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

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

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

» Help New Diagnosis
New member 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 member EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
New member EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
New member EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
New member EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
New member EmptyMon Apr 08, 2019 7:54 am by Jo44

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- …

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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


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Post  Lisa1627 on Sat Mar 18, 2017 7:37 pm

Hi ladies. I am new to the forum. I have had what I think is vulvodynia. I can honestly say that I hate my life and myself right now.  There are days when I think I would rather be dead. This is going to ruin my life. Sorry for the negativity and I imagine no one on here can relate because I haven't read anyone saying theres is caused by hsv. But I thought I would post anything


Last edited by Lisa1627 on Tue Feb 27, 2018 1:42 am; edited 1 time in total (Reason for editing : Too much info)

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New member Empty I'm sorry you're feeling down

Post  overit14 on Fri Apr 07, 2017 12:01 am

Hello. I wanted to respond to tell you that you are not alone. Although my pain is not related to an STD, it is still very painful and affects my sex life greatly. It also affects how I feel about myself as a woman. So just know that even if you haven't found someone with your exact symptoms, you still have people out here dealing with various degrees of pain for different reasons and in different ways. I hate to hear that you feel like you don't want to live b/c of this. There is always hope. I would suggest to continue looking for support online and def offline as well. I know it's super personal, so the only people I talk to about it with are my mom and one of my friends. Keep researching doctors in your area and see who might be able to help you. Just b/c one or even a few doctors didn't work out doesn't mean there isn't one out there that will. Also, b/c you are feeling so sad, I would look into maybe talking to a professional? Just want you to know someone cares and I'm really sorry you're going through this. I wish I could help and make it all better for you but just know you're not alone. I love you

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New member Empty Thank you

Post  Lisa1627 on Mon Apr 10, 2017 4:08 pm

Thank you for responding to me. I am feeling a bit better as I am on lyrica now, but I still feel pretty hopeless. I just wanted to say that I do appreciate your kind words.

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Post  mary jane on Tue Apr 25, 2017 12:01 pm

the medication doesn't work like anesthetics to trick your brain or anything, they are supposed to try and reprogram it altogether....you can google neuroplasticity for an example.
How have you been btw?
mary jane
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Post  Lisa1627 on Tue Apr 25, 2017 12:30 pm

mary jane wrote:the medication doesn't work like anesthetics to trick your brain or anything, they are supposed to try and reprogram it altogether....you can google neuroplasticity for an example.
How have you been btw?

Hi Mary Jane, I am hanging in there trying to live a life as normal as possible. I am freaking out right now because my doctor wants me to get an MRI to rule out anything. I always think the worst and am dreading that maybe its MS related. Nerve pain can be ms related. How are you doing? You are new to the forum? What is your story? Thank you for responding. Its always nice to have people to talk to as only my boyfriend and 1 friend know my situation as its too embarasing to tell people.

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New member Empty What are your symptons?

Post  rmb on Tue May 09, 2017 8:05 pm

I can definitely say you're not alone in feeling like you would rather be dead. This week for some reason has been the toughest week I've had in a long time since dealing with this (10 years and counting). The latest gyno I seen, her end result was I will most likely never feel relief and that my boyfriend will have to wear a condom...I feel so defeated...and Vulvodynia doesn't affect your sexual partner but my boyfriend complains of a "burning pee hole" after sex with me and even days after sex with me. We haven't had sex in a long time so I don't know if he still feels anything but he hasn't said anything. I just feel at the end of my road, I've been tested for everything and everything comes back normal but I have a constant burning vagina and I can't even have sex with my boyfriend or I will pass it on...I'll be alone forever...I've been having suicidal thoughts for months I just don't want to feel this uncomfortable burning I'm going crazy

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Post  Lisa1627 on Wed May 10, 2017 11:21 am

Hi RMB, thank you for responding to me.

Its funny that you responded because yesterday was also a bad day for me, but lately most days are bad. But don't let you gyno tell you that you will never recover. I know 10 years is a long time and I am feeling hopeless only having this for 6 months. But sometimes all we have is hope! So don't give up.
I also don't think having your boyfriend wear a condom is the worst thing in the world. And it breaks my heart because we love each other so much. He is a beautiful man and has been my only source of comfort thru this whole ordeal. I tell him everyday that he deserves better than me and should go find someone normal. Because I am broken!  I am an attractive 46 year old woman, who doesn't look at all my age, but I feel so bad about myself.  46 is too young to give up on a sex life. I sometimes wish I was older so and over sex so this wouldn't be such a big deal.
So is your pain only when touched or all the time? Mine is burning all the time, touch doesn't bother me. My burning is in my vag and also I get talbone buring and a burning in my butt (feels like a sunburn). Have you tried Lyrica? Its making me gain weight which I hate, but it has helped with the pain.
Last night I sat in the tub with my boyfriends razor staring at my wrist wondering if I could ever really do it.  I know I would need a different razor, but the having those thoughts really scares me. Please write back! Lisa


