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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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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 …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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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HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

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HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  zarli on Sat Aug 24, 2013 2:28 pm

Hi All
Just wondering if any one else suffers from painful burning heels/feet when unprovoked vulvodynia is present?

zarli

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Alana3 on Sat Aug 24, 2013 2:44 pm

I do sometimes...

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Sat Aug 24, 2013 9:31 pm

Me too, the entire soles of my feet burn at times but more so in the winter for some reason. I'm not totally sure why it happens, could be crosstalk between nerves or could be misalignment of various areas, I can't really say for sure but I have found that even when my V isn't so bad my feet can be . I also get burning down the inner thighs quite often but more so if I have to stand for lengthy periods like I do at work.
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BURNING FEET

Post  zarli on Sun Aug 25, 2013 12:05 am

So glad I'm not weird!!
I have been doing research on nerves, the genital area is close with the feet in the nerve passage in the brain. I am now looking into trapped nerves as I have always had a gut feeling this is my problem. Wouldn't that be so easy if some one could 'untrap' your nerve!!!!

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Sun Aug 25, 2013 1:56 pm

There is a thing called nerve flossing which is supposed to free the nerves but it's very hard to find specific information about how to do each nerve online, however physios would know about this. The only one I know how to do is the sciatic nerve which isn't really one of the ones associated with V so it's very little help!! Rolling Eyes 
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still searching

Post  zarli on Tue Aug 27, 2013 11:25 am

Thanks Sarah I am still researching will let you know how I go. Im off to my specialist at the Royal Womens Hospital in Melbourne on Sep 9th I have a list of questions about it I will keep you posted kind regards Zarli

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Tue Aug 27, 2013 8:49 pm

Great zarli, I love adding to my geeky knowledge! The nerve flossing is sometimes called nerve gliding just in case they don't know what you're asking about. My physio did once mention she knew how to release the pudendal nerve but I didn't press her at the time so other physios should know too. Good luck!
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nerve pain spreading

Post  Rainy Day on Thu Sep 05, 2013 1:50 pm

At my worst, I couldn't wear socks/shoes, since my feet were burning. My ENTIRE leg would sometimes burn...at times it would spread to my arms, chest, and back. I haven't had that happen for about a year...but when my flare was out of control it did happen. So, don't feel like it will be like that forever. Mine went away.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Finch on Fri Sep 06, 2013 10:54 pm

I'm so glad I'm not the only one who finds an association with the two areas. I have always found that if my feet are too cold, more so if I place bare feet onto cold floor, I feel the burning in my genitals. Also if I walk a lot, when my feet have been rubbing,it can aggravate pain or burning in my genitals.

Interesting to know the two nerve pathways are close together. Let us now what you find out about it all.

Finch

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update from appointment

Post  zarli on Tue Sep 10, 2013 11:07 am

Hi lovely ladies,
I have no news on nerve trapped or other?? I saw 3 specialist a psychologist, physiotherapist and a vulva pain specialist. It can get rather confusing and information can change a little from each person, nerve fact they tell me is my nerves are inflamed and it is tight muscles that are the cause so I should do physio to correct this (tried this 5 times). I am feeling rather dejected today although I insist on keeping a positive attitude. I would love a doctor (well I don't wish vulvadynia on any one) but yes I would love a doctor to suffer this condition so they could experience what we all go through, as at times I felt like they were so out of touch of a woman's mind that has this condition and that they had no idea what all the medication does to us, at the same time I appreciate there help!!!
I was sent away with more cream another to add to the list!! I am now taking Lyrica, nortriptaline, valium, amitriptyline cream and diprosone cream.
I have low pain while taking all of these which I am grateful. I do how ever suffer terrible constipation, bloating and am 20 kg heavier than 5 years ago, but I am in LaLa land so its not that bad!!!
I am not religious at all and have to confess I said my first prayer or what ever I can call it to who ever is up there or down there last night going to bed....." please god if you are up there, feed the starving, house the homeless and give rapist, murders, child abusers etc vulvadynia" I guess I have just wished it apon others.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Tue Sep 10, 2013 8:54 pm

Thanks for updating despite no definites on nerves. I gained 2 stone from the Lyrica but have managed to lose one while still taking it with Slimming World (done from home using facebook groups for recipes) and I'm still working on that second stone so it is possible to lose weight but it does come off slowly. For constipation I take Magnesium Oxide tablets, I buy them from Holland and Barrett and take 2 in the morning and one in the evening and as long as I drink enough water I very rarely get constipated now. Worth a try Wink  And remember all physios are not created equal so some won't know enough to help and any clenching done in between sessions (I do this ALOT) undoes the trigger point work so could be you haven't yet met the right physio. Loving your positive attitude, keep it up! Very Happy 
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thanks sarah

Post  zarli on Tue Sep 10, 2013 11:33 pm

Thanks Sarah I appreciate your great advice. I did try magnesium about 4 years ago for the nerve pain but haven't since so I will get them again, do you remember the lady that was selling that book called ' I cured my vulvadynia naturally and so can you' ? Well she said magnesium in high doses worked for the nerve pain but no such luck for me. I would love to know more about your history with vulvadynia is your story on this forum? How has it affected your life etc...? Sorry but sometimes I feel the need to just communicate more with fellow sufferers....guess it makes me feel less alone in this journey or life sentence as it some times feels like..Rolling Eyes 

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Wed Sep 11, 2013 5:53 pm

Hi again zarli, I take magnesium for constipation because in high doses it gets excreted out through the bowel and relieves constipation, I actually found out about it by stumbling onto an IBS forum where lots of members were using it. It has to be the oxide variety through to work.

