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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» 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

» 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 …

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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.

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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



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.

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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 …

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New girl on the block

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New girl on the block

Post  Zazu on Tue Apr 05, 2011 3:16 pm

Hi everyone,
I've been looking for a good online forum for vulvodynia and this one seems just right! I was diagnosed with provoked vestibulodynia (vulvar vestibulitis syndrome) about six months ago and have been living with it for over a year. I was actually teaching abroad when it started and tried to find help from over five Korean ob-gyns. Here's just a small list of some of those adventures: crouching in a bucket every morning b/c bathtubs are rare, being told to use bee hive glue (propolis) in the soak, having my vagina dyed purple with gentian violet to cure yeast infections. I finally found a scholarly article on vulvodynia written by a Korean researcher who I made an appointment with and all he told me was that it was untreatable. Everything I've read has pointed to the lack of information for doctors in Western countries but there is nothing available to women, at least in Korea who suffer from this.
My partner and I packed our bags and flew home to Canada where I waited six months to see a specialist. She had me try a gabapentin/lidocaine topical cream for three months but it caused a lot of extra irritation. Most recently, she put me on Elavil but I had to stop taking it (even at low dosages) because of the side effects. I've been in physio for a few months, although we keep having to stop pelvic work to focus on chronic lower back pain and knee pain. I'm going back to the specialist on Friday.
Any suggestions on where I could go from here would be appreciated so much!
Thanks!
Zazu

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Re: New girl on the block

Post  Sebby (Admin) on Tue Apr 05, 2011 6:06 pm


Hi Zazu and welcome to the forum

Wow they sure have zany treatments in Korea! I can't imagine having a purple vagina! although it is often red!

Its terrible how so many doctors lack knowledge about this condition. More research and awareness and treatment is so needed.

I think physio is definitely a step in the right direction. I too have lower back pain and have had since I was little on and off. You will be suprised how many women with Vulvodynia do have this!

I couldnt take Amitriptyline as I was on Citalopram (SSRI Anitdepressant) for panic attacks. Im only on 10mg of Cit now

So instead I have tried Pregabalin (anticonvulsant) which is also used for neuropathic pain like Ami. I am on 300mg. I had to build up to 300mg slowly as it does make you feel dizzy and drunk when you first start it! I could have sworn I was starting my day on a bottle of whiskey lol but I managed it and still managed to go to work.

The side effects have worn off now and I am finding the flare ups are shorter and the average pain level a little less.

It might be worth giving it a go

I also only wear 100% white cotton knickers and wash them on a high temperature with no detergent. I also only use water and no soap of any kind on my vulval area.

For sitting I have just bought a foam doughnut cushion (with a hole in the middle) this means there is no pressure on the vulval area when I sit down and is perfect for my computer desk at home

Oh I nearly forgot! I am doing pelvic floor biofeedback as issued by Dr Glazer from www.vulvodynia.com. It will take many months before I know if it is effective.

Take care




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Re: New girl on the block

Post  ves on Tue Apr 05, 2011 10:24 pm

propolis and gentian violet? Jesus!
Hello there Laughing

I used to put gentian violet (along with hydrochloric acid) in horse's hooves to cure thrush but it's not quite the same thing. At least they didn't give you the acid Shocked

I too have provoked vulvodynia (10 years now. yay) And have found no treatments that either improve it or make it worse... so far. That said I haven't had any physical therapy at all for it so on the advice of some here I've now booked an appointment with a gyno who specialises in vulval disease/pain and also pelvic floor, so she might give some advice. Looking forward to seeing what results Sebby gets with biofeedback as well.

Anyway welcome to the forum!

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Re: New girl on the block

Post  Aussie on Wed Apr 06, 2011 4:08 am

I have had good results with biofeedback. My specialist said I no longer need it as I can control the muscles well without it. I just need to concentrate on doing that constantly and legnthening the muscles.

Give it a go! I can relax muscles now, I never even knew exsisted

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Re: New girl on the block

Post  lisa98 on Wed Apr 06, 2011 9:03 am

Hi- welcome to the forum.
I'm also doing physiotherapy, and doing the exercises recommended in amy stein's book, Healing Pelvic Pain. I too have lower back pain that I have been focusing on before getting to the pelvic stuff with my physio.
However, I think daily internal massage has been useful-possibly not because of the releasing of muscles but rather the contact with the skin- it seems to be making it less sensitive. I use sea buckthorn oil as a lubricant for this and perhaps that has improved the health of the skin, also. I have tried antidepressants but have gone off them because of the side effects and their inefficacy- in particular they made me constipated which made the condition worse, so it was not worth it to be on them. I think dealing with my stress and improving my digestive health are also important steps on the way to recovery. Fingers crossed.
How bad is your pain? what kind of things set you off?

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Thanks!

Post  Zazu on Wed Apr 06, 2011 3:00 pm

Thanks for the welcome!
It's really nice to be reminded that there are still lots of things to try, because it is so frustrating when something you pegged your hopes on doesn't work out.

