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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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 …

Comments: 4

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.

Comments: 0

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 …

Comments: 11


First Physio - at last answers

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First Physio - at last answers

Post  Kathy100 on Mon Mar 18, 2013 4:08 pm

Had my first physio (PT) session last week and at last after months of hell, feel as if I’m starting to get some answers. This forum has been one of the things that has helped keep me going. The physio said that my stomach was permanently clenched ( I had no idea feels so normal to me!) probably going back to when I had IBS at 21 – I’m 47 now. My pelvis is permanently clenched too and in the wrong position. She found a weakness in my lower back, worse on the left hand side, loads of trigger points on my back, backside and legs! She said that there will definitely be some internal ones too & she’s going to tackle those once she’s got my back sorted out. She massaged my back and did some trigger point releasing & immediately the pain in my left leg & back has eased. She also corrected my posture & has given me some exercises to do as well as practising releasing pelvis & stomach which feels so strange. Very early days but at least it’s something to work with….

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Re: First Physio - at last answers

Post  cba321 on Mon Mar 18, 2013 7:42 pm

Hi there,

I have exactly the same thing as you. Took me a long time to get my answers too. My abdomen in tight also, probably due to the abdomen fascia (skin that surrounds all muscles) is shared with the pelvis, so they are kind of in one sack. I've done physio, chiro, light touch myofascial release, and exercise physiology. Are you hyper flexible in your lower limbs out of interest?

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Re: First Physio - at last answers

Post  Kathy100 on Tue Mar 19, 2013 2:40 pm

Hi

Thanks for your reply. I've always been told I'm very flexible at various medicals, by the physio etc but no-one has ever said hyper flexible. My hips, knees & feet also click alot!
How are you getting on? What has helped you the most?

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Re: First Physio - at last answers

Post  cba321 on Thu Mar 21, 2013 4:58 am

Hi

You can have a look at The Beighton score for hyperflexibility

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx

All of them have helped in there own way I guess, but I think the light touch myofascial massage has been the best as it does not cause any pain yet releases the muscles quite a bit. Still early days!

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Re: First Physio - at last answers

Post  Sarah001 on Thu Mar 21, 2013 2:12 pm

If you have Hypermobility issues you get diagnosed at Rheumatology and they look at your elbows, knees, spine, wrists and fingers and they expect to find elbows and knees that hyperextend so bend backwards, you likely would be able to place your palms flat on the floor without bending your knees and some people have fingers that easily bend backwards or can touch the thumb to the forearm. They also take into consideration any family history of it as it's hereditory and how long you've been in pain plus how many joints give you pain to establish if you have Hypermobility Syndrome as opposed to just being hypermobile. The only bit I can't do is my fingers don't easily bend backwards but there are lots of other bits on me that are too loose but aren't part of the test so it depends on the Rheumy as to whether they examine those.
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Re: First Physio - at last answers

Post  Kathy100 on Sat Mar 23, 2013 5:15 pm

Thanks for the link & Sarah thanks of the info. I used to be able to place hands flat on floor - I've done a lot of yoga in my time & I can bend my little fingers back 90 degrees. I can't do the others thou...

Had a flare up in the pain in my lower back / backside since Tuesday - had to take time off as too painful to sit down even with the donut cushion I use in the office...So fed-up with it all. I don't know is this because of the physio wearing off or as a result of it? or neither? I've got another appointment Wednesday so I'm hoping she'll be able to ease it....

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Re: First Physio - at last answers

Post  Sarah001 on Sat Mar 23, 2013 9:52 pm

Sounds like an SI joint issue to me. Have you got a trigger point ball to use in between sessions? I'm not sure where you're from but if it's the UK Chelston Direct do an excellent one for £10 which won't squash or break in two like a tennis ball does. I've also got some firm spikey ones that are great at getting the trigger points in the glute medius to give a bit.
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Re: First Physio - at last answers

Post  dmilly01 on Tue Mar 26, 2013 4:39 pm

Hi Kathy100
I am seeing a pain specialist on the 4th April, as i have tried amitriptyline and gabapentin and neither of them worked. My gynocologist told me there was nothing else he could do for me, so has refered me to this pain specialist instead. I am 49 and i also have ibs, endometriosis, now vulvodynia, Which i was diagnosed with early last year. I also had some blood tests done last week to check my autoimmune system, as i had follicles removed from my cervix and an erosion.
So could be something going on there? Feeling bit happier about seeing the Specialst now that i know it has helped. I read on another site that it can help up to 60% of women with vulvodynia, so heres hoping! I have also bought some anal vibrators from Ann Summers as smaller than a normal vibrator and thought might help with stretching the muscles and relaxing them in my vulva. Have you tried anything like that? Or has anyone else on here? I was going to buy those dilators that you can order, that come in different sizes. But bit expensive if dont work! i will keep you posted on how i get on with the Specialist. Hope you keep finding relief. It would be fab to have pain free sex again with my husband. He is soo patient bless hm. Take carexx

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Re: First Physio - at last answers

Post  Kathy100 on Wed Mar 27, 2013 12:43 pm

Hi Sarah, Thanks for your reply. I do have a spiky trigger point ball about the same size as a tennis ball that I got from Amazon but must admit I'm not using it every day - I'll have to get more disciplined! It certainly digs into the pain. I've got my second physio appointment this afternoon so I'll ask her about SI joints.

Hi dmilly01 - thanks for your support. I have IBS also. My doctor first tried my on amitriptyline when she was at a loss at what to try next! It did help with the burning pain but I couldn't cope with the side effects. I then saw a pain specialist & he put me on notriptyline (which is the same class of drugs as ami with fewer side effects) - this has helped a lot with the burning pain. I tried lidocaine too which worked for a couple of days but then made the burning worse than ever. I can't seem to tolerate any creams down there now. He has also referred me to the physio which I'm hoping is going to sort out my tense muscles. I haven't tried dilators yet but I've read several other posts on this site where people have used them and it's helped. Good luck with your pain specialist and let us know how you get on.

Take care xx Kathy

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Re: First Physio - at last answers

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