My life is badly affected by Ehlers-Danlos Syndrome Type 3 along with Fibromyalgia so the V on top hasn't helped much and in fact ended my 13 year relationship but that was a couple of years ago now so I'm pretty much over that! Mine is definitely a pelvic floor issue as my pelvis is badly affected by my EDS and very loose and unstable so at the moment I'm trying prolotherapy on my pelvic joints to try and stabilise it enough to start releasing my PF. Aka going round in circles!! My V is unprovoked and constant but it started as provoked only and I wish I'd taken it more seriously then and not let it get worse. I had a resting tone of 20 last time it was checked so if you consider 2 or under is normal it's pretty obvious what's going on with me! Shocked  I have a great physio though who is helping keep my pelvis aligned while I have prolo and on stand by should I ever get stable enough for her to go for it and meanwhie I'm trying to correct my lousy breathing patterns and posture and learn not to clench all day long so I'm still busy with it all. My story is buried way back because I joined when the forum first started and I can't recall what title I gave it!! It's been 3 and a half years so I think I can be forgiven for that!! Laughing 
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thank you

Post  zarli on Thu Sep 12, 2013 11:49 am

Thank you Sarah for responding, you certainly have had a lot to deal with and its a credit to you how positive and proactive you remain. I also suffer from fibromyalgia that came after 'V' and it has certainly made 'V' worse. I have never herd of EDS but I'm going to have a research of it out of interest. I wish 4 years ago instead of thinking amil medication had control of my 'V' and I thought if I slowly went off them it would all be ok...bad mistake but you live and learn!! I am a very positive person and will fight to make my life the best it can be. The best thing is at least I do respond to medication for that I am grateful. All the best to you Sarah and I'm so glad your on this forum your wealth of knowledge and attitude is very much appreciated.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Thu Sep 12, 2013 9:15 pm

Thanks zarli it's quite a rarity to feel useful when you're literally falling apart!! Very Happy 
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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  zarli on Fri Sep 13, 2013 10:57 am

Ive had a terrible day vulva pain disgusting, burning heals, aching all over and hard day at work. I was telling myself I'm falling apart all day until that was making me feel very depressed so I told myself ...im here im alive and I have to keep moving forward for my children I want to have quality of life. Its bludyy hard some days that's all there is to it.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Fri Sep 13, 2013 11:49 am

I really mean literally falling apart, if you look up EDS and all the joint dislocations we're prone to you'll see what I mean!! Do you work standing up? I do and when I struggle with it I grip with my glutes and clench my pelvic floor which in turn seems to make my burning feet much worse.
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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  zarli on Sat Sep 14, 2013 11:38 am

Sorry Sarah my last post was not ment to offend you at all or make you feel bad in any way. I was venting on my own bad day which I thought might make you feel less alone. It was in no means referring to your falling apart with EDS and it makes me feel quite sad that it may have hurt your feelings, so once again I do apologise. I do work standing up all day my shifts are 12 hours so yes by the end of the bad days I am totally exhausted and frustrated, I guess we all have our own problems to bare with, I only wish you all the very best in finding any relief you can.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  Sarah001 on Sat Sep 14, 2013 2:02 pm

You didn't offend me at all zarli, I just wanted to clarify what I actually meant. Wink Very Happy 
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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  burningturning on Wed Oct 02, 2013 9:03 am

zarli wrote:Hi All
Just wondering if any one else suffers from painful burning heels/feet when unprovoked vulvodynia is present?
Hi Zarli,
I strongly recommend you to go and see a neurologist since burning feet or leg is the most popular symptom of bulged discs in lumbar spine. You may need to have a lumbar MRI.
Take good care.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  tinkerbelle2 on Tue Oct 22, 2013 2:18 pm

This is odd, I sometimes get burning soles and lower back pain. Interesting!
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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

Post  ringostarr26 on Fri May 09, 2014 11:48 pm

I too get burning feet when i get a flare up...like right now unfortunately. Most doctors i have been to say it is unrelated but I obviously do not believe that. I truly believe it is nerve related, hopefully doctors will figure it out one day so we can all be pain free and enjoy being women.

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Re: HAS ANY ONE HAD PAINFUL FEET/HEELS WITH VULVODYNIA?

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