Vulvodynia Support
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» Hope to all my suffering ladies
Birth Control? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Birth Control? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Birth Control? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Birth Control? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Birth Control? EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Birth Control? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Birth Control? 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!
Birth Control? 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.

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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 …

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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 …

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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 …

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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 …

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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


Birth Control?

+4
Sarah001
jules
hopeful
itchyandscratchy
8 posters

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Birth Control? Empty Birth Control?

Post  itchyandscratchy Fri Jun 17, 2011 1:49 pm

My vulvodynia seems to follow a predictable cycle along with my hormonal cycle, so that it gets worse about the week before my period and stays pretty bad during. I know there quite a few posts on here discussing whether hormonal contraception can make vulvodynia worse or even trigger it, but what I've been wondering is if contraception which prevents periods or lightens them could actually improve things (not least because it would mean less time wearing pads, which definitely don't help). Probably a bit of a crazy idea, but I do wonder as I've never been on any kind of hormonal birth control.

Has anyone had an experience of birth control helping the condition?
itchyandscratchy
itchyandscratchy

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Post  hopeful Fri Jun 17, 2011 2:26 pm

Hi
I am on a contraceptive that basically stops my periods. I didn't have vulvodynia before I went on the pill so can't say what my pain would be like if I wasn't on it but my pain has been really bad whilst on the pill so I would guess that it isn't doing anything to reduce it. Everyone is different so I'd say it's worth trying just in case it does help you.

hopeful

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Post  jules Sat Jun 18, 2011 3:02 am

Hormones definitely plays a part in the pain prior to the period. My pain always increases significantly about a week prior to my period and about two days into may period. I have never been on birth control pills or any IUD's.

jules

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Post  Sarah001 Sat Jun 18, 2011 1:08 pm

Oddly I find my pain isn't so bad just before and for the first days of my period, I think this might be because my brain is occupied with my horrendous back pain I get at that time due to increased ligament laxity though.
Sarah001
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Post  Sebby (Admin) Mon Jun 20, 2011 6:17 pm


I do find I get much more burning and soreness before my period and in the last few days of it.

I was first put on Cerezette by the gynea (mini pill to stop periods) trouble is I bled for 3 months on and off! When my periods finally did stop I felt dry and the soreness didnt go away

I then tried normal combined pill but it didnt help my pain

I got off contraception and let my periods return to normal. I am quite nervous now about hormonal contraception :/
Sebby (Admin)
Sebby (Admin)
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Post  itchyandscratchy Mon Jun 20, 2011 7:04 pm

jules wrote:Hormones definitely plays a part in the pain prior to the period. My pain always increases significantly about a week prior to my period and about two days into may period. I have never been on birth control pills or any IUD's.

Wow! You're like my vulvodynia twin! =P lol

Sebby wrote:I am quite nervous now about hormonal contraception :/

Well that's understandable, pretty much how I feel about it.
itchyandscratchy
itchyandscratchy

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Post  Aussie Tue Jun 21, 2011 2:05 am

I have read too much about obc causing v, I am coming off it as of tomorrow. I will probs bleed for like 3 months because I have missed a pill before and bled for a month. Hopefully I will be better off for it though. Can't wait to get this crap out of my body.

drug free apart from oxytrol patch Smile - no increase in pain since coming off drugs.

Do you research before stopping your periods, they are natural. I made a huge mistake going on the pill.

Aussie

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Post  Vulvosaurus Mon Jun 27, 2011 11:28 am

Hi all,

I'm new here. Nice to meet you all!

I've been taking the mini pill for around twelve months and have not had a period for ... around twelve months. My Vulvodynia began about nine months ago. It took me about 4 months to get a diagnosis, which I know is pretty quick compared to some.
Maybe you guys have already seen this, but I'll link to it anyway ...

https://www.youtube.com/watch?v=ziq9Fox8IVQ

Very interesting. I have made the decision to stop taking my contraceptive pill. I googled Dr Goldstein and it appears that he is very well qualified and experienced. I for one certainly fit his description of an 'early user'. I have been on hormonal birth control pills since I was 13 years old, which is virtually ALL of my reproductive life ... I'm now 35. It's worth a try. Maybe I'll get lucky!

