the amatryp at all - made me feel like a zombie on only 5mg per day! I just couldn't function at all, and I am not sure I understand how it is treating the problem, it just seems like a bandaid for the symptoms.

I am desperately keen to find a cure! Not just a way of coping, but a real live cure! Do you think that is possible?

Having searched obsessively on the net these past few months I am currently convinced that vulvodynia is caused by several different things:

hormone imbalance - prob pill caused
tight muscles - from some trauma or other or even just infections etc...
too many nerve endings
leaky gut leading to oxilates getting into the bloodstream ? (not convinced on this one though)
pelvic misalignment - needing fixed by chiropractice

Any more ideas - feel free to lob them in!

I am currently trying out the physio route, having ordered a book by Amy Stein called - heal pelvic pain - which recommends exercise and massage to cure the problem. Ive been doing it for a couple of weeks but I think I really need to see a proper physio to see if that is my problem. and make sure I am doing it right. I am so squeemish about the internal massage I can't begin to tell you!

am also randomly taking some supps b vitamins and calcium...

I feel a bit all over the place, lurching from one possible answer to the next... it's all a bit depressing really isn't it?

I have started meditating to try and help me come to terms with this thing and stop freaking out!

I also have coeliac disease and a very sensitive tummy - possibly ibs or some such other joy! I hear that gut issues and vulvodynia are often related.

I have a very understanding hubby, who is supportive all the time I am actively fighting this thing and trying to find a cure. It drove him nuts over the first 8 years or so of burying my head in the sand and bouncing from doc to doc trying to find what was wrong.

Although I sometimes think all the research and the obsessing about it is making me more aware of the pain and making it worse...

I am so happy to have found you guys though to help with ideas and keep me strong and motivated. I hope I can help with suggestions and ideas too.

Oh dear, this is rather more than a few lines now isn't it... I will leave it at that for now... I could go on for pages! I'm thinking of writing a blog... my road to recovery? And chart all the things I am trying... but again, is that getting a bit obsessive?

Anyway - nice to meet you all, hope to hear from more of you soon!

Blue Kangeroo (anne)

bluekangeroo

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Re: Just joined - lots of questions - let's beat this thing!

Post  Loulou on Fri May 18, 2012 1:11 pm

Hi Anne and welcome!

I think your summary of possible causes is the same conclusion I came to. I'm focussing on the physio/chiropractice route at the mo too - have got Amy Steins book and finding it very useful. My pain has certainly diminished and I think its related to the exercises. I say this even though a biofeedback assessent of my pelvic floor came out broadly as 'normal' - i'm not convinced it isn't still the problem somehow especially as the exercises seemed to have helped (I was having a relatively good day when I had my assessment). I have provoked vulvodynia rather than vestibulodynia so haven't been doing the internal massages as I don't think I need them (maybe I should).

LIke you i'm focussing on finding a cure not just relief - though I think finding relief (even temporary) is important for our sanity! But I know what you mean about getting obsessive and 'lurching about' - I keep a vvd diary where I record my pain levels, outline of what i'm eating, vitamns i'm taking, periods etc and i've started to plot this onto an excel graph (needs a bit more concentrated effort - i keep putting it off!) to try and find any patterns. It can take over but I'm getting better at coping and doing 'normal' things when I can (i've had vvd for 6 months) I see the diary as part of my strategy for overcoming vvd so I try to put a positive slant on my 'obsession' Smile

Anyway i'm sure you will get lots of support and ideas here!


Loulou

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Re: Just joined - lots of questions - let's beat this thing!

Post  bluekangeroo on Sun May 20, 2012 4:53 pm

Hi Loulou, thanks for your reply, I'm not sure the phsio is helping me at all, I've been doing Amy's routine for 20 days now and hurt worse than ever before.

Did you get worse before you got better, or did the exercises just help from the outset?

I'm hoping to go and see Helen Forth soon - a physio who has given talks about vulva pain on the vulvodynia support group. I emailed her the other day, and she said an assessment would be a good place to start and to stop the Amy Stein exercises until I see her if they are making things worse.

I have contacted the chiropractor that ivyrose mentioned too, who is going to ring me in a week or so to see if that might poss be the cause, I am not holding out a lot of hope though as I don't really have the back pain, but I do notice it is better when lying down and worse once I am up, which ivy rose mentioned too.

God - talk about clutching at straws!

