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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 …

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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 …

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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

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: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


Five weeks of stability

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Five weeks of stability

Post  PainBlogger on Mon Feb 22, 2016 9:56 am

I hope I'm not tempting fate by writing this(!), but I've been looking at my pain diary and it's now five weeks since my pain has gone over a daily average of 2/10. What's more significant is that I've been doing stretching exercises on my PFMs during that time with the smallest dilator and although progress is very slow I am noticing that the muscles are gradually becoming less tight and more flexible. I know that I could have a setback any day, but having this period of some stability has boosted my confidence so that if/when I have a flare, I can believe more easily that it will be temporary and I can hopefully have increasingly longer periods between flares.

Anyway, I just thought I'd share that in the hope it will encourage anyone who is feeling pessimistic at the moment. Smile

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Re: Five weeks of stability

Post  WaahwaahUK on Wed Feb 24, 2016 3:39 pm

This is fantastic! Really pleased to hear your progress. Where did you get the dilators from, were they prescribed to you? I've just bought the Amy Stein book and it makes an interesting read with regards pelvic pain / vulval pain etc. Wishing you tons more good days!

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Re: Five weeks of stability

Post  PainBlogger on Wed Feb 24, 2016 5:25 pm

The dilators were recommended by both the physio and consultant. I got them on Amazon (Amielle comfort brand). Considering they are just bits of plastic they are somewhat expensive, but needs must Rolling Eyes .

I have the Amy Stein book too. I should probably re-read it now that I'm making more progress and see if there's anything I can add to what I'm already doing.

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Re: Five weeks of stability

Post  WaahwaahUK on Wed Feb 24, 2016 6:48 pm

Did you get the physio through your GP? Is it a womens health physio? Sorry for all the questions! I just feel like I've been left in the lurch a bit and it's so useful to hear other UK progress.

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Re: Five weeks of stability

Post  PainBlogger on Wed Feb 24, 2016 9:09 pm

I sorted the physio out myself privately. I don't think the GP even knew physio was an option for this! But, in any case, from what I've heard, it's nigh on impossible to see an NHS women's health physio in this area, though maybe in big cities like London it's easier to find one. Although no doubt on the NHS there's a limit to a few sessions. There's no women's health physio in the town I live in so I have to travel a bit as it is.

Yes, she's a women's health physio. She also still treats more general problems, but she's done the post-graduate training for women's and men's health i.e. bladder/bowel/pelvic symptoms. I think they have to have done that before they can do any internal assessments and treatment.

And no worries about the questions. If I can help then I'm happy to. Smile

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Re: Five weeks of stability

Post  WaahwaahUK on Sat Feb 27, 2016 2:07 pm

Thank you. I found out this week there is a women's health physio place in my town, and my GP can refer. So now I just need to be able to get a GP appointment again which is virtually impossible! In the meantime I may ask my osteopath his opinion on it. I'm all for the nhs but things take so long sometimes.... I am fairly certain I have pelvic issues in all this so I would really appreciate an expert having a look. Gynaecologists have been really unhelpful.

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Re: Five weeks of stability

Post  PainBlogger on Sat Feb 27, 2016 9:14 pm

I hope you find a physio assessment helpful. I too am all for the NHS - I think we're very lucky in this country to have such a service and to know that if something life-threatening occurs there's no need to worry about paying for treatment. But there's not enough funding or resources when it comes to a lot of non-life-threatening chronic conditions Sad


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Re: Five weeks of stability

Post  PainBlogger on Sun Mar 27, 2016 9:00 pm

In the hopes that it might encourage others, I just wanted to post and report that my five weeks of stability is now nine or ten weeks. I haven't had a real flare up since mid-January. My average daily pain has not gone over 2/10 in that time and more often than not has been more like 1/10 - very low level or even absent. Emptying my bladder is still the time when I'm most likely to get a spike in pain, but it hasn't persisted for long.
In addition, I'm seeing an improvement with my tight pelvic floor muscles and I've been able to progress to stretching with the third dilator in the set of five without provoking pain. It is quite time consuming to devote half an hour a day to those exercises, but I feel like I can see the light at the end of the tunnel.


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Re: Five weeks of stability

Post  WaahwaahUK on Tue Mar 29, 2016 4:34 pm

I'm so so pleased for you! Please keep posting your progress!

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Re: Five weeks of stability

Post  PainBlogger on Wed Mar 30, 2016 10:03 am

How's it going with you, WaahWaah?

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