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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 …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

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 …

Comments: 4

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 …

Comments: 10

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 …

Comments: 1


Exercise ???

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Exercise ???

Post  zarli on Sat Dec 14, 2013 9:25 am

Hi Girls
Before 'V' I used to walk 5km everyday and was a healthy weight...6 years on I've put on nearly 20kg which is frightening and I can't exercise at all. Every couple of months I have a head rush and try to walk very slowly BUT the next day I'm in excruciating pain. Does any one else have trouble with exercise ???
Also my feet get just as sore as my vagina they burn and the pain is throbbing.

I feel like I don't know what to do anymore...my life is very hard going at present.

I mean the meds control the pain as long as I wear loose pants, don't sit for long, don't stand for long and don't exercise.
I wonder how fat I'll end up being ???
I know I'm lucky the meds work but I just can't imagine what my life is going to be like in another 5,10,15 years??
The pain is so bad at present just from a little walk 2 days ago.

That's my negative rant for the day...sorry.

zarli

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Re: Exercise ???

Post  alessandria on Sat Dec 14, 2013 11:03 pm

Hey Zarli! I imagine it'd be quite frustrating to have things get worse with exercise, I'll see what I can suggest here to help out Smile

1) You can get a lot of the health benefits of exercise from things that are less likely to cause vulvodynia flares. I recommend trying something like yoga or pilates which are virtually zero impact exercises, but still will allow you to maintain your fitness and reduce your stress levels. While things like biking and swimming are frequently totally out of the question with vulvodynia, elliptical trainers are a good zero impact way to get an intense cardiovascular workout.

2) Possibly a totally dumb question, but what do you wear to exercise? I very specifically must wear all-cotton, loose underwear and loose shorts when I exercise, or I will definitely get an increase in vulvodynia pain due to the friction and irritation.

3) The wonderful thing about losing weight is that anyone can do it. Seriously, anyone. It is very hard sometimes to reform how we eat, but I promise you that it can be done. Exercise has been shown by a huge body of research to be non-essential to the weight loss process, even though it has a ton of other health benefits. My recommendation is to use tools like MyFitnessPal or CalorieCount to determine how much you should be eating a day as a sedentary person, and you should not gain weight so long as you stick to the guidelines. (Plus, those apps/websites can provide a very useful opportunity for any vulvodynia sufferer to make a food diary. Start keeping track of your pain levels along with the food diary, and you might even discover that there is a food trigger that causes your pain that you hadn't even been aware of previously.) Even if you're unable to exercise, you can get back down to a weight where you feel healthy and happy with your body, it's just a matter of scaling your food intake down to your new energy needs. I know it sounds like a pretty crappy thing to have to do, on top of already having vulvodynia, but I'm sure you'll find before long that eating healthy and losing weight makes you feel better physically. I know it has hugely helped my pain levels to lose weight; though I still have it, it's not nearly as bad as it used to be.

Anyway, I am so sorry you are having a hard time, I know we've all been there before. It definitely can get better, just do whatever you can to remain positive and keep trying new things, okay?

alessandria

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Re: Exercise ???

Post  zarli on Sun Dec 15, 2013 4:04 am

Thank you Alessandria
I am so grateful for your wise words and the trouble you went to respond to my post.
I have taken on board your advise. I am going to start a food diary.
I just can't work out why every time I have followed strictly to a healthy diet eg. the dukan diet, my vulvodynia neauralgia pain is unbearable. I wonder how psychological this factors on my thinking ?? I lasted 5 weeks on this particular diet I lost 5kg with no exercise but the pain ended up beating me and I gave up. My normal diet is healthy I seldom eat fatty foods although I do indulge in chocolate and breads and pastas at times.

I will look into yoga as I haven't tried this while I have had Vulvodynia.

When I exercise I ware loose pants and I have tried tighter pants but they react the same way. I am just going to stay away from exercise that involves impact.

Once again I thank you for your response, it meant a lot to me while on this journey of hope.
Take Care
Zxxx

zarli

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Re: Exercise ???

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