Vulvodynia Support
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» Hope to all my suffering ladies
So over this! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
So over this! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
So over this! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
So over this! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
So over this! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
So over this! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
So over this! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
So over this! 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!
So over this! 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


So over this!

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Post  sailor_moon Sat Nov 01, 2014 1:05 am

This week has taken its toll on me. Currently sitting at home by myself doing nothing all weekend. I'm just having a big old cry.


I'm sick of the itch and burning...especially at work or in public where I have no means of relief. 
I'm sick of getting extreme period pain but no period. Wtf is that? I havn't had a period since early July. I've had 4 real periods this year. Sick of the pain I get, being armed with a swarm of pads in case I do bleed, but nothing happens.  It's very frustrating,  because when I do finally bleed it's gonna be:star: like someone has gone on a killing spree.. I won't be able to cough or sneeze without filling an entire pad. And what looks like chopped liver coming out of me. Not to mention the pain that goes with it.
My boobs are so sore it even hurts to wear a bra. What the hell is causing that? I'm not pregnant and I am eestrogen deficient to the max, so why are they sore?


Online shopping...looking at all the wonderful summer shorts that I can't wear that I would usually live in over summer. Looking at all the gorgeous dresses and heels I would usually wear out to dinner but I no longer go out because of the fear I'll need to puke, or 1 late night leads to 5 days of extreme fatigue afterwards.

I would usually be planning a beautiful holiday for my husband and I to go on. But I haven't had a holiday in 2 1/2 years...the past year and a half has cost me over $10,000 in medical bills, paying for incompetent doctors with no answers. Combine that with minimum wage and a mortgage to pay for it doesn't leave me with much. And every spare cent I get I have to save because my bosses might fire me because I'm sick. And living and feeling the way I am, a holiday is pointless because I can't enjoy myself because I'm itchy, burning and fatigued outta my brain.

I just stay at home on weekends and don't socialise coz I feel like shit. I look like shit because my hair is dry, brittle and thinning.  I have acne. I'm all bloated up from not getting my periods for so long.

A lot of people probably think I'm being petty and selfish but I don't care. I think every single woman on this forum has every right to feel sorry for themselves. Noone should have to go through this. It destroys your quality of life and your self-esteem. 

I hope everyone else is coping a bit better than me. Its just one of those days I guess.
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  Alana3 Mon Nov 03, 2014 7:48 pm

are you on the pill? you sound like I was about a few months ago. I also got a drug that significantly reduced my period to nothing (like liners the entire time). I love that drug! But seriously, you sound like me and if you are on the pill GET OFF OF IT! Let me know if I can do anything I know where you're coming from... and it's weird to hear summer its getting cold over here haha well "cold" for Florida Smile

Alana3

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Post  sailor_moon Mon Nov 03, 2014 8:04 pm

Thankyou Alana. I appreciate the response, I didn't expect one seeing as I'm being such a sook.

Nah Im not on the pill, I've been off it for almost a year now. I will never take it again for as long as I live!

I know you had Endo, can I ask what your symptoms were?
My doctor suspects  I have it and I am on a 3 month waiting list for a laparoscopy and Hysteroscopy,  which I am totally freaking out about. Are you  really sore afterwards? How much time should I take off work? My doctor will be doing it,  and he said he will be having a really good look at everything and fixing any form of problem that is there. Apparently they go in through your bellybutton. ..and I have a major bellybutton phobia!  In the sense that if I see a baby that has recently had its cord cut and its bellybutton is all gross, I'm out the door dry reaching! I don't want my bellybutton to look like that after...its freaking me out!
Now that really is just me being a sook!lol

Was your vulvodynia contributed by your Endo at all? 

Sorry for the 1 million questions, you are literally the only person I know who has been through it all.
sailor_moon
sailor_moon

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Post  Alana3 Tue Nov 04, 2014 7:23 pm

I never had the lap because my symptoms disappeared after I got off the pill praise jesus. Why do they make you wait thats insane? My symptoms were: severe awful cramps, nausea, headaches, really bad bowel issues (hurt like hell when I pooped during my period), nonstop bleeding, swollen boobs, bloating, extreme exhaustion (still have that), but they cleared up as soon as I got off the pill.

I did have a hysteroscopy, that was a bitch and embarassing. My boyfriend came in, I stood up and bled all over the floor so make sure you have tons of pads- no tampons or anything for at least 2 weeks. No sex. Make sure to stay on your pain killers!

No, I don't know why my vulvodynia decided to rear it's ugly head, I always had women problems, frequent UTI's when I was little, first yeast infection when I was 17. Vaginal anything (sex, tampons, etc) used to freak me out so bad I'd have extreme anxiety because it hurt. I remember one day when I was 3 I was bleeding there, and no one really figured out why. When I was 9 I horseback rode and my vagina hurt so bad after and I remember talking to my mom about it. I still ride now though and no problems.

Honestly, I think take 2 weeks off work after your surgery, get Gas-X you will have gas pain take them a few days before and after (seems silly, but it helps), make sure to walk as soon as you can, don't over do it. Make sure someone is with you for the first 2 days. Get a heating pad and all your stuff set up in advanced. Were talking pads, magazines, food, heating pad, Gas X, pain killers, movies, anything you might need...

Your belly button is not going to be gross it's gonna be covered anyway right after, but you can barely see the scars from everyone I saw (boyfriends sister and various friends). Let me know if you have any other questions.

Alana3

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Post  sailor_moon Wed Nov 05, 2014 2:22 am

Jeez, I have every single symptom you had except for the non-stop bleeding! I don't get my periods at all..  I havn't had one since July.

As you have probably seen in my previous posts, I have a rare form of PCOS and extremely low estrogen leves... take those 2 factors out of the mix and I'd probably be bleeding like a bitch too. On the odd occasion I do get my period,  it is super super heavy....to the point where I step out of the shower onto the bathroom mat and blood will pour out of me onto the floor.

I'm glad you told me what to expect...needless to say I will be super sore and sorry after having the laparoscopy as well on top of it. I have to travel an hour and a half to the hospital for surgery. I think I might have to book a motel for the night maybe.

As long as I get answers. Seriously,  if the itching and burning wasn't involved I could probably deal with it....I just want the discomfort gone more than anything.

I just hope that it is all related....not completely different problems. I know you had provoked vulvodynia,  but mine is non provoked and I don't know how they can fix that via surgury. 


Can I ask how old you are and how old you were when your full on vulvodynia and endo started? Did they both start together?
sailor_moon
sailor_moon

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Post  Alana3 Wed Nov 05, 2014 9:08 pm

I am 28. I don't really know my periods were always horrific from when I started at 14 and obviously wasn't having sex at that age (ok maybe not so obvious, but I wasnt haha). When I did have sex for the first time at 18 it hurt really bad, but I thought it was just because of my first time, then I started having it regularly and it wasn't a big deal. BUT then out of the blue it started hurting again at about 20 or so and didn't stop until I got the surgery and I was 27...

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