I have provoked vulvodynia too - that is the same as vestibulodynia no? I have a fact sheet from my doc that says vestibulodynia (provoked vulvodynia) so I think it is the same thing.

I am so glad to hear you are getting relief from the exercises and not having to do the massage - the internal massage scares the willies out of me, but I know lots of people say it helps...

Good idea to keep the excel charts and diary. I keep a note on my phone of pain levels, but I'm not really noticing any patterns. Not sure I have the organisational know-how to plot on excel!

Let me know if you spot any patterns or have any theories about what helps you?

Have you been to see a physio? Or a chiropractor?

Let me know how you get on, or if you have found anything that helps?

bluekangeroo

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How pelvic exercises and trigger point massage have helped me

Post  Loulou on Mon May 21, 2012 8:46 pm

Hi Anne

Sorry to hear that Amy Stein's exercises don't seem to be helping and i think, given your pain, that you're doing the right thing to stop them until you've had the specialist physio assessment. Just wondering, have you been doing the strengthening Kegel exercises? If so and it turns out you do have tight/overactive PF muscles then this might be reason why your symptoms are worse. I certainly don't do the Kegels (mainly becuase my biofeedback confirmed that my PF muscles were 'normal' - tho a bit slow to relax - and didn't need strengthening).

Also I don't do all the Stein exercises. The main one which helped me was a version of one of Amy Steins, i call it the frog pose (on your back, bend knees, then bring soles of feet together and let your knees drop down to the floor making sure feet are drawn up towards your crotch - relax and let your knees gradually drop closer to the ground - they won't go all the way!) This is good for adductor muscles and mine were obviously very tight as when i first started doing it i couldn't drop my knees very far. I don't think its the whole issue with me as i still have some discomfort (tho not pain unless i have a flare up). Because i've also been diagnosed by a chiropractor with a misaligned pelvis i'm also doing an exercise routine (for Condition II which relates to a misaligned pelvis) from Peter Egoscue's book The Egoscue Method of Health Though Motion (not a vvd book but a book about musco-skeletal function). Im also massaging any trigger points I find in my thighs including the 'cleft' where thighs join vulva area ie between the thigh and the outer labia - found some very tender spots there which have diminished through regular gentle massage.

All this seems to be helping me (have been doing this in a focussed way now for about 2 weeks now, prior to that I was doing bits and bobs halfheartedly). I'm just now waiting to see if the benefits will last - if no flare ups then I'm on the right track (fingers crossed!)

Finally (sorry, long post!) to answer your specific questions - i saw a phsyio once to have a biofeedback assessment and i'm seeing a chiropractor every few weeks (to sort out a shoulder problem I had as well as the pelvic misalignment she found). And I don't think I have vestibulodynia as i don't have pain on penetration though I do think I have clitrodynia (i'll do a separate post about that!)

Good luck with your physio - let us know how you get on.
Lx

Loulou

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Re: Just joined - lots of questions - let's beat this thing!

Post  bluekangeroo on Tue May 22, 2012 10:06 am

Hi LouLou,

I'm so glad you are finding some relief for all your efforts. I think I need to stop flitting around halfheartedly doing everything and focus on one thing at a time and see what helps me.

I feel a bit down in the dumps after having done the Amy Stein exercises so full heartedly (up at 6.30 to stretch before the kiddies were up and again another once or twice a day for 20 days) and now feeling worse.

I didn't do the kegels, just the end the pain routine which is all about loosening and stretching, so not too sure why I feel worse. But I have still not had any good days since starting that routine, even now I have stopped! I feel almost like I have made it go from provoked to unprovoked, it just hurts all the time now, except when I am laying down in bed, so waking up in the morning is good, am tempted just to stay there sometimes! :-)

Anyway - off to the physio next week, and got an appointment with the dermatologist who diagnosed it on Thursday this week, and hopefully going to speak to the Chiropractor who helped ivyrose next week - so at least I feel I am doing something positive to find out what the cause it.

It's a nightmare isn't it, I felt so happy having a name for this thing, but now I have a huge task to find the cause and then the right treatment!

I'm not sure I have vestibulodynia now either, as I don't especially have pain on penetration, but it's hard to say as I have avoided that for so long now because of the pain that is there anyway!

Keep me posted on how you are getting on with the chiropractor. Have you had no flare ups for a while now?

I am soooo hoping I have a misalinged pelvis and that will fix the problem!

Take care

Ax

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Re: Just joined - lots of questions - let's beat this thing!

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