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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Lower back pain?

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Lower back pain?

Post  Sebby (Admin) on Sat Jan 29, 2011 8:56 pm


Im wondering how many of you have experienced lower back pain and if this pre dated or came on during vulvodynia

I have found that since I was a little girl I always had back problems. I would often find it ached constantly or I pulled muscles easily.

I had to be carful of my posture and lifting. I was seen by the dr for this when I was young and was also given an x ray but it didnt show anything.

I guessed that this was always how it would always be and have had to adjust my life around it.

Since having Vuvlodynia I have noticed it all the more. I think a lot of it has to do with me being unable to sit properly and maintain correct posture due to the vulvul pain.

Just today I had a tidy up and done some hovering but I often have to stop and wait for the ache to go away.

Right now my back is so sore and the only postion that is ever helpful is lying down

Give me your thoughts

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Re: Lower back pain?

Post  noni on Sun Jan 30, 2011 12:48 am

sebby hey

Yes I have a history of back troubles...specifically with scoliosis...posture problems I think.

Not sure of a correlation.
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Re: Lower back pain?

Post  [Sara] on Sun Jan 30, 2011 3:29 am

I didn't notice any lower back pain/problems until having vulvodynia. It hurts especially after sitting on a hard surface, or in a chair that has terrible lower back support. Sometimes even after standing for too long I feel it as well. It feels like a pressure point right above my butt crack, at the base of my tailbone. My physical therapist always asks me at the end of our sessions if my lower back stopped hurting (amazing, after some of the pilates exercises and external massage, it almost always feels better temporarily). Sometimes if I stand up too fast from sitting it hurts so bad I just want to fall over. My physical therapist thinks it is because of the weakness/irregularity of my pelvic floor and other muscle groups down there (since the surrounding muscles aren't working right it causes joint stress+weakness). My guess is the bike riding that caused all of this did some nerve damage on top of the muscular damage.

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Re: Lower back pain?

Post  Sarah001 on Sun Jan 30, 2011 1:45 pm

Yep, I had terrible back and pelvic joint problems for years before the vulvodynia, my therapist says my SI and back troubles have likely caused it by making the pelvic floor spasm.

Sara pain when getting up from sitting is usually SI joint trouble, especially if it's around the buttock area. SI joint misalignment or instability set the pelvic floor off because it attaches to them.

The more I read online about vulvar issues the more I find the majority of women with it have musculoskeletal issues of some kind, especially back and pelvic joint pain or bad posture, it seems to be a very common theme.
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Re: Lower back pain?

Post  Sebby (Admin) on Sun Jan 30, 2011 9:21 pm


Thats what I thought Sarah...it does seem linked to other muscle and joint disorders in that area

For so long I thought the vaginismus I had prior (and still do) to the vulvodynia was 'just' anxiety..yes part of it deff was but now I see more of an ongoing rollercoster which then led to full blown Vulvodynia..

I do believe now thinking back and reading more that my lower back pain is linked to all this.

I have also suffered terribly with period pain all my life, I feel it in the back and the pain shoots down my legs..Im now wondering it the pelvic floor has anything to do with that?
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Re: Lower back pain?

Post  tweety on Mon Jan 31, 2011 10:02 am

Hi Sebby,

My physio also treats my back every now and again to ensure that it's not stiff. She's found that women with our condition can have a stuff back and as the muscles are connected it seems to help a little.

I can't remember but a while back I used to experience this referred pain for ages and it just wouldn't go away. So my physio took a look at my back.. treated it a bit and sent me home to do some simple exercises to help flex the back... just so it wasn't stiff. After a while, I'm not sure when, my referred pain went away. Can't say it was purley from the back treatment but I had the referred pain for months and within a month of doin back treatment (alongside my usual stuff) I kinda realised it went away.

I get back pains wen it's that time of month and all... but I would say, in general, it doesn't hurt to ensure my back doesn't stiffen up with the muscle exercises... either way keeping it as limber as you can is a good thing.

Cheers

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Re: Lower back pain?

