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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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: 4

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: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


New and lost

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New and lost

Post  Redhead23 on Fri Apr 17, 2015 7:15 pm

Hey ladies.

I'm at a stage in my life where my vulva pain has completely taken over. I'm depressed and even suicidal and after crying a ton today, decided to look for support.

I'm from the UK, I'm 31 and I've suffered with pain, burning and stinging of the vulva, clitoris and vestibule for 12years after a yeast infection and a bladder infection.

I've struggled over the last decade trying to get doctors to believe me. One told me there's nothing they can do, one basically told me to go away and live with it. I've been given lidocane and amitryptiline in the past but neither changed anything.

My symptoms are worse just before and during my period, at the same time I have what I call a bladder flare up. I feel a heavy feeling like my bladder is falling out, it hurts to pee and I feel the constant fullness of needing to go to the toilet. Along with the pain, stinging and 19 day periods I experience my life is hell at the moment.

I honestly don't know which way to turn at this point. I saw a gynecologist who was only interested in looking into my periods. His answer was the implant, but like contraceptive pills in the past they only made my stinging worse, which he didn't believe, anyway the implant is now out but the pain hasn't reduced. I've been left unable to function. I can't sit down and I spend my days crying because I honestly don't know where to go next.

I have a joint condition which includes weak muscle stability and twisted up joints, this includes a bad back and often wondered if its all connected.

My partner found this site for me and suggested I join. So here I am. Hoping the girls here have some advice for me.

So hello to everyone here. R xx

Redhead23

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Re: New and lost

Post  x_chelss@live.com on Sat Apr 18, 2015 4:49 pm

Hi. I'm 19 and from Birmingham. I was like you two nearly three years ago I seen countless amount of doctors and none could diagnose me! I went to different hospitals and I ended up at Solihull hospital I seen a lady called doctor Hutchon. She is the woman who made my life better by diagnosing me but worse knowin there was no straight forward cure, after a year of pointless tablets not working I decided to go private at the BMI Priory, in Edgbaston (I don't know where your from) and I seen a man called Professor Luesley, he is a specialist in gynocology and noes a lot about vulvodynia. If your not to far from Birmingham/Edgbaston I would recommend you see him, his appointments range from £150-£200 but you will not be disappointed he made my life better after one appointment. He offered me surgery, and I had that on 28/01/15 I haven't looked back since!

Good luck x

x_chelss@live.com

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Re: New and lost

Post  MensRea on Mon Apr 20, 2015 1:23 am

Hey Cheiss. I am new here! I have read all your topics regarding your vestibulectomy and i would like to ask how much did you pay for the surgery.
Thanks in advance Smile

MensRea

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RE: New and lost

Post  sarisbaris on Tue Apr 21, 2015 1:41 am

Please please read my post titled "Cured from vulvodynia - I've been pain free for over a year... please read" I really was cured a year ago... while I was super pregnant as well.  Please consider this option before surgery.  Unfortunately the vagina baffles western medicine. I saw so many western doctors who couldn't help. I realized over time that they really wanted to help but didn't have the knowledge, the understanding nor the cure. Some doctors would dismiss me, other would deny my pain, others would be angry and the best ones would be truthful and confess they couldn't help. This is the worst thing about vulvodynia.

This is first paragraph:
I had vulvodynia on and off for 15 years. (I have probably seen 15+ western doctors plus specialists in San Francisco). I tried acupuncture and TCM herbalists which helped but wasn't a cure. I got pregnant and it was horrible. I found a practitioner of Acupoint Nutritional (or Integrative) Testing who finally pinpointed the cause of my pain and alleviated my pain in a few months. It was a slow progress (a few months) but it was a permanent fix. Basically she just gave me a bunch of pills that were all herbal and natural. I was pregnant at the time. I'm so grateful. (This won't allow me to add a link but just google Acupoint Nutritional (or Integrative) Testing.  They have bad online presence, so if that doesn't work google Dawn Dolan in Cotati, CA. She can find someone in your area. Basically, she uses applied kinesiology to figure out the cause of my the problem and the remedy. Sounds crazy but it worked! Now I've been pain free for over a year!  She said that if you are not in the northern California area she can help you find a practitioner who can help. This is legit.  I'm sorry I didn't post sooner, I've been busy with my baby. If you're reading this and you're in pain my heart goes out to you. That pain was freakin unbelievable. Please give this a shot. Let me know if you have any questions.

(see my post for the rest)

Note: I just looked online and unfortunately they have the worst web presence. Sigh. I'll see what I can find out from my doc and see if there is a directory or any in the UK.

sarisbaris

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Re: New and lost

Post  Redhead23 on Tue Apr 21, 2015 11:18 am

Thank you ladies. Im gonna get around to reading as many posts as I can and see if theres anything I can try. I see my doctor on Friday so I wanna go armed with some info for her. Sadly today I'm very ill with my other condition and haven't had the strength to do much but sleep. I'll definitely look into your suggestions. Im in the north east of England by the way x

Redhead23

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Similar symptoms

Post  Barbie2 on Fri May 01, 2015 1:13 pm

Hi I am from Manchester, have struggled for 5 yrs clitoral, vulval, burning, pins and needles, heavy bladders feeling in morning, has settled mainly to left, I am on max dose lyrica tried pt in London, nothing picked up, any questions feel free to ask.

Barbie2

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Re: New and Lost

Post  Nat0511 on Wed May 06, 2015 10:05 am

Hello there,

I am so sorry to hear that it is all getting too much, although I completely understand. It is beyond words how awful it is to live with debilitating and socially awkward conditions that are under researched and badly diagnosed. You have my complete sympathy.

I wanted to offer some help though - I have vulvodynia and i used to have chronic cystitis and thrush too - I was on a constant cycle of cystitis, antibiotics, thrush, and I was so, so miserable. In desperation one day I searched for cystitis self help books and I found one on Amazon by Angela Kilmartin called 'Urinary Infection - Sexual Cysitits'. She offers help for both sexual and interstitial cystitis. But basically it was a massive revelation and I am completely baffled as to why her advice isn't the first thing mentioned by any GP worth their salt, instead of ruining your immune system with antibiotics, poking and prodding you. Basically, Angela's advice is that non interstitial cystitis is a direct result of faecal matter travelling from your anus to your urethra and the only way to stop the infection is to stop this happening. She teaches a way to wash after defecation and before intercourse using a water bottle and soap. I did this for a while, although it is a bit of a nuisance, and I literally never got cystitis again. After some time, I thought I might try the unscented moist toilet tissues that you can buy as carrying around water bottles, soap and flannels all the time was a bit of a pain. And it worked!! I keep a pack of moist tissues is my handbag and one by the toilet at home. I use them after every stool, before bed, before sex, and after sex (just on my anus), and they seriously work. I had cystitis every other week from when I became sexually active aged 20 until I read Angela's book last year, aged 29. I'm now 30 and been free of cystitis for 1 year. And being free of cystitis has also freed me from thrush as my immune system and PH balance is better. The vulvodyina is another matter but feeling in control of my cystitis has helped me feel better about myself and more able to cope.

I hope this is of use to you and I send you lots of encouragement and understanding about what you're going through.

Nathalie

Nat0511

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Re: New and lost

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