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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


My almost 4 year old was diagnosed today

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My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 11:50 am

Hello

This morning my daughter was diagnosed with Vulvodynia. She has been suffering pain since she was 18months and it has taken over two years to get referred to a paediatrician who diagnosed her.

Her symptoms have been intense pain, normally at night. Now she is older she can tell us about it and she says she feels like her 'front bottom's is on fire. She is SO SO distressed when happens. Nothing consoles her. It is really upsetting for anyone who is with her as well, my poor dad was babysitting during one epidode and had to be talked out of calling an ambulance.

Whilst she has had some pain in the day, it normally only occurs at night. Her only relief is a cold pack between her legs, but that only helps a bit. Our GP ruled out UTI, thread worms and thrush.

The paediatrician this morning told me that she was very likely to grow out of it but to come back if it gets worse. I left feeling really reassured until I came home and Googled Vulvodynia....nowhere mentions growing out of it. I am really worried for my daughter now and her future well-being and relationships.

Does anyone have experience of very young children diagnosed with this?

HazelsMum

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Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:20 pm

I'm sure you've ruled out irritants, but I wanted to throw it out there just to be sure. Below are some of the top ones that come to mind, and just remember, it can take months or years for a reaction to show. So don't rule out things you've been using on her for a long time.

- Wipes: I was using flushable wipes for MANY years before I started to have a reaction to them. If you're using them on your daughter, it may be a really good idea to stop for a month or so to see if things improve.

- Laundry Stuff: Detergents, dryer sheets, fabric softeners, etc. Even the ones that say they are "gentle" contain tons of chemicals. Check out this website for the ratings of common laundry products: http://www.ewg.org/guides/subcategories/49-LaundryDetergentHE

- New Clothing: I have an allergy to unwashed new clothing where I break out into a bodysuit-type rash if I even brush up against unwashed clothing. I now need to wash my clothes at least 3 times before wearing them.

- Bath Products: Shampoo/conditioner, soap, body wash, bubble bath, etc.


I'm sorry your daughter is going through this, and I hope she finds relief soon.

emalita

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Re: My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 4:40 pm

Thanks for replying. My daughter has quite bad eczema so we are already pretty carefully with detergents chemicals in the house. She has special soaps etc in the bath. We've found no relationship between what's she's done during the day .(swimming, bath, what's she's eaten) and when she has an episode. It is so frustrating. I really want to be able to pin it on a particular trigger but haven't been able to identify one.


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Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:51 pm

My reactions didn't show themselves for maybe 24-72 hours after coming into contact with the irritant. So make sure to be expanding your daughter's symptom journal to things that she's come into contact with the last 3 days or so since chemicals have a sneaky way of hanging out in the body for a little bit before setting off a reaction.

It sounds like you've already done all this, and I'm sorry if I'm telling you things you already know. I just know how frustrating allergies can be since it took me so many years to identify my triggers because they were never as "obvious" as doctors and the internet made them sound like they should be  Wink

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Re: My almost 4 year old was diagnosed today

Post  Toobusy9561 on Fri Aug 26, 2016 9:52 pm

How did the doctor rule out worms?

I ask because there is an old thread on another site about children having pain, mostly at night. Once the lights are out. Many of them did the "tape" test and was negative but persisted and were able to see a worm. Apparently, they come from the rear but move up into the vagina as well and that's where the pain is. Some would wait until their children fell asleep and then flick on the light and do a quick check but others said to wait until they are sleep, use a flashlight and look because the light makes the worms pull back in so you won't see them.

Their descriptions of their children's symptoms sounded like yours. Some even had it for years.

It was also suggested to try a worm medication anyway just to be sure. These girls were in pain but once they treated for worms, they were fine.

I'm not sure if we can post off site links. If we can, then I will post it so you can read about it.

If not vulvodynia, then possible Lichen Sclerosus? Children are known to get this. Usually the vulva skin will have white patches or areas though.
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Re: My almost 4 year old was diagnosed today

Post  Pavloviandoggy on Tue Oct 04, 2016 3:27 am

Has the doctor ruled out lichen sclerosus? Vulvodynia-like symptoms can present themselves when girls are really young, but usually don't get diagnosed until later in life.

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Re: My almost 4 year old was diagnosed today

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