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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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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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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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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
xx.

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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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