Vulvodynia Support
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» Hope to all my suffering ladies
New and lost EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New and lost EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New and lost EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New and lost EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New and lost EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New and lost EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New and lost EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New and lost EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
New and lost EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

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New and lost

+2
x_chelss@live.com
Redhead23
6 posters

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Post  Redhead23 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

Posts : 6
Join date : 2015-04-17

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Post  x_chelss@live.com 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

Posts : 50
Join date : 2014-02-12

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Post  MensRea 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

Posts : 30
Join date : 2015-04-20

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Post  sarisbaris 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

Posts : 69
Join date : 2014-02-17

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Post  Redhead23 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

Posts : 6
Join date : 2015-04-17

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Post  Barbie2 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

Posts : 3
Join date : 2015-04-08

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Post  Nat0511 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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Join date : 2015-05-06

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