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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 …

Comments: 7

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: 2

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 …

Comments: 1

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 …

Comments: 22


Life turned upside down!!

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Life turned upside down!!

Post  helen4444 on Fri Oct 08, 2010 8:17 pm

Hi all, I would not wish vulvodynia on my worst enemy but it is such a relief to find others who no exactly what I have had to endure for nearly 2 years.Ironically, I was working as a research nursing sister in pain management focusing on clinical trials of new drugs. Like many sufferers mine started as thrush, used all the usual stuff ended up at GUM clinic given aqueous cream, told to have salt baths.Ended up in A&E to be given anaesthetic cream which just made burning worse.I was struggling to sleep and drinking a litre of vodka over a 2 day period for the agony.Finally after many trips to GP my husband decided enough was enough and we paid for me to see my fab gynaeo Mr Lane who diagnosed me in 10 mins ,was put on amitriptyline and then Pregabalin ( ironically i was lead nurse when this drug was on trial).I agree with others that for this to be effective you need to be on a dose of at least 100mg twice a day and higher if tolerated.
I have been close to taking my own life, my kids have had to put up with alot, my husband even more ( no sex now for nearly 2 years ) .I have lost my job as alot of my time was spent sitting at a PC - nightmare! My life is so resricted now as I know what sets the BAD pain off eg sitting on highback chair, driving etc.It was also felt that I could not focus on my high stress job so was finished.
I have felt so alone with this thing and it is reassuring to know i am not on my own.
Sorry for this long winded intro but I wish you all if not a cure then relief with whatever treatment suits you best. If I can help anyone with any nursey advice please feel free to ask, I really miss been the nurse I hate been the patient.
Love and best wishes to u all Helen xxxxxx

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Re: Life turned upside down!!

Post  Mouse on Sat Oct 09, 2010 12:04 am

Hi Helen,

I'm so sorry that you are in pain. It really is incredibly difficult to try to appear normal when you have this silent illness robbing the enjoyment from your life. My husband is amazing but when I'm having a good day he thinks that means I'm cured! And when I groan when I get up (this happens a lot)or grimace a bit he then thinks it's life threatening.

I'm relatively new on here as well and have never really posted "my story" as such. I can't even get my timeline sorted as it's been a blur of constant ill health for the past year. I did however have thrush after taking antibiotics earlier this year but can't even recall what the hell that was for! I had surgery in February on two bartholins abscesses and have had pain since then. After the surgery "pain" went away the vulvodynia first presented as PGAD. I have generalized unprovoked, it would have been particularly cruel if I'd had another version with the PGAD. I no longer have the arousal (makes it sound fairly glamorous when it's really a bloody nightmare) I "just" have constant pain which now seems to fit with my cycle. At least 4 horrid days at the start and in the middle.

I hope you are finding some solutions. I too went very low before I decided I wanted my life back. On good days I can see that, on bad ones not so much. I was also fortunate in finding a fabulous sub specialist and was only treated like a crazy person for about 4 months. I have a therapist who keeps me sane and a great GP. I feel very lucky about that. Originally I discounted seeing my GP because my Gynaecologist was less than helpful (that's a whole other story) but when I finally went to her she knew all about it! I was gobsmacked and a bit peeved I didn't go sooner.

It's reassuring to know there are people who understand. I'm about to have lunch with one of my GF's, I know that someone who hasn't had a chronic pain disorder has no idea what it's like so I tend to keep details to a minimum and even then I feel like I'm whining. Thank goodness for forums like this. Take care. Kia kaha.

Mouse

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Re: Life turned upside down!!

Post  Sebby (Admin) on Sun Oct 10, 2010 9:03 am


Welcome Helen

I too have had this for nearly 2 years now. Im going for a nerve block soon as Im on citalopram and buspirone for anxiety so I have to be careful about taking other meds.

When Im in bad pain I do take 15mg of codine x 2 (co-codermol) its getting me through the bad patches so I try not to take it unless I really need it.

I managing to work but it is difficult, I too work at a pc but I have a soft cushion that I sit on and get up regularly for breaks.

Im actually thinking of trying to cut down on the citalopram in case I do need to switch to Amitriptaline in the future but I get side effects and the anxiety has been bad over the last couple of weeks.

I too have felt like I didnt want to go on living and that i didnt have a future. I do hope we can help to support you and I pray the treatment works for you

Godbless
Sebby
xx
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Re: Life turned upside down!!

Post  naomi on Sun Oct 10, 2010 6:06 pm

hi sebby, have u considered pregabablin?

http://www.lyrica.com/

just my therapist put me on this for anxiety but it is now used for nerve pain too.

im no doctor so check out the link above, pregablin is also called lyrica.

ohhhhhh man what a friggin weekend Sad went to a wedding fair at the NEC with my future sister in law....a whole day packed full of girls getting all excited etc. It was sooooo hard not to burst into tears. I feel like im being left behind. All my other close mates have boyfriends now and listening to them and their sex lives......such a hard weekend. Today Ive spent the day in bed just crying and feeling so low. I have to force myself to do these things (go to wedding fairs, visit friends with babies, go out on the tow) because if i dont i isolate myself completely and dig my self in deeper mentally.

