Vulvodynia Support
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» Hope to all my suffering ladies
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Itch Scratch Cycle? Tired Of Hearing This BS!!!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Itch Scratch Cycle? Tired Of Hearing This BS!!!! 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!
Itch Scratch Cycle? Tired Of Hearing This BS!!!! 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


Itch Scratch Cycle? Tired Of Hearing This BS!!!!

+2
Kathye10
BpCookie
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Itch Scratch Cycle? Tired Of Hearing This BS!!!! Empty Itch Scratch Cycle? Tired Of Hearing This BS!!!!

Post  BpCookie Mon Jan 21, 2013 5:46 pm

I have Vulva Lichen Simplex Chronicus. When I do a search on this to try and find answers and treatments, I get a bunch of bull shit about the-itch-scratch-Cycle and doing away with soap irritants. I have NEVER had an itch-scratch-cycle. I have noticed that this psycho babble is coming from male Dr.s who think they know the cause and the treatments. I see crap like "Stop scratching and you will no longer have pain", "use a daily steroid ointment", "take Gabbapentine", I am so tired of this. I just want to scream. I would just love to bitch slap everyone of these useless Dr.s.

Also, I have been to my Gyno so many times that she no longer recognizes me by my face, only my vagina. She gets down and looks and then says "Oh, yes, I remember you". Only kidding about that part.

One more thing. DR.S GET YOUR HEAD OUT OF YOUR ASS AND FIND US SOME RELIEF!!!!!!!!
BpCookie
BpCookie

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Post  Kathye10 Sun Feb 24, 2013 4:30 pm

Hi Bpcookie,

I agree and feel you!! I get that they are trying to help us feel better at THAT moment, but throwing drugs and creams our way sometimes makes matters worse. Especially steroid creams. I won't touch those with a 10 foot pole. Thinning of the skin?? Oh yeah, because that'll help long term! Mad

I'm just as frustrated with Dr's. How can you be a gynecologist but I've done more research and know more than you do? Give me the license to practice medicine and I'll cure my damn self! lol!

Have you tried any natural remedies?
Kathye10
Kathye10

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Post  BpCookie Tue Feb 26, 2013 4:29 pm

LOL re- cure your damn self. Too funny, but I know exactly what you mean. Every, friggin Gyno in the state of Arizona has seen my vagina, more than once and way more than my poor husband. They no longer recognize me by my face. They come in, shake my hand and say "nice to meet you", then they bend down and look at my vagina and say "oh yes, I remember you". uuuggghhh

I have tried pure Emu oil and I think a few other natural things but nothing has helped yet. Have you tried any?
BpCookie
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Post  BpCookie Tue Feb 26, 2013 4:39 pm

huh, I just realized that I used the same vagina joke. LOL. I was gonna add that I have tried extra virgin olive oil, tea tree oil, sesame seed oil, just about any pure oil that I can find.
BpCookie
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Post  Alana3 Tue Feb 26, 2013 6:16 pm

Ugh I couldn't imagine using oils it keeps bacteria and yeast in, maybe that's why you're itching so bad??? My doctor said no to all of that unless your ingesting it, but what do I know? lol

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Post  BpCookie Tue Feb 26, 2013 6:58 pm

Oh, I don't itch, I've never itched. I only have burning. Thats why I get so pissed off when I read Dr.s BS about the *stopping the itch-scratch-cycle". I wanna read about the burn-fire-crotch cycle. lol. Right now I am using A and D ointment, Lyrica, weekly Fluconozole, ice packs and sometimes Amatryptaline Ointment. Nothing else seems to help and these things that I use now hardly help at all. I stopped using all the oils once I realized they were useless. Neogyn, suppositories, steroids and a bunch of other crap that I cant even remember. Plus HG injections, expensive and useless. Also now Im having procedures done. Pudendal nerve RFA and also Ganglion par RFA, all useless, time consuming and expensive. *sigh*

Thanks so much for your replies. They are very much appreciated. It feels like someone is listening. Smile
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Post  m18 Thu Mar 07, 2013 2:09 am

Heyy I totally agree with all of you! The doctors are useless they didnt even diagnose me till I found out about vulvodynia myself and matched the symptoms. I dont think they know what their talking about and do chat absolute bullshit. I feel for you all as I'm also going through the same thing and desperate to find a treatment that works! I've tried coconut oil which tends to sooth the pain but doesnt cure it I'm now being reffered for phycasexual therapy and going to start physio when I finnish uni is anyone else having therapy?


m18

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Post  catarific Thu Mar 07, 2013 12:01 pm

I am puzzled because itching is one of my main symptoms. I had gotten a uti which made it worse even after the uti cleared up. But it was the itching that made me aware that there was a name to what I am experiencing.....

catarific

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Post  BpCookie Wed Apr 03, 2013 3:28 pm

I was told by a Dr. that the reason that there isn't a lot known about Vulvodynia, is because there hasn't been enough research done. The reason that there hasn't been a lot of research done is because there is no money in it. Most medical researchers want to find the answers to the big things, like Cancer and the big money makers, like Cancer. Even Erectile Dysfunction gets more research and my guess is because its a mans issue. Us women suffer in silence (besides when we scream, cuss and bang our heads against the wall). Its an embarrassing thing for us to point down at our crotch and say "Hey, my friggin bush is on fire!!!!!!". So us women get left behind. I hate to admit it, its still a mans world. OMG, if there was a disease where it causes freckles to appear on the penis, you better bet they would find an answer to THAT. Don't want those poor men to be embarrassed, now do we? AAAAAAAAAAAAHHHHHHHHHHH Screw the men and their stupid shit!!!!!