In terms of meds, I will definitely see what my doctor suggests after amitriptyline and want to explore the Pregabalin (thanks Seby!). @Lisa98, one of the main reasons that the amitriptyline didn't work for me is that it made me constipated too and I found that was too painful during my periods (plus the debilitating brain fog). Did you find that it was most painful during your periods? Even without the ami, I've found that my periods the last three months have been a lot more painful (cramps, bowel movements), as well as a lot of uterine pain after orgasm (only 1, in a long while, but now am too afraid even for outercourse). I've been worried about endometriosis or uterine fibroids, or could this just be another complication of PVD/VVS?

Biofeedback is something I've been interested in for awhile. It's fallen down the list of priorities - I'm trying to get back to physio for pelvic pain first, and maybe then try biofeedback. Do you have to go to some kind of biofeedback practitioner? My phyio doesn't do it, I don't think. It involves a dilator hooked up to electrodes and a machine that measures muscle behaviour, right? I'm sure I can read more around on the forum.
Thanks for the suggestion on the book Healing Pelvic Pain- I'll definitely look into it (is that where it recommends daily internal massage?).

The actual pain is worst with penetration, and that means I haven't been able to have sex for just over a year. We just started seeing a sex therapist, but that's definitely been the hardest part. I have some day to day irritation - putting in tampons can hurt but isn't impossible, wearing pads, sitting in pants for a long time, walking. The number of lifestyle adjustments has been crazy and sometimes impossible - Canada is too damn cold for skirts in the winter! or searching for sensible shoes that fit orthotics but are also good for skirts at work (on a tight budget!) because of the back pain is enough to drive you mad. Anyway, I can tell this is turning into a rant. Thanks to anyone out there generous enough to read all of it! Smile

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Re: New girl on the block

Post  Sarah001 on Wed Apr 06, 2011 4:08 pm

Hi there, orthotics? Are they for pronating, supinating or a leg length difference? I'm betting you're going to fall into the pelvic misalignment/instability group of us on here which can set the V off too. Lower back pain, knee pain, needing orthotics it's all ringing bells for me!
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Re: New girl on the block

Post  Mouse on Wed Apr 06, 2011 8:26 pm

Hi and welcome Zazu,

I'm sorry you have ended up here but you will come to know that this is an amazing group of fabulous women!

I tried Gabapenten after the Ami, I think that's in the same family as the pregab. My success with drugs was fairly limited, my brain wouldnt give in. Youngest child! I would say though that anything is worth trying because it may work for you.

What has worked for me is therapy. I'd put this at the top of the list. You know this isn't in your head but it's a lot to deal with. Chronic pain erodes everything. Sorting my head gave me the strength to fight this from every angle. So then I threw in diet modification, pelvic floor physio, stress reduction affraid meditation, becoming social again, sitting in the sun (aahhh it's autumn now) well I tried anything that would give me endorphins.

I have generalised unprovoked so pain all the time. I worked really hard on getting my sexuality back - I've now found that can be fleeting. So it's a work in progress. The therapy made me deal with things I've pushed so far down it's been like coughing up furballs pale It's nice that they are out but it's changed how I feel about being in a relationship and I'm married to the loveliest man (well mostly, he's only human).

Have a really hard look at everything you put in or do with your body. It's a healing process. I limit coffee and alcohol (hmmm well mostly again - but vodka, soda and fresh lime get me through). I gave up sugar and that wasn't easy. I'm already gluten free because of the other joy in my life. I'm treating this as a healing phase so have tackled everything because I don't want to be doing this forever.

Oh and it's working! I am currently 90% painfree.

I have a lovely specialist but she only had the same old solutions so I took my recovery into my own hands. Just got pissed off with waiting for the cure to turn up. I think amongst us we will work it out for ourselves. If you haven't had your pelvic floor checked, try that, it can make a huge difference.

Good luck with your recovery
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Re: New girl on the block

Post  Zazu on Mon Apr 11, 2011 12:58 pm

Thanks again for all the encouragement and suggestions! I went to see my gyno on Friday and she put my on gabapentin because I couldn't tolerate low doses of the amitriptyline. How does gabapentin compare to pregabalin? She also recommended that I try using the dilators for 20 min per day, as well as keep up with the pelvic physio. This sounds like a lot of poking and prodding down there but it seems to have helped other ladies so it's worth a go Shocked

I've also tried a lot of lifestyle overhauls too, along the lines of what you do Mouse. I saw a naturopath who put me on an anti-yeast (no sugar, no refined flour, no peanuts, no vinegar) diet which I did for awhile. Since then I've tried to modify it to a more livable one but it's made me have a lot more energy and get sick less.

At one point my physiotherapist asked what I do to relax. I said - go out, see friends, watch movies, read, etc. She said "So you're really good at distracting yourself but what do you do to relax?" That made me realize the mind-body connection is probably affecting the V so I've tried some meditating and guided visualization type stuff. I just find that along with all the Vulva-hygiene lifestyle changes, all this is hard to stick to on a regular basis. That's the most frustrating aspect to me. It's so true that it takes over two months to start a habit (and so many new habits!). Patience is the hardest one to form tongue

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Re: New girl on the block

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