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Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

» Newbie and feeling helpless
Thu Jul 12, 2018 6:35 pm by emalita

» Using dilators
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» Hello. In Need of Advice, Please and Thank You. Long Read.
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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: 1

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: 9

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: 1

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: 5

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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0


Finally found what I think is wrong with me!

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Finally found what I think is wrong with me!

Post  Emily20 on Sun Dec 26, 2010 11:31 pm

I've been suffering for the past 4yrs or so with what I thought to be Cystitis, however, I've always known that it wasn't quite the right symptoms for cystitis. Anyway, with another bout of what I thought to be cystitis today, I got quite sick of it and decided to research further and found Vulvodynia - symptoms match almost perfectly and I feel pretty relieved. However, I've yet to find a doctor in my area good enough to diagnose me with it, if this is what it is. My current Doctor keeps diagnosing me with cystitis, however the pain had always been external, and has made me unable to work, sleep or go about my daily life as normal. It only comes on in bouts of pain and I don't always have it. However, when I do, I need to sit on the toilet for hours on end until the pain has gone as this seems the only way to relieve it. I also find drinking lots of water helps which sounds like a water infection but all the symptoms of Vulvodynia match up too.....this is now the only thing I'm doubting. I also get dull aching/burning pains in the vulvic region when I sit for too long which I've always thought strange until now. After sexual intercourse I get what feels like a friction burn - another symptom explained! I was also wondering where everyone is from? I'm from the UK and it seems most cases are in the USA, and unfortunately all the treatment seems also to be in America. Just wondering if anyone knows of anywhere in the UK and if anyones had the similar symptoms of prolonged time on the toilet and drinking lots of water to relieve pain? Any help would be fantastic!
Thanks. :-)
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Re: Finally found what I think is wrong with me!

Post  Sebby (Admin) on Tue Dec 28, 2010 11:38 pm


Hi Emily and welcome to the forum

Im from the UK..and so are many of the members on here. We also have members from the USA and other countries..

When I was first having the symptoms on a regular basis I thought it was thrush and so did the GP. I got a little suspicious after my tests came back negative of course! Its so common for drs to either think its a yeast or unrine infection.

Im guessing the main reason so much time on the toilet helps is that you having nothing putting pressure on your vulva area and so find the pain calms down. I too find sitting painful so tend to sit with my legs up on the sofa or lie down. The pressure on the vulva area does make the syptoms worse. I get stinging, burning and rawness. Its like if any part of your body was sore pressing it makes it feel worse!

A good tip one of our members has given is to get yourself a doughnut cushion..it has a hole in the middle so you can sit on it and have no pressure on your vulva area..much like a toilet seat!

I can also relate to the friction burn type pain after sex..I have always had this after sex so its been an issue as long as I have been sexually active. I am not in a relationship at present but in terms of sex I have found that being intially on top helps as you have more control of thrusts and also lots of lube!! Also on the painful days try other forms of sexual pleasure and don't worry to much if you cant always have intercourse..Ive never been the type of girl who could 'go at it' every day lol so have had to be quite creative!

I havnt tried the drinking water thing..I mite just do that although I can see that I will be then spending a lot of time on the loo! There is one theory that there is a certain substance called oxalates which are thought to irritate vulva tissues as its found in urine and that by drinking lots of water helps to decrease the absorbtion of these oxalates so they will of course irritate the tissue less. There is also a special diet that you can follow to reduce oxalates in the body..unfortunatly oxalates are found in chocolate and tea!! Anyway I did read in the 'Vulvodynia Survival Guide' that by drinking lots of water you can reduce the Oxalate crystals in your urine by up to 80% anyway by drinking lots of water whereas following only the diet will not reduce it half as much..

As for treatment in the Uk I suggest asking your dr to refer you to both a Vulva Clinic..yes we have clinics just for vulvas! who knew! and also a pain clinc. They can then both look at various treatments from medications to nerve blocks etc whatever works for you. I also suggest as many of the members have suggested to me to get physical therapy. I am getting refered for this in the new year and have received two recommendations from emailing this website

http://www.acpwh.org.uk/content/

I hope some of this info can get you started..dont give up if one treatment does not work keeping going thats what im doing

Godbless and Take Care

Sebby
xxx

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