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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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"!
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Re: 6 months constant pain

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