They found a treatment for ED but they didn't find a treatment for those poor women who can't have an orgasm. They found a way to treat Jock Itch but nothing to treat a itchy vagina thats caused by Vulvodynia. Goodness gracious, can't let those poor guys have itchy balls. Ok, I'm getting off my soap box.......for now. Smile
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Post  BpCookie Wed Apr 03, 2013 3:33 pm

Catarific, Some women itch, some women burn and some women have both at once. Mine burns. Perhaps its because I have Vulva Lichen Simplex Chronicus. But either way, itching and or burning, it is a terrible thing for us to suffer from. hugs to you
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Post  Alana3 Wed Apr 03, 2013 3:41 pm

haha bpcookie I missed you, you are hilarious Smile

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Post  Alana3 Wed Apr 03, 2013 3:44 pm

Also, I saw you were in Arizonia, my doctor was showing me the different types of vulva diseases he treats (morbidly curious here) and he said he had treatment for LS. I don't know if you're interested or if you found something that's working for you, but he's located in Florida. He fixed my VV (not I just have vaginismus or whatever, and its a pain in the ass but nothing like before) just thought I would pass along the information in case you were looking for someone/something. Let me know if you might be interested. He showed me pics of that that looks horrible- I hope you are getting some relief! This shit sucks!

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Post  BpCookie Wed Apr 03, 2013 4:07 pm

I Alana dahling, I do try to keep a sense of humor about all of this. If I didn't have a sense of humor, I would go mad and foam at the mouth, instead of foaming at the vagina. I was MIA because I couldn't get to this site. I kept ending up on some stupid Go Daddy Dot Com bull shit. Some how I finally found a way around it. I also ended up making my own Vulva and Vaginal Pain Support group on WebMD. I noticed that WeMD didn't have any support group for Vulvadynia, so I made one. I also have many other support groups that I belong to, Bipolar support, pain support, womans health support, sexual health support, etc. I also created Grumpy Groupies which is on WebMD, its an exchange where everyone goofs around mostly, telling jokes and such. If ever your needing a laugh, you can join my Grumpy Groupies. Smile

Anyways, thanks for the info. on the Dr. in Florida. I wish that I had the money to fly over but then again, I can't sit that long. Me and hubby haven't even went on a vacation for two years because I can't sit long enough in a plane or car, to get anywhere. I am glad that you found a dr. that could help you. So sorry to hear about the vaginismus. Its just one thing after another isn't it.

hugs to you
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Post  Alana3 Wed Apr 03, 2013 4:31 pm

Damn woman you're in a lot of groups! Well if you can sit long enough whenever come.for a visit! I joke about my vag too but everyone who's normal thinks im morbid it's not my fault she's sensitive!

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Post  Loulou Thu Apr 04, 2013 3:10 pm

Hi Bpcookie - i feel for you, i know from your posts that you've tried a lot of things. Just wondering how confident you are with the Lichen Simplex Chronicus diagnosis if you don't have one of the key symptoms? Were you biopsied to get that diagnosis? I have a vague recollection from one of your previous posts that you said you were diagnosed a few years ago (???) in which case knowledge of vulval problems would have been even less that today's pitiful state of knowledge - so have the different specialists/docs you've seen since confirmed that diagnosis? That's probably a stooopid question but thought i'd ask!


Last edited by Loulou on Thu Apr 04, 2013 3:10 pm; edited 1 time in total (Reason for editing : spelling)

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Post  BpCookie Thu Apr 04, 2013 4:00 pm

Hello Loulou, I had two biopsies done. The first one was done two years ago, when the Hell started. Then a year later, I asked my new specialist to do another biopsy. She took skin from about three different places and confirmed that it is Lichen Simplex Chronicus. Just by looking at my vulva, you would hardly know anything was wrong, besides a bit discoloration, swelling and redness. Never really itched. That's why I get so frustrated reading all the *itch-scratch* information. Most on-line information that I have read says the same things about stop the scratching and remove all the irritants, use a corticosteroid ointment and take an antidepressant. They make it all sound so straight forward and cut and dry. They are trying to fit us all into one mold but we are all different, individuals with different symptoms and different needs. Thats why I love this support group here. Everyone is so full of information and have their own stories. I've learned more being on this board, then I have learned from all my Dr.s Smile

Thanks for replying. Take care. hugs
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Post  BpCookie Thu Apr 04, 2013 4:27 pm

Alana dahling, The reason why I belong to all of those support groups is because I have many different health issues. I guess you could say that I'm a real sicko. lol. geek Hope your having a good day dear. hugs
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Post  Loulou Thu Apr 04, 2013 4:35 pm

Thanks for answering my question BPcookie. And I so agree with you about the one mold thing. There isn't one treatment fits all and i think thats another reason why there is so little research done on vulval conditions - they are complex and individual cases can vary so much even with the same diagnosis, and there's no glory for researchers in solving one person's problem!

Keeping my fingers crossed for you with your femoral nerve procedures and hoping they provide you with some relief. Keep us updated.
x

PS And this forum has been a lifesaver for me too. Everything i've tried, with the exception of Lidocaine which was given to me when i was diagnosed, has come from this forum. Thank you girls - keep sharing! Very Happy

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