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Losing Hope Big Time
Wed May 09, 2012 12:08 pm by Chelsea1991
Hi, I'm 21 anyway I am losing hope in my treatment i have had at least five tablets none work i am currently on neurontin, I have been on so many stuff i started to lose hope, i dont feel nothing work and worst i feel depressed by this all, i just dont understand how nothing come work, I think i might have ic too which i got another set of tablets, i am thinking about the surgery but scared of it …
Comments: 5
Just joined - lots of questions - let's beat this thing!
Fri May 18, 2012 11:04 am by bluekangeroo
Hello everyone, I just thought I would write a few lines to say hello, I have just jumped in and started firing questions at you all which seems a bit rude. I thought I should say hello and introduce myself.
I'm 35 and have had this pain for about 10 years - ever since a run of urinary and vaginal infections way back when I was travelling in Bankok.
I finally got a diagnoses last year of …
I'm 35 and have had this pain for about 10 years - ever since a run of urinary and vaginal infections way back when I was travelling in Bankok.
I finally got a diagnoses last year of …
Comments: 1
New to this forum
Thu May 17, 2012 10:59 pm by ninjastar
Hi ladies,
It's very nice to meet other women who share this same issue. I have had vulvodynia for about 4 years now... I went off the pill about 2 years ago and it has significantly improved since then. About 6 months ago, my pain went away to almost nothing. Also, I was using lidocaine on and off and it helped a lot. Well I moved 2 months ago and that partner and I split up, so I have not had …
It's very nice to meet other women who share this same issue. I have had vulvodynia for about 4 years now... I went off the pill about 2 years ago and it has significantly improved since then. About 6 months ago, my pain went away to almost nothing. Also, I was using lidocaine on and off and it helped a lot. Well I moved 2 months ago and that partner and I split up, so I have not had …
Comments: 0
HOW I CURED MY VULVODYNIA
Fri May 04, 2012 12:44 am by ivyrose
Hello. Please read this, I want to help as many women as possible. One thing I have learned over the last 3 yrs suffering from this condition is NOT TO ACCEPT EVERYTHING YOUR DR TELLS YOU.
I posted on here a while ago claiming that I had experienced a large decrease in my provoked pain due to taking baking soda baths. Since then the pain came back with vengeance and I realised I was wrong. The …
I posted on here a while ago claiming that I had experienced a large decrease in my provoked pain due to taking baking soda baths. Since then the pain came back with vengeance and I realised I was wrong. The …
Comments: 2
Hello all feegal not a happy person atm
Tue May 15, 2012 11:21 am by Feegal
Hmm I am soo wanting to do more exercises with this new machaine I have, it helps to show me how weak or strong my pc muscles, my therapist told me to only start 5 minutes, i did try going with 15 but hurt too much, ( atm I am also bleeding I have the mirena, its just started with the bleeding not happy really,do any of you do pc exerrcise while your bleeding or you just take care and not do …
Comments: 0
Hello I am new, and am looking forward for some support
Sat May 12, 2012 12:21 pm by Feegal
Hello wow, ( I feel soo silly for years I have had this pain for soo long, originally I thought I had vaginismus) for all those years talk more soon not feeling well wil write more later sorry all. I cant wait to connect with you al and explain my story to you all how its effecting myself & my husband soo not fun thats for sure.
I feel I had vaginismus for years, but really …
I feel I had vaginismus for years, but really …
Comments: 2
Young and not sure how to handle this???
Sun May 06, 2012 6:08 am by cdt2010
Hello all! I normally do not get on these kind of things, but I don't know where else to turn. I have Lupus, which is what they say caused my vulvodynia. I have known about my vulvodynia for about six months and I have known about my Lupus for one year. I am twenty years old, and my family has no idea. I have tried everything I can think of. The gynocolgist (might not have spelled that right) did …
Comments: 0
new to the forum, newly diagnosed
Tue Apr 03, 2012 10:22 pm by It Hurts
I've had such stinging pain at the insertion of anything in this area since August 2008. I was six and a half months pregnant and went to my OBGYN immediately and said, "something's wrong". Of course, it was blamed on the pregnancy and the "blood flow" to that area. I had a C-section (age 38 when I had my first and only daughter, Caroline) and waited the 2 months before …
Comments: 5
hey girls.........................
Wed Apr 11, 2012 1:01 pm by ak1981
I'm 30 years old and I'm from Croatia, Europe. Few weeks ago doctors told me that I have V. I have it for little bit more that 1 year. I think the triger was HPV infection.
I'm reading your posts and still I don't want to belive that there is no cure for V. I can't belive that the old nice life is over. I simply don't want to belive it. Especialy now when I have finaly found the love of my life.
…
I'm reading your posts and still I don't want to belive that there is no cure for V. I can't belive that the old nice life is over. I simply don't want to belive it. Especialy now when I have finaly found the love of my life.
…
Comments: 1
Birth Control?
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Birth Control?
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?
Has anyone had an experience of birth control helping the condition?

itchyandscratchy- Posts: 36
Join date: 2011-04-11
Age: 22
Location: UK
Re: Birth Control?
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.
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- Posts: 9
Join date: 2011-06-01
Location: United Kingdom
Re: Birth Control?
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- Posts: 225
Join date: 2010-03-17
Re: Birth Control?
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- Posts: 885
Join date: 2010-06-11
Age: 38
Location: UK
Re: Birth Control?
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
XxX
admin@vulvodyniasupportforum.com

Sebby (Admin)- Admin
- Posts: 650
Join date: 2009-12-03
Age: 31
Location: London UK

Re: Birth Control?
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- Posts: 36
Join date: 2011-04-11
Age: 22
Location: UK
Re: Birth Control?
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
- 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.
drug free apart from oxytrol patch
Do you research before stopping your periods, they are natural. I made a huge mistake going on the pill.
Aussie- Posts: 199
Join date: 2011-03-15
Age: 23
Location: Queensland, Australia
Re: Birth Control?
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 ...
http://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!
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 ...
http://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- Posts: 4
Join date: 2011-01-26
Age: 36
Location: New Zealand
Hello and welcome!
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
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
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!
trying something hollistic for once in my life, I am no longer a zombie from the drugs.
Claire
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
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!
Claire
Aussie- Posts: 199
Join date: 2011-03-15
Age: 23
Location: Queensland, Australia
Re: Birth Control?
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!
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!
Vulvosaurus- Posts: 4
Join date: 2011-01-26
Age: 36
Location: New Zealand
Re: Birth Control?
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.

Sarah001- Posts: 885
Join date: 2010-06-11
Age: 38
Location: UK
Re: Birth Control?
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.
Hope you are doing well today.
Claire xx
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.
Hope you are doing well today.
Claire xx
Aussie- Posts: 199
Join date: 2011-03-15
Age: 23
Location: Queensland, Australia
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