Vulvodynia

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Re: Vulvodynia

Postby helenlegs 11 » Sun Sep 30, 2012 3:01 pm

I think that SIJD is part of my problem too greeneyes. I have been told that I have a leg length discrepancy every time I see a physio because my pelvis is misaligned, up and rotated in my case. The problem being that any treatment for this problem had absolutely no effect on my pelvic nerve pain (no beneficial effect at all in fact) I now think that my piriformis muscles are so tight, this problem needs sorting first to allow any SIJD to be righted effectively for any good length of time.
I do think tho' that because SIJD is an easy thing to determine and hopefully then treat with PT, it might not be a bad idea to get a second PT opinion?? although if you are happy enough with this particular PT's expertise fair enough.
Have you any piriformis problems? It's the muscle that stretches from sciatic notch just under the sacroiliac joint to the hip in the buttock. It is under the gluteus max muscle so a little deep and it needs a deep press to locate. Physiotherapy can help with problems and location too of course. The pudendal nerve runs just under the piriformis and this can sometimes cause PN problems.
It is sometimes (and more often) the case that piriformis problems can be caused by PN so it is a problem often trying to determine which way around it ,may be and which one started the problem. Some myofascial release and/or easy piriformis stretches can help determine if the p muscle is (1). causing or (2) adding to pelvic pain. If you have any mid buttock pain and have not had that area addressed with PT it might be a good idea to get that sorted.
Have you ever had a lumbar spinal scan? you mentioned scoliosis, was that determined by a scan or the mild curvature you mention?
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Vulvodynia

Postby greeneyes » Mon Oct 01, 2012 1:57 am

Thanks for the info. Helen. I have had several MRI's of my lumbar spine as well as one of my sacrum. I had my first scan in 1996 when I was in terrible pain and could not sit or stand for more than 5 minutes. The MRI turned up nothing other than mild arthritic changes. In 2006 my back pain became worse and I developed burning pain in my groin and vagina. The back and pelvic pain on right-sided. Another MRI turned up a bulging disk but it did not appear to be impinging on any nerves. An MRI of my sacrum turned up nothing. I have had two discograms over the years and they suggested the pain in my back is disk-related. Back in 2000 I had an SI joint injection (lidocaine and a steroid) that had no effect. In the past I had awful muscle spasms in my butt but I don't get those much anymore. I am convinced that my back and pelvic issues are related but I don't know how. I never knew I had scoliosis until I had my first bone density scan at age 40 (I have osteopenia). I told the Xray technician that her scan was faulty but she said no, my back was curved. Xrays have confirmed the curvature. I didn't know I had curvature in the lumbar spine until the Kaiser pain doc told me. It isn't as obvious as the curvature in my thoracic spine.

Helen, how did your doc figure out you have a piriformis problem? Do you have pain and tightness in your butt? Is it on one side or both?
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Re: Vulvodynia

