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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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6 months constant pain

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Re: 6 months constant pain

Post  Sarah001 on Sat Apr 13, 2013 8:36 pm

Hi Loulou, the steroid jabs helped for a few days but then wore off which I suppose is to be expected as the cause hasn't been removed. However I'm planning to start prolo as soon as he'll do it which is about 4 weeks time so keep those fingers crossed!! Wink I am currently off crutches however (touch wood) as my knee is a little bit better so at least I can get around for the time being without those damn sticks! Just have to keep trying and hoping!
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Re: 6 months constant pain

Post  Kate1981 on Wed Jun 05, 2013 9:52 am

Hi girls
Sorry it's been a while since I posted been in a very bad place. Been very very depressed and can't seem to get out of it. I'm still having physio 3 times a week once with the nhs guy and twice with the pudendal nerve physio lady. It's definitely been found that my nerve is trapped or irritated in a trigger point in the obturator internus muscle it seems to loosen during the physio and then it hardens again causing pain. My pelvis seemed to be holding for a while but now it's dropped forwards again. I was told to see a specialist hip physio last week as my physio lady thinks that could be involved. She did lots of different tests and she suspects I could have a labrum hip tear and an impingement so has referred me to a hip surgeon up in Leeds who I'm seeing next week. Hip problems can cause pudendal nerve pain so I'm praying this might be the bottom of it and can get sorted. I really don't know how much more of this ican stand. I need some life back now. Spent a year in my bedroom and I've never been so sad and miserable. How's your treatment sarah? Hope it's helping you. Loulou are you still doing well?

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Re: 6 months constant pain

Post  Sarah001 on Wed Jun 05, 2013 8:38 pm

I'm quite close to where you are right now to be honest. Thanks to the governments disabled bashing I'm trying to work 30 hours a week, due to my SI problems I can't sit for hardly any of that and have to stand all day which leaves my pelvic floor and vulvar pain at an all time high at the end of every day. My pelvis misaligns quicker because of this too so I worry that working will negate the prolotherapy which hasn't started to work yet anyway. I'm dislocating my left kneecap at least 3 times a week because of this too which is agony and I'm in more pain than I've ever been. I don't even have enough time to sleep enough either because of all the hours of physio I have to do after work so I'm exhausted too. Sad I'm already on Ami and Lyrica and I'm popping cocodamol like sweets every day just to not collapse in tears from the pain. I don't usually let things get on top of me but right now they are doing.

My physio is fairly certain she'll find a pudendal nerve problem with me too, I'm not even giving that thought any energy right now and I'll deal with it when I get there. Try not to worry too much about your pelvis not holding, it can take alot of work to get it there and it might be an idea to ask if they are releasing too many muscles that you actually need tight while it stabilises, alot of physios just go for every tight muscle they find and if there's an underlying instability that can be the exact wrong thing to do. Let us know what the hip specialist thinks and I'm sorry I'm not a ray of positivity right now. Over to the always helpful and positive Loulou I think......
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Re: 6 months constant pain

Post  Loulou on Fri Jun 07, 2013 11:45 pm

Aww girls its heartbreaking to hear that you are both in a bad place right now Crying or Very sad I've been there too, decorated it with my own misery and depression, so i can really empathise with you. Its understandable with what you are both going through though so first thing i would say is don't feel you have to apologise for it or beat yourself up about it. On my bad days I just had to accept that I needed to wallow in my black pit for a little while before i could get the strength to pick myself back up again. (Please just make sure that its not clinical depression that you are experiencing though - you cant deal with that on your own).

I was gonna write some stuff about how I dealt with my dark times to try and help but thought it might be a bit patronising as you are both strong women (oh yes you are) but one thing i will emphasise and recommend is do whatever you can to DESTRESS, even just a little - stress definitely makes pain worse, affects your sleep, your immune system. You don't need that working against you on top of everything else.

