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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: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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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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