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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 …

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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, …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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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