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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 …

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

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 …

Comments: 6

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 …

Comments: 3

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). …

Comments: 0

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


I'm new here, I'm so scared :( looking for girls who are new in this

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I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Wed Dec 02, 2015 7:28 am

Hi everyone, I'm from Poland, I'm 28 and I think I have vulvodynia. It all started with a bacterial infection. There is no infections anymore and I'm still suffering, painfull bladder and painfull vulva, it lasts already 8 months. Hard to get any support in Poland, hard to get to a good doctor... I am so so scared, that I will suffer for the rest of my life, that I will end up alone, no man, no children, just misarable life, I'm so scared if I tell my partner - he will leave me. I can feel only a strong anxiety now, I'm week, can't eat. I'm afraid of vaginas sex, I can have it, but after I feel terrible and so much worse. I'm afraid of depression also, because I don't know if I will be able to fight it. I will be glad and happy to talk to somebody here, has anyone here got vulvodynia after a long infection and taking many medicines?
Kiss
Ewa

Ewa

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Wed Dec 02, 2015 4:49 pm

Have you tried eliminating all potential problem foods and drinks from your diet like caffeine, alcohol, chocolate, artificial sweeteners, citrus fruit and juice, vinegar (basically anything acidic or bladder/urethra/vulva irritating)? Some people find a low oxalate diet helps. If you search low oxalate diet you can get a list of high oxalate foods to avoid.

Simple changes to washing detergent and soap can sometimes help too. Avoid all fragranced soaps and washing powder on your clothes. The same with toilet paper and sanitary towels - use unscented ones.

My problems also started with a urine infection and thrush infection. It seems to be quite common that vulvodynia starts with a simple infection which clears up but leaves pain behind.


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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Wed Dec 02, 2015 5:55 pm

I'm using soap for babies, cotton underwear, not tight trousers, only fresh water for cleaning etc. About low oxalate diet I just read and started few days ago, but I guess it needs more time. Do you know about any herbs or suplements that might be helping? Is it any better with your problems? How long are you suffering?
Kiss

Ewa

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Wed Dec 02, 2015 9:19 pm

It's best to persevere with the low oxalate diet for at least three months. I didn't find it much help, but I also have muscular issues (tight pelvic floor muscles) contributing to my pain. I've had the problem for 17 months now, but not as bad now as when it first started. Cutting out acidic foods has helped reduce frequency of the burning I get after emptying my bladder.

I've read that aloe vera capsules and marshmallow extract can sometimes help with a painful bladder. I haven't tried marshmellow extract. I tried aloe vera but only for a month. I think I need to try it again for longer.

I hope you find something that helps you.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Thu Dec 03, 2015 3:55 am

Do you also have a worse and better days? I don't know how to handle it when it's getting worse again. I'm just overwhelmed by stress. Thank you for advices.

Ewa

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Thu Dec 03, 2015 10:57 am

I definitely have worse and better days. On the better days, which now are about 50% of days, my average pelvic pain is 1/10 or maybe 2/10. On the worse days (about 25% of days) it is maybe 4/10 going to a maximum of 6/10. (I rate my pain quite conservatively as I also have a chronic sensitization syndrome which affects most of my body not just vulvodynia. To my way of thinking, nobody could remain conscious with a 10/10 rated pain, so when people say their pain is 10/10 I'm sceptical.) On the other 25% of days it is somewhere in between.

It is very stressful to have any persistent pain. Vulvodynia is even worse because it's in an area of the body that it is difficult to talk about with people. For example, all my friends know I have back/neck/leg/head pain. But many have no idea what I have been suffering with vulval and urethral pain. I think it's important to be able to talk with a partner or trusted friend about how you feel. Even if they can't fully understand because they haven't experienced it, it can be good just to talk about it.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Thu Dec 03, 2015 4:00 pm

My scale of pain is from 1 to 4, one is almost perfect, 4 is hard to stand, past two months I had 2 everyday. Today my pain is 4. I had this problem for eight months now, and I already don't remember my old life Sad Do you think your pain will gone completely one day? Will it be perfect like it was? Or for the rest of our lifes there will be something wrong there... Sad I had headaches also, migraines. I tried to talk with my mother and sister, but everybody has some problems and that their problems are the worst...

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Thu Dec 03, 2015 4:53 pm

I also find it difficult to remember what I felt like before this pain started Sad . I'm not sure I believe I will ever be completely cured of it, but I do believe it will be better than it is now. I have to believe that or I would get too depressed. The pain specialist I saw in the summer said that neuropathic (nerve) pain often goes away after a couple of years. So I think ahead to summer 2016 and really hope that by then it will be mostly or completely better. Many people do get completely better - but once they are better they don't visit websites like this one, so the messages on websites like this will always be skewed towards the negative because most people are posting messages to ask for help or share advice. Try not to be too discouraged when you read about people that have had the problem for a long time. It doesn't mean that you won't ever get better. (I know it is difficult not to get depressed. I've had some really miserable days.)

The worst thing, for me, is the disruption it causes to my life: if it hurt but I could still do everything I wanted to do then it would be easier to cope with. I just want to be able to sit on a chair for more than two minutes without having to take a giant foam cushion everywhere(!) and I want to have a full relationship with my husband again.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Fri Dec 04, 2015 3:14 am

Have your other pains also started at the same time as vulvodynia? Are you able to have sex sometimes? Without suffering after... I think it would be easier to stand if I were single... My partner keep telling me that he will wait, that he is patient, but he also thinks that I am panicking too much... I'm sure his patience soon will be over.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Fri Dec 04, 2015 9:02 am

No, I had my other pains for over a year before the vulvodynia, and the headaches for years. Sex - no, it's just not possible at the moment. Luckily, I have a very supportive husband. Communication is very important. If your partner loves you and is the right person for you then he will support you through this. It may not be easy - he's bound to get frustrated and impatient at times as he is only human - but talking about those feelings is important.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Fri Dec 04, 2015 7:12 pm

What kind of headaches do you have? Migraines? I read that women with vulvodynia suffer also for migraines... What is this other pain feels like? I am trying to be very honest to my partner, telling everything, I guess if he leave me it won't be my fault.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Sat Dec 05, 2015 3:48 pm

Migraines, yes. My whole CNS is pain sensitized.

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