Vulvosaurus

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Age : 48
Location : New Zealand

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Birth Control? Empty Hello and welcome!

Post  Aussie Tue Jun 28, 2011 12:46 am

Hi Vulvosaurus!

Love the name.

Firstly welcome to the forum and congratulations on coming of obc. My specialist I am seeing at the moment completely agrees with dr Goldstein about the pill theory, she was the final push to get me off it, and even if it doesn’t get rid of the pain, after reading what it actually does to your body I don't want it anyway.

I have been off for 6 days and the bleeding has stopped Smile no change in pain yet but apparently it can take up to a year. I am unsure of what Goldstein says about hormone replacement to get the levels to where they should be after coming off it. I am hoping my body will fix its hormones itself. My sex drive unfortunately has shot through the roof, it's not so fun Sad

Where did your v come from, was there a specific trigger (yeast, uti etc)?

I have recently come off all medication (lyrica, ami, pill) and there has been no increse in pain! Smile trying something hollistic for once in my life, I am no longer a zombie from the drugs.

Claire

Aussie

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Post  Vulvosaurus Tue Jun 28, 2011 6:14 am

Hey Aus,

I've been off the obc pills for 5 days now and so far I've had no change in pain either. Man ... I hope it doesn't take a whole year, but even if it did, I suppose it would be worth the wait. I was hoping my hormone levels would right themselves without any help too. I must say, I'm not exactly excited to see how my first period in over a year is going to go! I'm Kinda dreading it actually.

I don't really know what caused my Vulvodynia. I seem to have a number of 'risk factors'. I certainly do have a history of frequent thrush infections, but I also have a herniated disc in my lower back, which I hear can lead to these problems. I also have a history of severe Endometriosis which I had surgery for a couple of years ago ... there appears to be a link between Endo and Vulvodynia too. Some of the information I've read suggests a possible link between gynaecological surgery and Vulvodynia.
I've also (embarrassingly) had an anal fissure in the past for which I used a Nitroglycerin based vasodialator ointment that may have been responsible for sensitising the area. In the end, the anal fissure required surgery to correct, which may also have contributed to the problem. And finally I was recently trialed on a drug called Sinemet (Levo Dopa) for a neurological condition that I have had for several years. My problem was thought to be a benign condition called Essential Tremor, but when the Levo Dopa proved effective for my tremor symptoms the doctors changed their minds about my diagnosis. They now think it is either Early Onset Parkinsons Disease (I hope not!) or something called Dopa Responsive Dystonia (wouldn't be so bad). Anyway ... Dopamine levels in the brain can have an effet on sexual health but it remains to be seen if taking oral dopamine will help with the Vulvodynia ... So who knows?

It's great that you've managed to get off all the meds. Is it me, or do most people seem to find the traditionally prescribed Vulvodynia meds ineffective? It certainly seems that way from the reading I've done!

Smile

Vulvosaurus

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Location : New Zealand

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Post  Sarah001 Tue Jun 28, 2011 12:52 pm

Anal fissures are often connected to pelvic floor spasm, the spasm stops the anus from relaxing and stools can cause tears when there's no relaxation during a bowel movement. I also have tremors which initially I was told was Essential Tremors but turns out mine is related to my Hypermobility Syndrome and my muscles are already overworked spasming and trying to support my joints where my ligaments have failed so when I need them to do something normal like move my arm or leg they tremble like I've just done a huge workout because they're always too exhausted to do anything which made perfect sense once I got to a Rheumatologist and he explained it to me! I had to go through a physio thinking I had MS, another looking at Parkinsons and another looking at Brain Tumours as a possible cause before this easy explanation arrived though. Rolling Eyes
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Post  Aussie Fri Jul 01, 2011 2:52 am

Hi,

Sarah is right about the anal fissure. I have had this too after vulvodynia set in and used Nitroglycerin which cleared it up. Just have to be careful, going to the toilet almost always hurts me. You are like my twin! I had thrush and utis all the time prior to this.

