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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

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

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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


Hello!

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Hello!

Post  Hoping23 on Thu Aug 26, 2010 7:32 pm

Hello everyone,

My name is Hannah and I was diagnosed with Vulvodynia a couple of months ago after 2 1/2 years of doctors/hospital appointments including swab tests, ultrasounds and a laparoscopy! Nothing was found and eventually thank god I got sent to the dermatology clinic and have finally (after i made my own diagnosis ages ago) been confirmed with Vulvodynia.

It's feels like such a relief to have an official diagnosis and i've been started on Amitryptiline the antidepressant which suppresses nerve messages (or something like that) unfortunately my repeat prescription is for such a small amount and im now upto 50mg a night (5 tabs) i've not been able to get to the docs for over a week to get more - so annoying as my 3 month hospital check is mid September - I noticed a small improvement on 4 tabs but it still hurt during sex.

Generally i would say i have got off lightly with the condition, i only have the pain on initial entry (and the first few thrusts) of sex and if i don't think about it we can get away with it after that. I have none of the pain that ladies suffer with constantly and have managed to avoid vaginismus (sp?) by making myself relax although i might have a touch of it too.

It still sucks, i'm newly married, 23 and this condition occurred out of the blue! Luckily me and my husband had been together for 4 years when it first started, tho i can't remember when that was exactly, so i've been able to test treatment methods such as lidocaine cream etc. i can't imagine what it must be like for someone not in a relationship already who wants to be in a sexually active relationship, it makes me feel sad to think about it.

Anyway, this turned into a bit of a long one, thanks for reading,

H x


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Re: Hello!

Post  Sarah001 on Thu Aug 26, 2010 7:38 pm

Hi Hannah, welcome aboard! You're right you have got a nice mild case, well not nice but mild anyway! I'm on the Ami too but I have constant pain and inflammation and sex is out of the question even with the Ami. Have you had your pelvic floor professionally assessed in those 2 and a half years?
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Re: Hello!

Post  Hoping23 on Thu Aug 26, 2010 8:04 pm

No - what does that involve and who should I ask to do it?

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Re: Hello!

Post  Sarah001 on Fri Aug 27, 2010 10:10 am

You need to see a women's health physio that uses a biofeedback machine and they get you to insert a vaginal probe then hook you up to the machine so they can see what's going on. The important part is the resting tone, the pelvic floor should be nice and relaxed when you're not doing anything and the reading should be about 2 on the machine. Mine was a whopping 20 so my pelvic floor isn't relaxed at all and the kegels I was doing to try and help myself were making things worse. You can find a WH physio by searching online for your area but do call them first and ask if they have a biofeedback machine.
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Re: Hello!

Post  Sebby (Admin) on Fri Aug 27, 2010 3:29 pm


Hello and welcome Hoping.

Hope you find the boards usefull..these girls have fantastic advice to give!

I find my vulvodynia is sometimes mild and sometimes bad..so it depends really

I hope and pray that yours gets betta

Godbless

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Re: Hello!

Post  jules on Sat Aug 28, 2010 11:43 pm

welcome! you will learn a lot from us. we are all quite knowledgeable. Ha ha! we are a nice network of women who are there for each other, which i thoroughly enjoy. it is nice to have a diagnosis finally after running from clinic to clinic. although, when i received the diagnosis, i was devastated thinking i would have horrible pain forever. i have learned that there is much that can be done to help reduce the pain. sounds like you have vestibules vulvodynia. i have generalized Vulvodynia (pain all over the vulva-red burning hot pain, at that). so sorry you have to deal w/ this at such a young age. for some people, it just disappears one day (I have read). what country do you live in? I'm from the United States...Minnesota. I have never heard of a woman's physio. Sarah001, is that like a physical therapist?

as a very last resort, in your situation, they can do surgery to remove the skin in that one area (entrance of vagina). i had a consult at the Mayo Hospital in Rochester, Minnesota (world renowned). they didn't recommend surgery because my pain was all over..however, i would have considered it if i had what you do. the rate of success is very high.

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Re: Hello!

Post  Sarah001 on Sun Aug 29, 2010 6:47 pm

Yep a physiotherapist here in the UK is what you call a Physical Therapist. Wink
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Re: Hello!

Post  Hoping23 on Mon Aug 30, 2010 5:22 pm

Well i've got my next hospital appt 21st September so I'll speak to them then about the biofeedback thing, I also read in one of the threads on here about a pelvic floor educator so i might have a look into them! I've taken some notes off here to ask about - and finally got my prescription of 50mg tablets so one packet of Ami should now last a month, at least it's better than taking 5 a night!

I have had an ok experience with the Lidocaine cream too (other than the initial mega itchiness!) however last time we used it I completely numbed my husband lol!

I've read about the surgery and it is something I think I'd be willing to try as I also have heard there is a high success rate - it's just a bit of a scary thought slicing and stretching my skin down there - i think if i was to go for surgery it would probably take another couple of years to get through the hospital system anyway!!! I wish I was private really then at least i might get a quicker response but I do think I've got a good doctor now who seems to know plenty about the condition!

H x

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Re: Hello!

Post  Sarah001 on Mon Aug 30, 2010 6:20 pm

God I know that feeling, I really could do with a windfall so I could do all these things privately! I'm assuming you're UK based so you're right, it would be several years before the NHS would even consider surgery as an option.

The pelvic floor educator is really good, just make sure you get assessed first so you don't do what I did and do the wrong amount etc with it. Don't be surprised if a doctor doesn't know anything about biofeedback, a GU consultant I saw knew it was a recommended treatment for vulvar issues but a vulvar specialist didn't! The only person who can give you sound advice about it is a women's health physio and only after testing you on a biofeedback machine to see what's going on.

Keep trying things and good luck on the 21st.
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Re: Hello!

Post  jules on Mon Aug 30, 2010 11:25 pm

Interestingly enough, i had an appt. set up for surgery right after i got the diagnosis.. the difference between the USA health care system and UK.

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Re: Hello!

Post  Sebby (Admin) on Tue Aug 31, 2010 6:48 pm


Yes the uk system sucks!

I have just compiled a list of womens physios in London/Essex and will do some ring rounds to see if they have treated Vulvodynia before and to check costs.

Most seem to be in Kensington....the post area of London! Not suprised really I will ring local ones first

Thing is im awaiting nerve block etc and im not sure about pursuing several treatments at once as how will I know which one works? And of course both mite work at same time..its a little confusing Neutral
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Re: Hello!

Post  Sarah001 on Tue Aug 31, 2010 7:25 pm

If I was you Sebby I'd do the pelvic floor retraining first as a tight pelvic floor can irritate the nerves so releasing it might make the nerve block unnecessary and a pudendal nerve block is quite invasive if the online info is correct. Besides as long as you got better it wouldn't matter what had worked, if it was the nerve block you'd know after a period of time because they don't last forever. Get phoning and get your pelvic floor checked out!
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Re: Hello!

Post  Sebby (Admin) on Tue Aug 31, 2010 9:00 pm


Yes I think I will! might as well.

I will still get nerve block as otherwise I could be wating many more months for appointment back to pain clinic

I guess after a while of pelvic floor training I can see if im ok without the nerve block.

Cant hurt to train the pelvic floor anyway
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Re: Hello!

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