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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
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

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 …

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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 …

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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 …

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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 …

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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 …

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update - will I ever get to see a dr? grrrrrrrrrr

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update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Sun Jul 04, 2010 7:22 pm


Hi Girls

I've decided the quickest option for me would to train for a medical degree, get my dr'licence, prescription pad and start treating myself! Mad

Well I was suppossed to be refered to a vulval clinic and my gynea said he was gonna have a look around to see if another hospital could treat me. He said I would get seen within 6 weeks, its been over 2 months now.

Mum spoke to his secretary and apparently he has just referred me to another gynea in the same hospital. I am not really happy with this but i will go all the same

In the meantime mum (God love her) got me the number of a PAL's nhs worker for barking and dagenham who looked up my condition. She emailed a couple of consultant secretarys for st Barts hosp and she has given me the name of a consultant who treats Vulval problems

Well I now have to go to gp to insist I get a referal. So im going to see the gynea at Queens the Vulval lady at whitechappel (where the clap clinic is! ha ha) and the pain clinic in King Georges....surely someone will be able to help me!!! ugh!!

Sebby
xxx
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sarah001 on Mon Jul 05, 2010 12:52 pm

Hi Sebby,
"Clap clinics" are so much more than just places to get checked for STIs these days, it was a GU consultant who referred me to a vulvar dermatologist (happening in August) and if I'd gone to my GP I would have ended up at normal dermatology so it might be worth paying one a visit, a consultant can refer you to a particular consultant rather than just to a department in general where you may get to see someone who knows nothing about your particular condition. GU clinics know lots about vulvar problems and vulvar clinics etc and also can give you medication on the spot to treat the pain and advice about other angles. I came away with the offer of Amitriptyline, a leaflet all about vulvodynia and having been told about the pelvic floor retraining angle after my first visit to a GU clinic. It's worth a try if you don't get to see someone you need to see.

If I get nowhere with the dermatology angle the GU consultant has said she will refer me to a vulvar clinic. It's an out of date misconception that they only deal with STIs, even my GP is badly informed on that one and asked if I was worried about STIs when I mentioned I'd been to a GU clinic but as I pointed out to her I went because it's their specialist area of the body I'm having problems with.
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Mon Jul 05, 2010 8:07 pm


Thanks Sarah, I really didnt know GUM clinic's could deal with this stuff. Its good to know that they can give me something for the pain as I had a really bad day with the pain and only had co-codermol to take which does nothing.

I saw my GP today and she is going to refer me to the consultant that the PCT women recommened.

I still came out crying and angry. Apparently the Practise Manager had told my GP that I had made a complaint to the PCT and said that the GP's were unhelpul and basically rubbish!

I had said no such thing and neither had my mum! I have emailed the PCT lady to tell her what the Practise Manager had said to see what she says.

I had a copy of the email the PCT lady had sent me and in no point did it say I had made a complaint and slagged off the GP's

Im so angry as it made my visit to my dr, (which is difficult enuff when u have to keep going back)very stressful

Grrrrrrrrr
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sarah001 on Tue Jul 06, 2010 11:59 am

That's kind of what they did to my partner when my partner dared to point out the system of appointments at our practice wasn't working, then they turned it around and accused him of being rude to a Receptionist which he wasn't because I heard the entire phone call. Don't forget you can complain about the Practice Manager and the lies that have been told. Don't let them walk all over you.

As for the GU clinic, if you wanted to go down that route it's best to phone and ask which consultant would be the best one to see and make an appointment. The great thing about GU clinics is we have access to consultants without a referral which obviously saves alot of time and hassle at the GPs and the GU clinic can refer you to a vulvar dermatologist, a vulvar clinic, a womens health physio etc