Post  Sarah001 on Mon Jan 31, 2011 1:21 pm

I've always had bad period pains in my back too and often get aching down my legs with it. Has anyone ever checked your pelvic alignmnet Sebby? It's very common for it to be out of alignment in women and as the pelvic floor attaches to the pelvis it gets spasms from misalignment. The pelvic floor also attaches to the coccyx so any coccyx pain is likely related too. The most common cause of back pain is instability due to the deep stabilisers not working or not being strong enough, around the pelvis and spine at the back are small muscles called multifidus that are supposed to work with the transversus abs and pelvic floor to stabilise the area and when they stop working or get weak the large superficial muscles of the back get tight to try and help which isn't there proper job so they get overloaded and cause pain. It's the same with the muscles in the hips and legs if your inner unit is weak they tighten up and act like stabilisers instead of mobilisers which is what they are supposed to be. That leads to trigger points and pain in those too.

The pelvic floor is often tight if the rest of the inner unit is weak as your brain picks various muscles to try and keep you upright and the pelvic floor is an obvious choice as it attaches to the pelvis. If you google online "sacroiliac instability and vulvodynia" it brings up several sites about it and one study done by Leon Chaitow about how they are all part of the same problem. It's very interesting. My therapist is convinced my vulvar pain is being caused by pelvic floor dysfunction which was originally caused by my wobbly pelvis. I had a couple of years of mild vulvar vestibulitis before it got out of hand and became unprovoked general vulvodynia and during those couple of years I noticed my pelvic floor feeling tighter and tighter. Constipation is also a classic sign of a tight pelvic floor as is urinary urgency and frequency.
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Re: Lower back pain?

Post  Sebby (Admin) on Mon Jan 31, 2011 8:17 pm


Tweety..Im deff gonna look into getting my back treated along with the pelvic floor when one of the physio's I wrote too gets back to me..failing that I will bloody complain to the hospital grrrr

Sarah - bloody hell can you be my dr!!!!! I have coccyx pain, its sore and tender sometimes to sit back! So when I have a vulval flare up and coccyx pain at the same time I wish I could levitate! I didnt have the coccyx pain until sometime after developing Vulvodynia and I did wonder if it was cos I sat back all the time to avoid pressure on my vulva?

I have also always had a weak bladder..I get up during the night to go to the loo and have to know where toilets are if i go anywhere!

Also when I was little I had such trouble with constipation! I would cry and be scared to go to the toilet...throughout my adult life I do have to be careful I dont get bunged up otherwise the pain is terrible and all over my back!

Seriously you should train in physio! lol

Im gonna chase them bloody physio's I need the whole area looked at!
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Re: Lower back pain?

Post  Sarah001 on Tue Feb 01, 2011 1:30 pm

I'd love to train in physio but my joint problems would make it impossible for me to be one so I have to be content with just being a geek on the subject! Doctors don't understand mechanical problems and the trouble they cause, they kept trying to diagnose me with pseudo sciatica whatever they thought that was when I actually have Hypermobility Syndrome and Fibromyalgia so I know how useless they are. Physio's knew what I had but none of them really understood all the workings of the pelvis and how it affects everything on the body if there's a problem and also how anything even as remotely connected as shoulders can affect the pelvis through the myofascial slings. I had no choice but to learn all this stuff so I understood what I have going on and could figure out all my own muscle imbalances.

My pelvic floor research is more recent but I have the urgency and frequency problem too, I usually get up once in the night at least and like you always want to know where the loo is! I also had alot of constipation in my teens which can actually cause pelvic floor spasms and then they make it worse so it's a self perpetuating cycle. I used to have this weird way of peeing too, a stop start method that I never took any notice of until I looked into pelvic floor hypertonicity and found it's also a symptom and potential cause. The coccyx pain you have could easily be the pelvic floor or it may be slouching back to avoid the vulva but either way you do sound classic for someone with a very tight pelvic floor. Can't wait to hear what your resting tone is when you get your home kit!

