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

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

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

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

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

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

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

» Help New Diagnosis
Devastated and Angry 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!
Devastated and Angry 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


Devastated and Angry

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Devastated and Angry Empty Devastated and Angry

Post  shortstuff Sat Mar 03, 2012 3:12 pm

My VV symptoms had GONE AWAY for NEARLY TWO WEEKS!! Then I got an irritated little bump, from what I assumed was a reaction to a condom (because yes, i FINALLY HAD REAL SEX AGAIN). So, I go to my new Doctor and was told I HAVE FUCKING HERPES NOW TOO. And she was another overly happy, unconcerned doctor which made it that much harder to understand what the hell she was saying.

Her: "Oh, that's herpes hun!"
Me; "WHAT?!"
Her: "Well, on the brightside, you don't have to worry about your partner catching it! He probably gave it to you ::Smiles::"
Me: "uh, yeah, he'll be thrilled."

If I'd had my clothes on at that point, I would have walked out. That was the dumbest brightside anyone has ever pointed out to me.

So the pain level (I lucked out and have the HSVI so it was just like having a cold sore, not a cluster and after researching herpes I'm soooo thankful because there are some horror stories) is not even near what the VV symptoms had been, it has just been a nuisance. They put me on viral suppressant to try and help the outbreak go away quicker. The sad thing to me is that I could have had this before and now given it to my current partner. I knew my ex had been having an affair, I could have gotten it from him. I could have gotten it many years ago and now had my first outbreak. I could have gotten it from my current partner. I have no way of knowing. But i'm so angry at the world right now that I have it, period. My current partner got tested before we had sex, but did not know they only do a herpes test if asked. So, he could have had been the carrier. He has been so amazing through everything. When I was freaking out about who gave it to whom, he just looked at me and said "it doesn't matter. Fact is, it's something we have to deal with, and we will get through it together.". He's going to the dr. to get a bloodtest to see if he has it, i might not even have passed it to him if I was the carrier. This experience made me realize how lucky I am to have him in my life, and strangely it's brought us a lot closer (which I didn't think possible).

So,I ask the doc then if all my symptoms had been H related, but NOPE, I got two pain problems! Hooray! Since, I wasn't having VV symptoms at that time, she did nothing for that but gave me Difulcan because I had some strains of yeast left.

So the first blister has now scabbed over and isn't bothersome anymore, but i woke up this morning with the VV SYMPTOMS AGAIN!!! I AM BEYOND FRUSTRATED WITH MY VAGINA AND BODY. I'm wondering if the Difulcan started that back up since I took it last night. The herpes diagnosis bothers me only because it's a lifelong condition, but I know it's not the end of the world and the more time that passes the less it'll even impact my life. I think I'm not freaking about that because the pain didn't even really compare to what I had been going through for a year, it honestly felt like a pimple that needed to be popped. Once it burst, however, I had a day of agonizing pain like it was a burn, but that only lasted a day and then no pain at all. I'm just so TIRED OF BEING IN PAIN. One problem goes away and another pops up.

Just needed to vent.

shortstuff

Posts : 41
Join date : 2012-01-22
Age : 36
Location : Florida, United States

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Devastated and Angry Empty Re: Devastated and Angry

Post  notavfan Mon Mar 05, 2012 3:31 am

I understand this! But I got the GHSV1 before the VV... from oral.... while still a virgin. You are lucky to have a guy like that in your life!!

notavfan

Posts : 16
Join date : 2012-01-02

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Devastated and Angry Empty Re: Devastated and Angry

Post  naomi Mon Mar 05, 2012 10:33 am

too right, have a vent. Have a massive screaming paddy (whilst ur partner is out of the house). slam some doors, cry until ur face is red and puffy and nose sore from wiping it. I do this...less as time has gone on. I think I would have burst with emotion and pressure if I hadnt.

smashing plates on the kitchen floor was a good one..and two mugs. This was when i was back living at home with my folks...I did replace them, but boy it felt good at the time. If people say to me "positive mental attitude" I could give them the latter...dont PMA me god damn, ur not living with this shite.

hugs too with my mum...and a cry together. It helped my mum release her pain for me...it breaks her heart to see me like this for so long. But now it impacts less on my life (when im having a good time with less anxiety/depression) we have more laughs.

having this has made me realise my mum isnt just a caring, loving mum. Shes my best friend and my rock. Sometimes I feel i rely on her too much, but I dont think she minds. anyone would think i was 13 not just tired 30 Smile
naomi
naomi
Moderator

Posts : 262
Join date : 2010-04-09
Location : Cheltenham

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Post  shortstuff Mon Mar 05, 2012 11:31 am

Thank you notavfan and Naomi for your replies.

The Valtrex they put me on made me feel soooo sick (nauseaus and ITCHY, my whole body itched like crazy) and I believe depressed. I could barely function, so I've stopped taking it. This shit is hard enough to deal with without being MORE depressed. I've started taking L Lysine instead at the pharmacists recommendation. Notavfan, have you had any success with this?? They think I got mine from oral too. Are you on viral suppressants? This first outbreak is terrible; everytime one goes away, another pops up which makes me think the med wasn't even helping.

Naomi, we are both lucky to have found such wonderful partners! I don't know how I'd cope without him right now, he's definately my rock. There's no one in my life other than him I have available to talk to about any of this. I'm not an open person by nature, so the fact he's been able to break through that shell amazes both of us Very Happy He was very persistent though!

shortstuff

Posts : 41
Join date : 2012-01-22
Age : 36
Location : Florida, United States

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Devastated and Angry Empty Re: Devastated and Angry

Post  notavfan Mon Mar 05, 2012 9:54 pm

It's new to your body so your body is just trying to kick some butt right now! It will get better! I only really had the outbreak when I was diagnosed and possibly another time. I take absolutely nothing for it. It's been years since I've had it. Some good news is that 80% of the population already has HSV1, so, unlike vulvodynia, we are now in the norm. lol. If you ever need info or anything about GHSV1, let me know Smile

notavfan

Posts : 16
Join date : 2012-01-02

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Post  shortstuff Tue Mar 06, 2012 11:28 am

Thank you notavfan. I hope mine turns out like yours and goes away for years Very Happy I'm working on upping my immune system right now. From all my readings, that seems like the most important and logical. And staying away from stress... which means, I have to stop reading all the horror stories found online!! I mean, really, I didn't even know i was having an outbreak until they told me, I thought I had a pimple Mad Reading so much about it made me feel like I was dying and the meds made me feel sickly.

One question I do have though, is how do you explain it to partners? I'm only 24, so I don't know if my current partner will or will not be my partner for life. I hope he is, he is wonderful, but we have a lot against us and I'm been realistic lately about our overall chances (he is 12 years older, has a daughter, just a ton of life differences). I told a friend of mine (a guy) who absolutely freaked out and made me feel terrible about myself, and he's known me for ten years (his exact words, "well, your life is ruined now!"). *I* didn't even freak out that bad! It was like, WOW, if he can't see past the stigma and realize I'm the same damn person I was yesterday, this really is going to effect things.

shortstuff

Posts : 41
Join date : 2012-01-22
Age : 36
Location : Florida, United States

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