Try not to let the pettiness of the Practice Manager get you down and don't let her get away with it, these people shouldn't be allowed to lie and abuse their positions to make people who need help afraid to come and ask for it.
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  jules on Thu Jul 08, 2010 3:59 am

you two are fun to listen to. what is a GA? why do you have to wait so long to get into places? of course, i did have to wait at least two months to get in with a gynecologist who specializes in treating Vulvodynia...she was worthless. if we complain here (America)...the clinics bend over backward to meet our needs. the customer is always right in the U.S. I am going to complain to my male practitioner at the pain clinic because the physical therapy center never received a referral from the clinic staff. hello, it's been at least a month. it is a learning lesson. we go through enough w/ the pain, disappointments, frustrations etc. i think i cry more often because of these damn doctors than i do about the pain...ok..i guess i cry about the pain too. i was so bad yesterday that on top of my prescribed Vicodin..i took an OXYcodone that a relative gave me. (don't tell my doc) the heat that was generating from my vulva probably could have set the couch on fire. i'm surprised it didn't. much better today...but..damnit, it is still there. as Sebby says.. This is "fecking" ridiculous. she also says i "fink" so...very clever ms. sebby. ok..ladies after another night of drinking my sorrows in a few glasses of Baileys Irish Cream, i am heading to bed. you ladies are already sound asleep. take care...good luck to you! oh and about sexually transmitted diseases, we call them STD's. not STI's (?) is that illnesses.

j

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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sarah001 on Thu Jul 08, 2010 12:52 pm

Hi Julie, it must sound like gobbledy gook to you!! A GP is a General Practitioner, they are our general doctors and in order to get to see consultants you have to persuade one to refer you which they can be pretty reluctant to do because each referral costs their practice money so if they can avoid sending you to see someone else they will. I find getting an appointment with my GP can be difficult as she is fully booked right from 5 minutes after opening for the day and to pre-book an appointment means you have to wait about a month.

It's only in recent years we've changed from calling STDs to STIs and it stands for Sexually Transmitted Infections, I don't know why they've changed it they just have!

As for everything taking so long, it's like Sebby said a couple of appointments with consultants on the NHS can take a year to get through so trying things out can take forever here in the UK. My referral for a Vulvar Dermatologist was requested about 3 and a half months before the actual appointment because you have to wait your turn, there aren't many instances where you get fast tracked for being urgent. Then there's the months of trying to persuade a GP to refer you in the first place so although it's free it's also very, very slow. Not many people in the UK can afford private medical care as they make it so expensive but if we had private cover we could get in to see people in a couple of weeks rather than waiting months. Unfortunately private cover sends us to the same doctors who work on the NHS too which of course means the more private patients these doctors squeeze in quickly the slower the NHS gets.

As for complaining, unless they've killed someone close to you complaining about the mighty NHS usually doesn't help. One of my friend's Dad had to have an op to remove an abcess and the surgeon cut away a huge chunk of skin and declared there was no abcess there. When a nurse checked it she realised the surgeon had cut flesh from the wrong side of the body which is why he found nothing and the abcess was still there untouched. She took photos of this for the guy but then said she daren't back him up in court or she'd lose her job. When he approached a solicitor (lawyer) about it he was told unless the NHS kill you it won't do any good to complain so he just had to go back on the waiting list for several months to get the original surgery repeated on the right area. However I personally have complained about an NHS dental practice and surprisingly they took it seriously and immediately registered me with another so it works to complain about Dentists! I think if you stay calm and complain high enough up the ladder it sometimes works.

The healthcare in the UK is in a bit of a mess these days because there aren't enough appointments to go round, nurses are frequently made redundant even though the hospitals don't have enough staff and patients are having to travel further and further away for certain conditions because of this and other political reasons. The NHS sounds fantastic on paper but as a working model it doesn't work too well!
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Thu Jul 08, 2010 9:45 pm


Feck it! I fink im gonna move to the US! lol!
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  naomi on Fri Jul 09, 2010 5:16 pm

book me a flight too whilst ur at it pleaassssssssssssssseee Sad
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Fri Jul 09, 2010 8:46 pm


Sod it! why not....our NHS is so crappy and we can pay for the treatment by becoming some kind of Vegas act...not sure what we will do but we got time to fink about that lol

xxxxx
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Sat Jul 10, 2010 9:04 pm


Dr's are still thick!

Asked for the referral to St Barts, get call from GP saying that my Gynea has already reffered me...I say his secretary told me he had only refered me to another dr in Queens..GP said no wait for letter for St Barts vulval clinic

I got a letter...for King Georges...WTF!!!!

Gotta phone round again to actually find out where im being refered too and to ask again for st Barts

grrrrrrrrr

Again i should just go to medical school myself Mad
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