Helen i know what u mean with the vodka, i drink it too numb the pain, its the only thing that seems to take the soreness down...either that or im so pissed it numbs my senses Sad I have thought of ending it all, the only thing that stops me is the strong feeling that I DESERVE A DECENT LIFE LIKE ALL MY FAMILY AND FRIENDS! and I want may FAIR SHARE DAMMMMMIT!!!! I dont want to die! just want this damn thing to eff off.

I really wish we lived closer and could physically support each other. You guys are the only ones who really truely understand. It feels like my lifes in knots and i cant undo them.

Thinking of u guys, hope u had good weekends xxxxxxxxxxxxx
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Pregab is definatly worth a try

Post  helen4444 on Sun Oct 10, 2010 6:36 pm

Hi Sebby,
Thanks for your reply.Has your Gyno told you to use codeine ? This and paracetamol don't really touch neropathic ( nerve) pain.I can't tell u the difference Pregabalin made to me especially as i increased the dose. There are other meds like it too, your medic should know. My Gynao asked the consultant i actually did pain trials 4 and she said it is really effective.She travels the world lecturing on pain management and has written books - she really knows her stuff although she never contacted me directly even though she knew what i had - thats some dr's 4 u !!!!!! i asked about pain block injections and apparently some only work 4 48hrs which to me is not worth it,my source may be wrong but it's worth checking.
Time for a medicinal vodka now.
Love Helen xxx

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Re: Life turned upside down!!

Post  Sebby (Admin) on Thu Oct 14, 2010 8:43 pm


Hey guys

Im not sure about pregabalin as my mum was given it once along with another med and she felt really anxious.

Im a bit on the highly anxious side at the mo so will try it when ive settled down more as I think a change in meds mite not be a good idea right now

I read about codine on a nerve pain leaflet..I does work for me as I prob relaxes me enough and releases those endorphines. I find the pain less raw and acute with it. I only take it if pain is bad tho

I have been told the block if it works should last for 6 weeks..I will wait and see

Sebby
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Re: Life turned upside down!!

Post  jules on Fri Oct 15, 2010 3:07 am

hello all...i am now at the top dose for Lyrica. I don't feel anxious. but, it does different things to different people. i have had no side effects. i am on 300 mgs. as for pain meds, codeine won't touch nerve pain. i tried that before. i take Vicodin daily (i'm afraid to say). it does take the edge off..but if the pain is hot and burning..it is too late for relief..unless i use a cool gel pack. but..that doesn't last. opiates help block nerve pain..but..you need a strong dose. oxy helps..but, not easy to get a hold of..very addictive as well.

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Re: Life turned upside down!!

Post  elmyra on Tue Mar 29, 2011 6:19 pm

Hi all. I have just been diagnosed as suffering from Vulvodynia by a gynaecologist but like Mouse, I also suffer from PGAD- like symptoms.

When the condition started, I experienced contractions in my pelvic region, which caused me a great deal of pain and discomfort. This has since abated somewhat, but I still suffer from a range of symptoms, including a 'blocked feeling' 'down below', numbness/ 'pins and needles' sensations, pain (which varies considerably in intensity) and throbbing. Sometimes it can feel almost like a minor 'electric shock' and sometimes it feels almost sexual.

This may sound weird but I can actually cope better when the sensations are moderately painful than when they feel more 'sexual' (I also suffer from OCD, which has really latched on to me having these sensations).

I'm worried that my condition might be PGAD rather than Vulvodynia, because I experience both types of sensations. I really want what I'm suffering from to be Vulvodynia, rather than PGAD, because I feel more can be done to help me- I'm scared that if it is PGAD, I'll be stuck feeling this way for the rest of my life. However, I feel a bit more reassured now that I've read Mouse's post.

Has anyone else with Vulvodynia experienced this?

elmyra

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Re: Life turned upside down!!

Post  Mouse on Tue Mar 29, 2011 6:58 pm

Hey hon,

I'm just off to work BUT I will respond in full later today. Don't be afraid that this is PGAD. My lovely specialist says that pain no matter how it presents is pain. My arousal symptoms would alternate with pain and one would be a relief from the other. Eventually it settled into pain all day every day and now I'm almost pain free. It's a journey but I think it's possible to beat it!

Talk soon

Mouse

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Re: Life turned upside down!!

Post  elmyra on Wed Mar 30, 2011 2:27 pm

Thanks for replying to my post. I'm so glad that you're so much better XX.

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Re: Life turned upside down!!

Post  ves on Sun Apr 03, 2011 7:36 pm

Hi all, and hugs to Helen- sounds like you've been through a rough couple of years. It really does help talking to this lot!

Naomi, interesting about pregabalin (I'm currently on Citalopram for anxiety but not loving the side effects) and am so with you on the occasional bitter rage!

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Re: Life turned upside down!!

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