Vulvodynia Support
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» Hope to all my suffering ladies
Just want a solution for a good quality of life EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Just want a solution for a good quality of life EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Just want a solution for a good quality of life EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Just want a solution for a good quality of life EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Just want a solution for a good quality of life EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Just want a solution for a good quality of life EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Just want a solution for a good quality of life EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Just want a solution for a good quality of life 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!
Just want a solution for a good quality of life 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 …

Comments: 3


Just want a solution for a good quality of life

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Post  mariah2558 Thu Dec 08, 2016 9:49 am

Hi all,
My name is Mariah, I am 19 years old and I was diagnosed with vulvodynia in November of last year 2015. They finally diagnosed me after I've been dealing with this condition for over 12 years. I can remember as far back to being 5 years old complaining to my parents that my pee pee hurt and it just got worse and worse as I grew older. I wasn't in nearly the pain I am now though. I can remember my later childhood years always being uncomfortable when I was wear tight clothing always getting into a warm bath and having these sharpe, burning and uncomfortable pains down in my vagina. When I would go see my doctors they almost kind of blew it off. Said it was a yeast infection and as the problem progressed as I got older they told me it was just bacterial vagininosis. Just prescribed me with Dyflucan gave me topical ointments, some antibiotics when it was "bacterial vaginiosis" told me to use Monistat creams if it came back down the road and sent me on my way. Sometimes those things worked but only for a couple hours and then I was back in pain but after a day or so it would go away and my vaginal area would just be irritated but it always was so it was nothing new for me. Now then I'm entering into my adult years, I'm in my second year of nursing school, I have 2 jobs, and I work for the hospital here in town I can't bare living like this anymore. Some days I'm okay just my normal irritation but these past 3 months have been so extremely awful for me. I've probably been to the ER 20 times because the pain is so excruciating I can't handle it anymore and need something. At some points I've been in so much pain I didn't sleep for 28 hours because I was up pacing myself back and forth, in and out of the bath tub, bawling because the pain is just so awful. The worst part about everything, even worse than the pain, no one understands what you're going through. No one understands how much pain you're in and how badly it affects you and hurts. They thing you just need to tough it out or get a higher pain tolerance. My gynecologist that diagnosed me but me on the nerve blocking medication called amitriptyline we started at 25mg just once a day until my body got used to it and then stayed on 50mg for a month with little problems then every time I got a flare up she would just up my medication i got up to 200mg of amitriptyline before she switched me over to gabapentin 300mg 3x a day. Then she explained to me how she had only seen a couple patients with this diagnosis and wanted to me to get some relief. So she sent me to see a specialist in Omaha. I feel like this doctor doesn't listen to a thing I'm saying. Everytime I call saying I'm in pain her nurse tells me oh take deep breathes it'll go away use cold compressions or get in the bath. She acts like I hadn't already done that. Like I said been dealing with this problem for 12+ years when I start to get my awful flare ups I almost immediately jump in the bath tub. After weeks of hownding them I was in pain they finally did something beside medication. They gave me lidocaine/steroid injections. That ended up making me feel even worse. I currently go to physical therapy to work on not clinching my nerves so much and loosening up my pelvic floor muscles. My specialist has me on gabapentin 300mg 6x times a day and lidocaine 5% topical ointment to put inside my vagina and on the outside of the vulva and vulvlar opening. I have an appointment to see a urogynecologist and an appointment at the Mayo Clinic in Minnesota. I just need some advice on what to do? Did anything work better for anyone? I have heard about the Botox injections and the surgery did any of those significantly help anyone? I'm desperate for advice and need some help. I can't even work or go to school without having a flare up at least twice a week? I just want to live a normal life of a young adult because right now I don't do anything for myself. I don't do anything for fun because the thought of putting anything on besides very big and baggy sweatpants makes me cringes. I'm desperate for answers. Anything helps, thank you and god bless.

mariah2558

Posts : 1
Join date : 2016-12-08

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Post  fairlight10 Thu Dec 08, 2016 11:04 am

I am so sorry you have suffered with this for so long. We all know on this forum what you are going through. Start reading the posts on this forum. They are full of information that may bring you the relief you are searching for. You sound as if you have primary vulvodynia. As you had it when you were so young. Have you any female relation who have suffered similar problems? I am on nortriptyline 20 mgs now. This type of medication is known as antidepressants but in low doses and I emphasis low can give some of us on this forum relief from the symptoms you refer to. Also, you have noticed that urinating causes you problems. Look at the low oxalate diet. Also, some other medications can cause irritation in that area. Omeprazole is one of them.

fairlight10

Posts : 72
Join date : 2016-04-17

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Post  PainBlogger Thu Dec 08, 2016 2:50 pm

A quick summary of what has helped me: duloxetine, acupuncture, physiotherapy/PT (including dilators at home), and mindfulness.

https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement#14400 for the fuller version with some lifestyle changes you might want to try if you haven't already. And, as fairlight says, have a good read through this forum. It may well be that a combination of different treatments/lifestyle changes will help. Finding that combination can take a while but is worth the effort of trying things.

It's a horrible condition, but people do get better. I really hope the specialists you're waiting to see can offer new insights.

PainBlogger

Posts : 219
Join date : 2015-07-27

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