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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 …

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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


Hi Im from Australia :)

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Re: Hi Im from Australia :)

Post  Mouse on Tue Feb 15, 2011 11:16 pm

Hey everyone,

I think PT is the American version, we kiwis have physio.... if we are really lucky!

Stompy, mine has gone the same way with the lovely pelvic floor probe and not even dinner and a movie first!!! Awkward because she watches my face to see when the pain tapers off. Hmmmm. I get REALLY anxious before I go.

I have now aggravated my sciatic nerve which runs from the backside down the leg. This is because I had to adjust the way I sit to accommodate the V and it made my other parts angry. I get physio on both now, I'm not sure which is worse to be honest. I've also found I really tense everything up and it's a process to relax when she says. I think I've relaxed but it's not even half way there.

Louise I'll meet you at the Melbourne clinic =)

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Re: Hi Im from Australia :)

Post  Sebby (Admin) on Tue Feb 15, 2011 11:50 pm


Thanks for the book title stompy I will deff look into it!

I do wish we uk girls had such a clinic!!

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Re: Hi Im from Australia :)

Post  noni on Wed Feb 16, 2011 12:03 am

Haha...sorry about the PT ref...<<

Just wondering...what does it mean when they say to ``drop your pelvic floor``??? Anyone know?

How about at home techniques? Or is it a must to see a therapist one on one?

Thx Smile
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Re: Hi Im from Australia :)

Post  jules on Wed Feb 16, 2011 3:01 am

welcome to the new ladies. i'm so busy visiting our Vulvodynia Facebook group page that i don't make it to this forum as often as i used to. i'm glad you all are finding commonalities. here in the US we do call "it" physical therapy. i had no idea what a physio was when i first joined this site. they do the same thing as your people..biofeedback, dilators, fingers...etc. Me not so interested in it anymore..didn't like for my "area" to be messed with. today, i'm just dealing w/ the raw skin feeling and it's bright read...now you have a visual. hmm..maybe it will get better soon...it goes in waves. if you ladies are not on facebook w/ us...please join. it's nice to have friends who "understand" your pain. k...ttyl

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Re: Hi Im from Australia :)

Post  Sarah001 on Wed Feb 16, 2011 8:23 pm

Noni when they say drop the pelvic floor it's the same as when you relax it to pee, takes a bit of getting used to and hard to do it all the time like we're supposed to but practice makes perfect.
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Re: Hi Im from Australia :)

Post  noni on Thu Feb 17, 2011 1:56 am

thx!
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Re: Hi Im from Australia :)

Post  Frustrated and had enough on Tue Aug 23, 2011 10:18 am

Hi Emma,

How are you going with the cream you are trying? I have heard of it and would like to get my hands on it, just having a little trouble (got a referral to a specialist that knows nothing about Vulvodynia..not so helpful). Is it worth trying it?

I'm 30 and have had Vulvodynia for about 10 years now! It took a few years before I was diagnosed and then some unsuccessful treatments. I keep getting thrush which means I can't treat the pain I am having until I'm clear. Every time the thrush goes, sure enough it comes back. I found that physio helped the pain, but gave me thrush. So had given up and just dealt with it all for a few more years. Recently I realised I'm not getting any younger!! I got engaged a couple of months ago. I have a lovely man who has been really understanding, even though I know it's very frustrating for him as I have no desire to have sex..it just hurts too much and then I just get depressed! We would like to start a family in the next couple of years so really wanna get rid of this pain!!!! I think I'll try get a referral to angelique's dermatologist, she's like 3 mins from my house!!!!

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Re: Hi Im from Australia :)

Post  Sarah001 on Tue Aug 23, 2011 5:10 pm

Sorry if I'm being a bit dim but how did physio give you thrush??
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Re: Hi Im from Australia :)

Post  Frustrated and had enough on Fri Aug 26, 2011 7:46 am

Hi Sarah001,

That's a great question..if only I knew the answer!! It seems after any little bit of exercise or movement down there the thrush flares up again. It may not actually have anything to do with it, it may just have been coincidence?

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Re: Hi Im from Australia :)

Post  emma on Thu Nov 24, 2011 11:47 am

Hey ladies,

Sorry that it has taken me so long to reply. I forgot that i had started this thread and can i just say that although as frustrating as this condition is, i think it has definitely made all of us better people! Im strong and confident and im sure you all have that strength too!

So, I have recently had the surgery. I was fed up with having absolutely minimal or no results from various treatments and i noticed some of you have asked if the cream worked, well as you can guess - it didnt make a difference, only frustrated me more. You know what, I was sick of getting excited over a new revalation that could cure me and it didnt. When i first went to a doctor and mentioned that i had a problem to this day has been about 4 years. Long process, a lot learnt.

So yes i have had a surgery. Could hardly walk/sit/lay/sleep/breath without my body feeling like it was being ripped apart for 3 weeks.

Totally worth it. Ive had great results and the pain in that particular area - gone! i have a bit of pain higher up but it is getting better as i have just started using the dialators to stretch it out.

Im still wary as i havent got a partner (which is good because im no where near 100%) but Im so glad ive had it done.

I have a question to ask you... How do you handle friends - have you told them what you have?, because the only people who know that i have this condition are my family.... so when my friends start talking about sex, i just hate it. What do you do in those situations because i never lie but its something i just feel i have to lie and make stuff up about otherwise conversation gets akward.

Em xo





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Also in Melbourne!

Post  sophiarp on Wed Apr 04, 2018 12:03 pm

Hi everyone,

I know this post is from years ago - but if any of you are still online, I'm also in Melbourne and got diagnosed late last year. I'd love to catch up with others in Melbourne.

Love and painlessness to you all!


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Re: Hi Im from Australia :)

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