Postby helenlegs 11 » Mon Oct 01, 2012 2:12 pm

The first person to mention piriformis to me in relation to my pain (well EVER :) ) was a physiotherapist. Everyone had only looked at SIJD and spine before that.
The physio, Suzanne, tried myofascial release on the muscle. It's mainly right side with me, although that is nerve pain wise. Both p muscles are involved the right is still the worst.
Anyway, any pressure and prodding to the muscle was painful. Suzanne couldn't feel any trigger points particularly, these show up as lentil size lumps apparently and can be massaged and smoothed away, in time. She'd had another chap who she could feel these little lumps, his myofascial release was effective. So she wasn't that sure about me initially, although the fact that the treatment was painful did point to a problem.
Unfortunately this treatment wasn't effective for me, so she progresses to acupuncture. Sometimes she couldn't even get the needles into one particular spot, (the most sore) without difficulty and getting them out again was worse. Nearly had to go home one day with some left in :lol: porcupine style. Again no improvement, unfortunately.
Thing is tho' back then I was wanting an improvement in the nerve related pain (which possibly would never come, as entrapped) I wasn't really concentrating on the muscle pain. I knew so little about what was what back then.
Suzanne progressed to acupuncture with feathering. HELL!!! I had to bite my arm and pull my hair while she was 'feathering' (pulsing the needles up and down) I gave it 2 goes and then had to admit that I couldn't stand the pain, she had no idea it had been so bad, well I had my hand stuffed in my mouth to stop crying out!
Crazy, I realise now, but if it was going to work I had to give it a go. It didn't :( .
The needles placed in the meridians (think that's what they are called) or spinal muscles didn't have this effect, so as Suzanne pointed out there must be something wrong with my piriformis muscles.
I had found a small lump in the worst side, some months after my fall. It had been too painful to investigate further before that but it had disappeared after 5-6 months. Another Dr (neurosurgeon) told me that this would probably have been a haematoma from the fall (he was correct it seems) but he didn't realise the significance of the lump. He diagnosed me with degenerative disc disease. Like you, I have no nerve impingement in my spine.
It has to be mentioned that I did have S1/L5 microdiscectomy 5 years before my fall so everyone just presumed that this new problem was back related from the onset. The S1/L5 was 10 years ago now and was an absolute lifesaving success. I had some numbness (toes and calf) after it but no pain. (5 years of NO pain, can you believe that!!)
So they were all looking in the wrong place in the beginning, and because my spine is fine (MRI) they probably thought I was trying to make it worse than it should be, after all imaging showed nothing so bad to be responsible. I am SO not that sort of person anyway.
Sorry, this has turned into 'my tale' but I just wanted to show how the neurosurgeons (clever, clever people) do get it wrong so obviously we do too.
I would truly have been convinced by this argument too, if I hadn't had back pain before. I knew this was not the same. . . .I can touch my toes for instance, and do all of the side and back flexation 'tests', something that would be impossible with my previous disc herniation (apparently it was rather large)

If I were you I would definitely get this muscle checked with a physiotherapist.
Sometimes a nerve can run through the muscle (sciatic) so any tightness/scar tissue/spasm can easily cause sciatica, which is usually only thought of as a spinal issue (still, unfortunately) The pudendal, post femoral cutaneous, mid and inferior cluneal, superior and inferior gluteal nerves also run in very close proximity. There may even be another one or two nerves I have missed, just goes to show that Dr's should not discount this muscle in their diagnosis. But they do!

I was able to see Dr Filler in London and he looked at some pelvic scans I'd had taken and could see immediately that my p muscles are asymmetrical, which is a classic sign of piriformis syndrome, although he classed mine as 'a complex variant of a piriformis syndrome'.
This still wasn't good enough for the medics over here. . . an AMERICAN!! but when I eventually did get to find out about Dr Greenslade and saw him. He completely agreed with Dr Filler, although through the year+ treatment I've had with him he has added a couple of extra nerves to my diagnosis due to my pain and numbness 'presentation'.
I am possibly a little more unusual than many here although there are still a few of us here with similar piriformis related problems.
All I'm saying is get the damned thing checked out ;) elimination may help take you in a different, correct direction and if it is problematic it is something to work on for treatment. The only thing to remember is that the piriformis can be a secondary problem and not a primary one too. Just to confuse issues further.
Sorry so L. . . . O. . . . . . N. . . . . . . . . . . . G!!!
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Vulvodynia

Postby Karyn » Mon Oct 01, 2012 3:42 pm

helenlegs 11 wrote:I do think tho' that because SIJD is an easy thing to determine and hopefully then treat with PT, it might not be a bad idea to get a second PT opinion?? although if you are happy enough with this particular PT's expertise fair enough.

Based on information found on the internet; it certainly does sound easy to correct with manual adjustments via PT, stretches, and/or Chiropractor. I did all of these things for years with no improvements. I think it's possible that SIJD can be corrected if appropriately treated in it's acute stages. It's been my experience that once it becomes a chronic condition, the above mentioned modalities may not be as effective. I'm not sure the medical community fully understands the serious consequences of a torqued sacrum and SIJD and how it relates not only to the pelvis and it's structures but the spine, as well.
greeneyes wrote:I have scoliosis in both my thoracic and lumbar spine but the curvature is mild. I've wondered if that could be part of my problem but nobody has suggested that.


http://www.sidysfunction.com/common-associated-conditions.php
http://www.massagetoday.com/mpacms/mt/article.php?id=13628