And a few questions for each of you:
Sarah - is the need for sleep more important right now if you're feeling low e.g. one hour less physio and one hour more sleep? Lack of sleep makes everything seem worse. And the knee dislocation sounds awful! Can they not give you a knee band or brace to help support it? Did they say the prolotherapy would take a while to work? Could you have some sick leave to give the prolotherapy time to work?

Kate - does the physio regularly realign your pelvis or did he/she do it once or twice and expect it would hold? i see my chiro every 6 weeks and she still does the realignment stuff even though she says its behaving so i'm assuming thats one of the things thats helping mine stay in place. Also did they decide your leg length discrepancy was related to your tilted pelvis rather than a true leg length discrepancy? And let us know what your hip surgeon says - from my limited knowledge it does sound like your physios might have worked through the causal chain to a potential root cause. And finally, yes I'm still doing really well and continuing to improve - 6 weeks and counting now with no pain or discomfort at all (and only minimal for a couple months prior to that). I feel guilty writing that when i know you're in pain but I don't want you to give up hope!

So stay strong girls - you CAN do this. You both seem to have clear treatment paths and are really getting to the bottom of what's causing your pain and thats a real positive (i found one of the worst, depression-inducing things in the early days was the not knowing). Its just a bitch that its a long haul but you'll get there, grit your teeth and dig in when you hit a bad patch like this. OK i'll end with something a bit naff and cheesy but one little saying i like is "no matter how long the night, dawn will surely come" - its true and i've had to remind myself of that many many times!

Sending you both lots of virtual hugs and positive vibes.
xx




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Re: 6 months constant pain

Post  Sarah001 on Sat Jun 08, 2013 2:01 pm

I knew we could count on you Loulou! I'm annoyed with myself for giving in to self-pity so yesterday decided to write a list of all the bits of physio I could do during the day. I can't skip any of it because none of it is for the vulvar pain it's all to try and minimise my widespread and frequent dislocations so it all has to be done every single day. If I do a bit at work though it will make it more likely I can get to bed earlier. I already wear a brace I call "gump" on my knee which has metal hinges in it (as if I'm not sexy enough Rolling Eyes ) but I can still dislocate with it on by simply bending my knee. I also wear lots of other supports none of which help much either but that's just the nature of the beast I've been handed. Sick leave is out of the question because I would have to go back on ESA and they would immediately refer me to the work program so they could force me to do a full time job of their choosing for no money so the job I'm doing is the lesser of two evils, seems even when you pass your medical and are declared not fit for work they can still make you do this now and no amount of dislocating joints seem to matter to them. I won't get started on that however because it makes me livid! Evil or Very Mad

The prolo could take until Xmas to even start to work so it's a very long game and of course there are no guarantees it will work either. I'm certain I'm going to find the pelvic floor work helpful if I ever get onto it, I've been seeing the right kind of physio for a year and a half and we've not even started the vulvar pain work yet which utterly frustrates me. Not to mention the 8 years of physio I've had prior to that to try and stabilise my pelvis which totally failed but I daren't even consider I'm never even going to get to the pelvic floor point. See Kate, at least you're doing it!! Laughing I'm going to be proactive like I usually am and find ways to do some of my physio during the day, I have no choice but to work so I'm just going to have to take it on the chin and I can't do anything except keep going so that's what I'm going to do.

I'm really pleased you're still doing really well Loulou and it's great that you still come on here and talk with us so thanks for that. Very Happy
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Re: 6 months constant pain

Post  Loulou on Sat Jun 08, 2013 9:43 pm

Its great to see you still have your sense of humour Sarah in spite of everything you have going on - your sexy 'gump' made me laugh lol!

Sorry to hear your work situation is so constrained - that can't help your stress levels. Hope you get something from it tho even if its just the social side. And great idea to do some physio during the day to free up extra sleep time - and maybe by spreading it out through the day rather than doing it in one go you'll get additional benefits? I'll keep my fingers crossed for your prolotherapy too - hopefully the wait will be worth it.

I'll keep popping in. You just "keep going"!
x


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Re: 6 months constant pain

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