Vulvodynia Support
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» Hope to all my suffering ladies
here's hoping! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
here's hoping! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
here's hoping! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
here's hoping! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
here's hoping! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
here's hoping! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
here's hoping! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
here's hoping! 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!
here's hoping! 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


here's hoping!

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Post  Alana3 Wed Jul 30, 2014 1:53 pm

So I got my vestibulectomy on December 5, 2012.  Everything has been perfect.  Except my periods were incredibly painful and awful (Bleeding every 2 weeks!) after that surgery.  We assumed it was the birth control, which also made me manic and depressed.  So I switched to Yaz.  I also had a diagnosis of endometriosis.  My periods were SO heavy and I got EVERY symptom.  I became very depressed and suicidal.  I could hardly make it out of bed.  So my doc put me on Yaz continuous mode so I wouldn't have a period.  This didn't work as planned.  I bled everyday, I felt like crap, my boobs hurt, I was depressed.  Finally, got off that and went on Zenchent.  Same thing, so doc told me to take two a day.  My boobs went from a C to a DD (OMG IT HURT LIKE HELL!), I would cry at everything, nausea, blah blah.  I woke up one morning COVERED in blood and passing clots.  The only positive is I didn't get pregnant, which would be hard anyway, because my bf is sterile! haha  Hydrodcodone didn't touch that pain.  So I set up a surgery date.  Then the hospital set it up wrong.  So finally went in to my doc begged him to get me off BCPS.  my period lasted about a week and went away and DIDNT come back for another MONTH (HOLY SHITTTT!!!!!)!!!!! haha it was the easiest period I have had in quite some time.  More annoying than anything.  So I decided to stay off even though my doc has told me an IUD would help.  No thanks doc.  I hate being depressed, I hate my boobs hurting, the acne, the weight gain, the constant bleeding that left me anemic, yuck.  BUT more importantly I HAVENT HAD A YEAST INFECTION IN OVER 2 MONTHS!!!!!! Why am I sharing this with you guys?  I know a lot of women on here have frequent yeast/uti/bv.  I was calling my doc every 10 days for a Diflucan prescription because of frequent yeast.  I haven't had a problem in 2 months!  Now I am not saying throw away your pills.  Some of us need them and I understand that.  But it might be worth looking into.  Since every single one of us (for the most part) started with yeast, bv, uti... I'm wondering if the pill could have been the culprit?  I am going to continue off the pill and see if it helps.  Thank GOD the bf's doc said we had about a one in a million chance of getting prego (since I don't want kids this is perfect for me!) and if I wanted to get prego my only chance using his sperm was with IVF.  I told him hell no! But seriously, I only get itching now after sex and its only for about 20 minutes (I think its the friction that causes the itchy sensation).  So I am hoping that I will become a normal patient and only have to visit my doc once a year.  What do you guys think about any of this??

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Caropes Wed Jul 30, 2014 2:04 pm

Thanks for your story. I have been reading a lot about this and am contemplating going off BC. I am only on it to alleviate symptoms of peri-menopause anyway. And since my V.V. Is so bad, I am not having sex with my hubby so no chance of getting pregnant!

Caropes

Posts : 58
Join date : 2014-06-02
Location : Alabama

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Post  Alana3 Wed Jul 30, 2014 3:07 pm

No problem!  There are non-hormonal options (condoms, spermicide, etc) NO MORE hormones for me!!! haha

what are you doing for you v now?  I remember reading stuff, but honestly was in such a horrendous mood I just don't remember what you said Sad sorry! You can try it, cant hurt, and if it doesn't work for you, you can always go back on!

Alana3

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Post  Caropes Wed Jul 30, 2014 7:05 pm

I am currently on Gabapentin 1800 mg/day and Amitriptyline 50mg/day. I am also trying to follow the low-oxalate diet. The meds have helped a bit but my pain level is still consistent at 4-5. I would give anything (short of giving up son) to not have this horrible condition!!!

Caropes

Posts : 58
Join date : 2014-06-02
Location : Alabama

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Post  Alana3 Wed Jul 30, 2014 7:19 pm

Is it all the time?

Alana3

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Post  Caropes Wed Jul 30, 2014 7:46 pm

Unfortunately, yes. It is chronic, unprovoked v.v. Started about 4 months ago after I was treated back to back for B.V. with Metrogel.

Caropes

Posts : 58
Join date : 2014-06-02
Location : Alabama

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Post  Alana3 Thu Jul 31, 2014 1:01 am

Thats awful im so sorry. Try a baking powder bath it worked for me... maybe you'll find some relief?

Alana3

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Post  zarli Thu Jul 31, 2014 6:02 am

Oh Cathy I am so sorry to hear your still in pain. It is horrendous I know. I am here for you to talk to any time xx

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  zarli Thu Jul 31, 2014 6:04 am

Alana so happy for you and fingers crossed you stay well.xx

zarli

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Post  Alana3 Thu Jul 31, 2014 12:57 pm

Thank you, Zarli.  How have you been?

Alana3

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Post  zarli Fri Aug 01, 2014 5:42 am

I have been struggling with a flare due to a new job, but I think I am improving now. Today I just feel sick of it. You know those days when you just think f___ it I've had enough? But anyway I just love reading stories of you girls on here that have positive times its great. And god knows you have been going through this for years haven't you ? Glad for you xx

zarli

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Location : Australia

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Post  sailor_moon Sat Aug 02, 2014 12:15 pm

I totally agree with you about birth control/ the pill. After doing my research about what it actually does to your body I never want to go on it ever again!

I am unfortunate enough to have an unruptured brain aneurysm so I've been told strictly to stay off the pill for as long as I live, so at least the doctors can't try and force me to take it as it can endanger my life with the risk of blood clots associated with the pill.

It makes me wonder, so so many young women (like me) get put on the pill at a young age to control periods and other hormonal problems. The pill only masks these problems, so as we get older and want to come off it to start a family ect, the problems we had when were younger often come back in full force. Doctors should be trying to find the cause of someones problem rather than lie and tell young women "the pill will FIX the problem, because it doesn't! ".

I get that in some cases the pill and other BC hormones are the only option. For example if someone is estrogen deficient and needs to take estrogen to fix the problem.

I really wish that back in the day mum and I had done more research rather than just listen to the doctors who said putting me on the pill at 17 would fix everything. Every single time I have come off it, things have gone horribly wrong.

Alana I wish you all the very best and pray that you are finally on the mend, permanently! X
sailor_moon
sailor_moon

Posts : 222
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Post  Alana3 Mon Aug 04, 2014 1:16 pm

And today I wake up with a burning vag and a UTI (at least we know the burn is from the urine! haha) antibiotics here I come- but still I'd rather this then other things, but man I gotta peeeeee lol

And Zarli, been dealing with something woman disease related since I was 14.  I'm 28 now :/ YUCK!!!!!

Alana3

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