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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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


My journey - believe it or not it's a fairly positive one!

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My journey - believe it or not it's a fairly positive one!

Post  Georgia H on Tue Jan 28, 2014 12:33 am

Hi Girls,

I'm new here (but not to V)! I've been reading this forum on and off for the past few years and it's helped me greatly. It's taken me this long to actually join up - selfishly, I've never wanted to participate as it felt (in a weird way) like I was giving in to the condition. It finally dawned on me that my story might actually help some of you guys - so here I am.

My journey with V is fairly straight forward and began in Sept '11 no real obvious trigger, typical nerve pains, run around from GP for 3 months until (I think I read somewhere on here) about Wendy Reid and coughed up the money to see her privately. I should mention here that I was in a fairly new r/ship at the time and sex wasn't an issue at all. I could and still can have completely pain free sex. She diagnosed me with unprovoked vulvodynia and put me straight onto Lyrica which was great. Worked pretty quickly to dull the pain. I was on it for 4 months when I decided to come off it and I was left only with some minor pain on one side which was mostly radiating through my thigh. Wendy sent me off for PT for this. Whilst waiting for the PT and weaning off the Lyrica (by this point I was mostly pain free but not 100% although the pain wasn't bothering me too much) I decided to see a McTimoney chiropractor in Worthing (she's also been mentioned on here) for the McTimoney pilot study. She was brilliant. Within month or so of seeing her I was 100% pain free. It's hard for me to say if it was the chiro or the lyrica but I'm fairly certain it was the combination of both these things - at the right time - that lead to this remission. I don't think one would have worked without the other. In total I was "in treatment" for 6 months.

I went 10 months 100% pain free and medication free with no sign of it returning. In April '13 it came back in a mild form (mostly the one sided thigh pain) and I booked 3 sessions with the chiro and it was gone again. This episode lasted only about 3 weeks.

In Sept '13 it came back again but this time the chiro sessions haven't quite been as helpful as they were in April. There are certainly symptoms that she can resolve - the one sided ones for sure. This time I'm experiencing an all over prickling sensation - more or less constant - over my pubic hair area that is stubborn and doesn't want to go! After 3 months of trying to get rid of it without medication I went back to Wendy Reid and this time I'm trying amitriptyline instead of the Lyrica. I know most of you probably think I'm mad as Lyrica is hailed as the wonder drug for vulval pain but I was on it for 4 months and gained 10kgs in the first two. It was petty hellish! I really wanted to try something different this time as the V was one thing, but the weight gain was equally as taxing on my mental health and wellbeing. I know a few of you mentioned you wanted to try Lyrica but just be careful. I know not everyone experiences the same side effects from meds but I really wish someone had told me about the weight gain before I went on it. Wendy said to me that whilst they work quite differently on the nerves, the end result is usually the same (it's just that ami takes longer to work).

So far the ami has been ok. I've only been on it 5 weeks and am up to 50mgs at night. I'm not 100% but I think it's starting to kick in. Its hard to tell tho as I'm so up and down I'll have a few good days and then a bad one but I think overall it is getting better. From memory - this is what happened last time. So far not too many rough side effects. If ami turns out to be useless then I'll bite the bullet and go back on the Lyrica but for now I'd rather wait and see.

Basically, I want you girls to know you can and will find a way to treat this. I've done it once and I'll do it again. It's just a matter of finding the exact right combination of treatments. There are things that I have suspicions trigger this but I can't be 100% sure. Just like its probably going to be a combination of treatments there's probably a combination of causes too that make something like this too hard for our bodies to bounce back from. Autoimmune or whatever else. It's so easy to get caught up reading negative stories on the internet but I see mine as one of the good ones. Obviously the fact that it's come back isn't IDEAL but the fact that I've resolved it once is proof that it can be treated and you can be pain free (and that finding a good team of dr's, gynae's, physios, naturopaths, osteopaths, chiros etc is the key to getting there).

London girls - I live in London too and would love to meet up sometime before the October meet.

Sorry this was ridiculously long but I wanted to try and include everything in case there were bits that might help some of you.

Any questions on the specialists I've seen/mentioned don't hesitate to ask.

Xx G

Georgia H

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Re: My journey - believe it or not it's a fairly positive one!

Post  mary jane on Tue Jan 28, 2014 10:29 am

Georgia, you are more than welcome to come to our support group meeting! the next one is on the 22 of March at St Cyprian's church

https://sites.google.com/site/londonvpsg/meetings

the girls are lovely and after the meeting we usually head for tea/lunch in the marylebone area.
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Re: My journey - believe it or not it's a fairly positive one!

Post  fightforacure777 on Tue Jan 28, 2014 4:04 pm

Thank you for sharing your story, and reminding us that their is hope and a light at the end of this tunnel.
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Re: My journey - believe it or not it's a fairly positive one!

Post  tinkerbelle2 on Tue Jan 28, 2014 8:37 pm

Hi Georgia,

Thanks for coming on and sharing your story! I took a while to actually sign up too because it felt like effort to write about my story from the very beginning , but now I can't shut up ! lol. And it also felt like I was admitting there was a real problem, with a real name, whereas before i'd almost been in denial and just getting on with life. But it has got to the point now where I can't push it to the background anymore. The pain is very much there, and if anything it's more nagging than ever before. I am feeling pretty confident that it's going to go away, with the right help and understanding. I'm in a way, excited.

Currently on amitryptline only 20mg atm (one in morning and one at night - no change as yet but it's only been 2 weeks). That's interesting about the lyrica! I hope ami doesn't make me gain too much as i've already been comfort eating A LOT!!

T x
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Re: My journey - believe it or not it's a fairly positive one!

Post  Delilah1 on Fri Apr 11, 2014 10:01 pm

Hello Georgia! Thanks for sharing your story! How are you feeling now?

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Re: My journey - believe it or not it's a fairly positive one!

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