Last edited by Lisa1627 on Tue Feb 27, 2018 1:45 am; edited 1 time in total (Reason for editing : Tmi)

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Post  rmb on Wed May 10, 2017 7:40 pm

My pain is burning in my vag constant...sometimes it's worse than others for some reason but none the less it is there, rain or shine. I agree my boyfriend wearing a condom isn't the worst thing but I feel like that's a band aid to the problem "just put a condom on and pretend nothing is wrong." I haven't even told my boyfriend about my problem only because I don't know what to tell him..."Hey Babe, I have a constant burn in my vag and the doctors say nothing is wrong with me but sorry it's making your penis burn too." If I knew 100% what was wrong I would tell him and we would figure it out. I know that Vulvodynia makes the most sense for me as every test comes back as normal and trust me I've been tested for every possible thing just the only thing that does not make sense is that it affects my sexual partners. I've had 5 boyfriends and everyone has complained at some point or another. I would rather have Vulvodynia and do all the steps to help beat it then to just not know...that's the part that's killing me is the not knowing...Has your boyfriend ever complained of having a burning or irritated feeling after sex?

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Post  Lisa1627 on Thu May 11, 2017 12:15 pm

I would have to say that you must have something else going on that's not being detected by testing... No my boyfriend has not complained about burning. Have you tried using probiotics for women? Maybe its some kind of BV that tests aren't finding? I wish I knew what to tell you. How long have you been with this boyfriend? Isn't it hard to keep this from him? I am depressed alot from this and there is no way I could keep it from my boyfriend because of how said it makes me. How old are you? Where are you from? You can PM me if you want. I'm just asking questions to get to know you more.

Talk to you soon!
Lisa

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Post  rmb on Thu May 11, 2017 3:03 pm

I have PM'd you!

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Post  mary jane on Tue Jun 06, 2017 10:32 am

Lisa1627 wrote:
mary jane wrote:the medication doesn't work like anesthetics to trick your brain or anything, they are supposed to try and reprogram it altogether....you can google neuroplasticity for an example.
How have you been btw?

Hi Mary Jane, I am hanging in there trying to live a life as normal as possible. I am freaking out right now because my doctor wants me to get an MRI to rule out anything. I always think the worst and am dreading that maybe its MS related. Nerve pain can be ms related. How are you doing? You are new to the forum? What is your story? Thank you for responding. Its always nice to have people to talk to as only my boyfriend and 1 friend know my situation as its too embarasing to tell people.

I was never embarrassed to tell others but I could see they feel embarrassed FOR ME if I tried to open the topic ...whatever, fuck them.
It really sounds like you have post herpetic neuralgia ..I don't know why they call it vulvlodynia
I found some info on other forums
https://www.ic-network.com/forum/showthread.php?52591-Genital-Herpes-A-Non-Traditional-Cause-of-Pudendal-Neuralgia
http://www.healthboards.com/boards/trigeminal-neuralgia/462517-genital-post-herpetic-neuralgia.html

I would go back to your doctor and mention this ..I can't believe doctors plaster vulvodynia on so many different types of symptoms and conditions...

Oh, and definitely stick to your medication for the time being... Most likely it is going to go away for you, I'm sure..

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Post  Lisa1627 on Tue Jun 06, 2017 11:47 am

Hi Mary Jane, I am also taking antivirals, but they do nothing for the pain.

I haven't done the MRI because i am too afraid.

I have had this for 8 months now. It doesn't seem to be going away.

Thank you for responding.
Lisa


Last edited by Lisa1627 on Tue Feb 27, 2018 1:39 am; edited 1 time in total (Reason for editing : Too much info)

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Post  mary jane on Tue Jun 06, 2017 12:33 pm

Lisa1627 wrote:Hi Mary Jane, I did mention the post hepetic neuralgia, so I am also taking antivirals, but they do nothing for the pain.

I haven't done the MRI because i am too afraid.

I have had this for 8 months now. It doesn't seem to be going away.

Thank you for responding.
Lisa

Sad I'm sorry to hear ..
I think it will go away with time. IT should
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