Sarah: I found out from Alyssa Tait I have hyper mobile joints too. Although it doesnt cause tremors. It seems to be people that get this pain have several contributing factors.

It was expected I had endo too but they just put me on the pill to sort out my painful periods. (stupid docs)

Did you have the neurological symptoms prior to v? I started getting burning hands and feet a few months in, which they suggested first was anxiety due to my condition, then screening for ms then 'neuropathy' again, stupid doctors. I was on Endep for the burning hands and feet, then lyrica and endep together, which made my IC flare like crazy. I have had way way less bladder and clitoral pain since being off lyrica.

I didn't really 'manage' to get off meds. They were not doing anything for pain other than the burning hands and feet anyway. It took a nasty drug reaction for me to realize I don't want this stuff in my body. At first my hands and feet burned like hell for the first 4 days after stopping cold turkey, now they have settled down and it is annoying but not there constantly. Thank god my vulva pain has not increased since coming off everything.

9 days off the pill, no change to pain. I tried the prescribed magnesium and spip from my naturopath (2 pills every 10 mins for 2 hours prior to sex pain in the ass!) and it worked! I mean I still had slight pain at the entrance during but NO burning afterwards (yay) will keep trying it over the next few times and report back.

"Yes" water based lube and skyn by ansell condoms worked fine. No irritation. Smile

Hope you are doing well today.

Claire xx

Aussie

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Post  A2015 Thu Aug 13, 2015 2:47 pm

I wanted to post about my story to reiterate that there are DEFINITELY cases where VVS is caused by hormonal contraceptives, even when not immediately obvious.
I want to desperately encourage anyone who has VVS to come off hormonal contraceptives if possible.

In 2012, I had unprotected sex and took the morning after pill. I developed vestibule redness/soreness/itchiness. The clinic confirmed a Yeast & BV infection, explaining that this was common after sex (though I had never had any vaginal problems for years before). They also put me on the Pill (Microgynon 30). The infections cleared (tested negative) but my symptoms remained constant.

My symptoms extended beyond vestibule pain. I also had itchiness, redness & subtle inflammation of the whole vestibule (localised to this area), my vestibule skin started to tear during sex, get more inflammed & very regularly develop new infections (Yeast/Bacterial). I also had a lot of discomfort/itchiness in & around my anus.

Firstly, this made me question whether I had VVS because I didn't just have pain of the vestibule, as I kept getting infections too (now I understand that women with VVS are often simply more prone to infections & discomfort of the whole area).
Secondly, I assumed my VVS must have been caused by the infections (proliferation of nerves in the vestibule after infection), because the symptoms I had felt like they were permanent, that the skin itself was not normal anymore & seemed irreparable.

I didn't come off the Pill until mid 2013, when I had read more info about a link. I felt I should just come off it in case it might have been making anything worse.

The reality was (by my complete surprise and total elation) that within a month, my vestibule returned to completely normal and ALL other related symptoms also disappeared — the anal discomfort/itchiness & bring prone to developing infections.

I hadn't thought the Pill could be causing my VVS, because I had developed the infections before I started the Pill (I didn't consider at the time that just before I got the infections, I had taken the morning after pill which is a huge dose of progesterone). I also had no understanding of hormones & no idea how they could cause pain in a specific area of the body like this! Every doctor I asked said there was no way the Pill was relevant, which made me have little hope.

I believe there are 2 main causes for VVS — hormonal or a response to an infection. But there can be an overlap, and I didn't consider the Pill could be the cause because I kept getting the infections. But I was mistaken (and so were over 10 doctors & specialists).

I really hope this can help any women suffering.

As a side point, unfortunately, after being perfectly normal for 18 months, this year I developed infections (no hormones involved) and VVS has fully returned. I feel that my body has learned how it responded to infections when I was on the Pill, and now the nerves are irritated again = VVS Sad

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