Best,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Vulvodynia

Postby janetm2 » Tue Oct 02, 2012 11:18 pm

Hi all,
I am working on the SIJD I got from my decompression surgery last year. Tomorrow I got to double dose chiropracter then acupuncture. I am also doing AB exercises to strengthen them to take up for the lost ligament. I bought an SI belt to wear when driving and cooking since those seem to be the most twisting. Maybe I will be able to get this in place and staying thatway! Wishing less pain and better days for all. PT will be leess but I see heer on Monday and hopefully add to the other work.
Jalnet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: Vulvodynia

Postby helenlegs 11 » Thu Oct 04, 2012 1:57 am

Did you notice a distinct difference with pelvic stability after the decompression surgery Janet? Sorry if you have already posted on this.
And does the belt help pain wise? The complexities of the pelvis can sometimes make one pain difficult to differentiate from another, but I would imagine that as the SI belt is specifically designed to stabilise and hold the pelvis in place, any pain relief has got to be from a ligament issue?? Unless there was some SIJD (as is often the case) before hand. Are you hypermobile at all?
A friend of mine had pelvic instability after having her 3rd child and used the SI belt to great effect. I realise the SIJD onset is very different but she found wearing the belt extremely helpful with regard to her pain through lax ligaments. I wondered, do you notice a similar therapeutic effect or are you using it more to try and guard against problems that can arise from twisting?
Think you will be ready for an easier few days after the intensive work out and work up you mention. Hope you manage 'feet up' at some stage ;)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Vulvodynia

Postby janetm2 » Fri Oct 05, 2012 1:38 am

Helen,
yes the SIJD is from the surgery because I had no problems like that before. I am using the belt to avoid twisting but think it helps with pain as well. The chiro and acupuncture together is helping but more so maybe the new ointment that is a compound of amitriptylene, gabapentin and a few other drugs. I started using it yesterday.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: Vulvodynia

Postby greeneyes » Sat Oct 06, 2012 1:50 am

I will ask the physical therapist if she thinks the piriformis muscle could be involved. I do have a history of spasms in my backside.

The pain guy I am seeing now asked me at my first visit if I wanted to try acupuncture. I said no as I had tried it one time years ago and did not like the needles. After hearing your experience with acupuncture, Helen, I am glad I declined! That "feathering thing" must have been horrible.

It seems there are a number of people using this site that have back problems as well as pelvic pain. I thought my situation was unique but I have discovered it is not.

Greeneyes
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Re: Vulvodynia

Postby helenlegs 11 » Sat Oct 06, 2012 10:20 am

I'm not good with needles either greeneyes. I HAVE to look away and think of something else, although I'm not sure who would 'like' tbh.
I wouldn't be totally put off by my experience however. Mine was painful because of the degree of spasm and scar tissue in that muscle. Others may benefit, there are many who have benefited from acupuncture. Actually the needles placed in my spinal muscles worked a treat :) The thing with acupuncture in those particular areas is that unless you are a contortionist you won't SEE them.
I know some people on here do use this treatment to good effect, I think I was just trying to point out that the piriformis muscle can be a big player in the pelvic pain problem.
Take care,
Helen
Last edited by helenlegs 11 on Wed Oct 17, 2012 11:03 pm, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Vulvodynia

Postby janetrossi » Wed Oct 17, 2012 10:36 pm

HELLO Helen, firts tank's for your responses.
Today I spoke with a girl just returned from the Potter and I realized that I must do before the neurography.
The best neurography is make 'to Filler, from Italy and I can go to London.
You're English and you did it in London, but my problem is that j don't want to make even the diagnostic block.
I absolutely DO NOT, I am so 'because the blocks have ruined me! ( DOTTOR VINCENTI IN PADOVA , ITALY HAVE RUINED ME !!)
Is possible to make only neurography?
I've read some things HORRIBLE about FILLER, ON THE 90% of him patients said horrible things ..... what do I think?
All is' the diagnosis of piriformis?

Does anyone know if others doctors do neurography well?
You, personally, what do you think about Filler, and you know how often you come to London?

It is true that you can do the MRI and the neurography and in short time whitout problems ?

Sorry for my English and my many questions ......
All the best .... (not 'the best greeting for us ....) ciao Janet
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