That spot on the left we talked about could be one of a few things, I've pressed into mine with a dilator while monitoring on the outside of the body what structures are there and it's either the actual pelvic floor, the sacrospinous ligament, the piriformis or where the glutes attach to the sacral border so it could be any one of those. All those are problematic on me so I can't narrow it down any more than that. When you do see a physio make sure you tell them about the constipation and urinary urgency as it tells them more about what's going on. I suspect you'll have the same as me and fast twitch fibres are ok but slow twitch have switched off.
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Just started experiencing horrible lower back pain

Post  mars215 on Thu Jan 19, 2012 4:51 am

Hi everyone...

I have been seeing a Uro since September, and my VV issues seem to be getting better. I have also been seeing a PT.. I think we've had 5 sessions so far... and my pelvic floor muscles are improving and not as tight... (i have high tone pfd)... however, i have been feeling increasing lower back pain in the past 6 weeks or so... i got off of the bc pill, and started noticing the pain during my first period after the pill... i thought it was bc of cramps... but now i feel the pain everyday. my PT also said my back was a little stiff, but as far as i know, my alignment is just fine... the only thing that really makes me feel better is going to bed at night and lying down on my stomach... for those who have also experienced this, is it something to bring up to your primary doctor? or uro? i've told my PT about it already... i don't think they'd find anything in an xray...but i feel like i need to do something about it.

the pain is right by my tail bone....it varies from a sharp, shooting pain to a numb feeling. it's really uncomfortable and i can barely sit during the day... i'm a student so this is rough for class and studying Sad

i'd appreciate any advice Smile

thanks all...

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Re: Lower back pain?

Post  Sarah001 on Thu Jan 19, 2012 5:13 pm

If it is right beside the tailbone and hampering sitting it's likely to be trigger points in the glute max or the piriformis, get your PT to have a look for trigger points from that spot out towards the hip. It won't show on scans if that's the issue and I suspect it is. If your lower back is a little tight it could indicate a weak core and releasing the pelvic floor will take more support from the pelvis and can easily make outer muscles tighter so your PT needs to address this as well as doing PF work. The pelvis can be aligned and unstable so it's not necessarily an alignment issue but ask your PT to check both those muscles for you.
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Re: Lower back pain?

Post  mars215 on Sun Jan 22, 2012 5:26 am

Hi Sarah,

Thank you so much for the feedback. I had a uro appt yesterday and told my doctor about the pain... she thinks it is related to my pelvic floor having to overcompensate for such a long time, and now that my pf is getting better, muscles in back are acting funny. she has contacted my pt about it, so hopefully it will get better...

i've also noticed that doing some gentle yoga helps with the pain.

thanks again!!!!
mars

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Re: Lower back pain?

Post  mary jane on Sun Oct 20, 2013 10:42 pm

Here as well !
After the vulvodynia diagnosis I was diagnosed with sciatica and then I developed really bad lower back pain!
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Re: Lower back pain?

Post  Sunflower82 on Mon Oct 21, 2013 7:19 am

Me too, however I had v for over 6 years. Half way through Physio that was helping I had an incident with hoovering and did some think to my lower back. Has lower back pain for a week then it went away and I started get pain down my right leg! Had a nerve block at l4 l5 helped my leg symptoms for about 4 weeks. But my v symptoms really improved when from not being able to have sex to being able to have sex with no pain! Drs can not explain it !

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Re: Lower back pain?

Post  Alana3 on Mon Oct 21, 2013 1:06 pm

Yup but it's related to endo what fun

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Re: Lower back pain?

Post  tinkerbelle2 on Sat Oct 26, 2013 1:50 pm

Recently my mid and lower back ache and my spine almost feels twisted?! Im trying to correct my posture
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Re: Lower back pain?

Post  Kathy100 on Tue Oct 29, 2013 2:12 pm

Have you seen a womens health physio yet? It'd be worth getting your posture, back and pelvis assessed to see if they are what's causing it.

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Re: Lower back pain?

Post  Alana3 on Tue Oct 29, 2013 2:50 pm

Mines from endo great fun

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Re: Lower back pain?

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