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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 …

Comments: 3

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

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


Bad day, bad week...

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Bad day, bad week...

Post  WaahwaahUK on Fri Jul 29, 2016 5:40 pm

I feel like I'm hitting a place now of real uncertainty. My osteopath now thinks I've probably had the right treatment for my pelvis and back problems and that the vulva and labia pain I still have could be residual, neurological pain. Makes sense as my back apart from a few blips in recent months is improving. My vulvodynia pain has improved greatly in the last say 12 months (before then I could barely walk with it and it felt like something was slicing my skin). So now I'm at a point where I've started women's health physio and am now doing some internal sweeping. This is sooooooo hard! I feel like it flares my pain, so I'm going gently, and persevering. I've ordered some dilators which I will start using too soon. I don't understand how the dilators may help with the vulva pain? Do they ultimately help? I'm having a day where I feel anxious about the future with this. Am I as healed as I ever will be? I hope not. It's so hard when I can see my progress, and yet on days like today I worry that this is it. I was never conscious of my vulva until all this happened to this degree! It feels so highly sensitive I wonder if it will ever go away! I really hope after a few weeks of internal work I can come back and tel you ladies something more positive. Tonight I just feel fragile, alone in this, and fed up with the pain - even though I've been in far worse pain than this previously with it. Positives - I can wear jeans again with only some discomfort most days. I can walk my dog most days with discomfort rather than slicing pain. I can consider going places a little more easily other than just to and from work. I know these are evidence of progress, just having a bad day...

WaahwaahUK

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Re: Bad day, bad week...

Post  emalita on Fri Jul 29, 2016 6:05 pm

I'm sorry to hear that you're discouraged, but just know you are not alone in your feelings. I know exactly where you're coming from, and even though there is progress, sometimes it seems too slow to be truly excited about it. I've also found that even though my pain, like yours, used to be so much worse, I am now so hypersensitive to every single feeling down there that it seems as if anything other than 100% fixed just isn't good enough.

I've also been there where the very treatments that are supposed to help us get better provide the greatest discomfort. I haven't started my dialator therapy yet, but I have read from other women on here that it can take a really long time to see lasting benefit. I think the main focus is to retrain the nerves that not all touch is bad touch...essentially trying to desensitize them, I guess.

I hope you're able to stick with your therapy and you continue to see lasting progress. I saw a quote once that said, "positivity is not a cure for chronic illness - reality and honesty about symptoms is not negativity." I believe this is very true; so just know it's okay to have bad days Smile

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Re: Bad day, bad week...

Post  PainBlogger on Fri Jul 29, 2016 6:50 pm

Sorry to hear that, WaahWaah. It can be such a long road to recovery and it's perfectly natural to get frustrated and feel discouraged.

Dilators - I think it's partly desensitization and partly relaxation of the PFMs that provide the benefits in terms of reducing vulval pain. I spent so long taking one step forward and one back with them but then about seven months ago now that became two steps forward and one back and then I was just proceeding forwards. They've definitely fixed my internal pain about 95%. As to my external vulval pain - that had started to improve before I started to make progress with the dilators. So I can't tell for sure how much the dilators contributed to the reduction in that. But everything is so close together down there that I figure that anything that help lengthen/relax muscles and hence reduces tension that may set off nerve pain has to be a good thing.

It's easy to say focus on the positives but, in my experience, it does help to look back to the beginning when having a bad day and remember how much progress one has made from the absolute worst times. And I know hearing that other people have got better from this can just invoke that feeling of 'what am I doing wrong?/'how have they managed to get better?'/'they're just luckier than me' and so on. But, the fact that other people have got better means it's quite possible that you can too Smile

There are some good books on mindfulness that you may find helpful. I was very sceptical about mindfulness but there are huge amounts of evidence that it is helpful for chronic pain patients and I'm sure being more mindful has helped me with the anxiety and depression associated with my chronic pain.

I hope you see some more progress very soon.

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Re: Bad day, bad week...

Post  PainBlogger on Fri Jul 29, 2016 6:54 pm

https://www.amazon.co.uk/Mindfulness-Health-practical-relieving-restoring/dp/074995924X/ref=sr_1_1?ie=UTF8&qid=1469818375&sr=8-1&keywords=mindfulness+for+health - this is an eight week programme. If you don't want to pay out a tenner, there's always the public library.

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Re: Bad day, bad week...

Post  WaahwaahUK on Fri Jul 29, 2016 8:22 pm

Thank you both, so much... I think I spend so much of my life reassuring other people about their feelings and worries and some days I just feel so, so drained from this. The psychological damage is so vast. I'm a trained counsellor myself and I totally recognise in myself the chronic anxiety that has come from this condition for me, and the daily fear. I really appreciate your positive words. I know in the early part of last year I could barely walk without my teeth permanently gritted. Those days are far, far fewer now. I will persevere as I know I'm really only in the early days of actual physio in that area and dilators etc. I so desperately want my life back. I'll definitely look into mindfulness more, thanks. Thank you for listening. I just had to have a human moment today. I'm so exhausted from putting on a front. Thanks ladies.


Last edited by WaahwaahUK on Fri Jul 29, 2016 8:23 pm; edited 1 time in total (Reason for editing : Spelling error)

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Re: Bad day, bad week...

Post  WaahwaahUK on Fri Jul 29, 2016 8:25 pm

Painblogger it does help to know that others have had times of one step forward two steps back. I feel like that's where I am now, but it encourages me to know others have experienced that early on in treatment x

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Re: Bad day, bad week...

Post  PainBlogger on Tue Aug 16, 2016 1:43 pm

How are you doing now, Waahwaah? Any better?

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Re: Bad day, bad week...

Post  WaahwaahUK on Tue Aug 16, 2016 3:35 pm

Hi PainBlogger. Bit better again thanks! I am slowly using the smallest dilator daily now for a few minutes with less discomfort. My back is more stable again now too. The vulvodynia pain seems to have settled back to bearable again too. I am unfortunately on antibiotics for a tooth infection so hoping desperately that doesn't upset things down below... I have my next physio on Thursday so plan to post an update then. Thank you so much for asking. Hope you are continuing to improve!

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Re: Bad day, bad week...

Post  PainBlogger on Tue Aug 16, 2016 4:33 pm

Good to hear, Waahwaah. Hope physio goes well on Thursday. I'm generally doing well, thanks. A few not-so-good days here and there, but nothing horrendous Smile

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Re: Bad day, bad week...

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