pudendal nerve and the spine

[helenlegs 11]

I have decided that I am just going to go in and ask my GP what she thinks is wrong with me. . . . . . . . . . I'm fairly sure she will say it is my lower back still, this was a misdiagnosis I had about 4 years ago now.
I have to say that she has been so unhelpful, if not actually obstructive with any referrals for additional help or treatments, that I can't see another reason for her attitude. (unless she just doesn't like me much )
So if she is coming from that (bad back) stand point she possibly thinks I am a malingerer because there isn't anything wrong with my back. I did give her information about PN, from this site, about 2 years ago but I don't know if she thinks that;
1. PN exists,
2. that I have it
3. PN and PS can be addressed
4. To be perfectly honest I don't even know if she read the stuff I gave her. I intend to find that out too .
Obviously she has Dr Greenslades medical notes identifying my nerve issues. I want to see what she has made of those.
IF she is still talking about my supposed back problems I hope to be able to persuade her that at least PN can't be directly from any lumbar spine problem, although I do accept that some spinal instability/problem could cause muscle issues and have a 'knock on' pelvic problem for some. I know that isn't my problem however, as a back issue I did have, was successfully resolved 10 years ago. (microdiscectomy)
After that op I worked 44+ hours per week for over 5 years without any back pain or back problems, days off work for same etc
Maybe she thinks I have some central sensitisation, due to my former back problem? but I would ask her to consider that this kind of cognitive issue wouldn't usually take a 5 year break?? . . . . . . Then reappear in my bum!
The fact that I haven't got a clue what she thinks is wrong with me, I guess is the reason I am going to see her; but yes Violet, ultimately it is a referral and help I need, that has not been forthcoming, due to her in action and obstinate behaviour.
She has had Dr G's medical reports (who after all is the expert, not her) and his latest letter saying I should be referred to Prof Robert for 2 months now and I would like to know what, if anything, she thinks to do with that information.
I hope to have a clearer picture on Wednesday .

AARGH!!!

[Jax87]

Good luck Helen! You are always so positive and helpful to all of us that I really hope you get what you need from your GP. I agree with Violet, try to focus on getting a referral out of her if that is what you really need.

It's important to educate health professionals, but sometimes you just have to get what you can from them and move on to someone who will help you. That's what I have learned so far from working with 1 GP, 3 OB/GYNs, 1 psychiatrist, 2 dermatologists, 4 pelvic floor PTs, 1 pain management doctor, 1 endocrinologist, and 1 accupuncturist on my journey. Next week I will add an orthopedic surgeon. :0 I know some PNers have seen a lot more health professionals than this, too.

I'm rooting for you!

- Jackie

[carolynm]

As in my personal case, lumbar dysfunction can ultimately cause PN issues. My lumbar spine hypo/hypermobilities caused a sacral torsion which in tun czaused damage to my SSL. Hence my pudendal nerve is entrappe3d in scar tissue at that anatomic location per Potter MRI and my symptomology. Definitely can all be related. The lumbo-sacral-pelvis all works together.

Cari

[Jackson]

Hi,

Yes, I wouldn't totally rule out lumbar involvement. Although I'm not implying this in your case Helen.

My very aware PN PT has done four years post graduate reasearch with another University researcher on the involvement of the SIJ in pudendal nerve pain. He's listed on the Pudendal Hope site.

Here's a small slice of what he has to say, "The pudendal nerve emerges from the sacral plexus (primarily S2, S3, and S4) and also gains contributions from the adjacent root of S1 and S5...pain...this may be referred either by neural convergence, by direct injury to the lumbar area, or by chronic SIJ damage impacting on L5/S1, thereby interfering with local emitting lumbar nerves.

For the full story you can do an internet search for peterdornan physiotherapy. You will see his personal testimony which led eventually led him to research pudendal pain and how he treats SIJ dysfunction.

I guess we are all different and not all of us fit the perfect textbook anatomy. In my search for a "cure" I've come across 'Nerve' specialists referring to "cross talk" between nerves that in textbook theory should not happen.

Please note, it is not my intention to question anyone's own personal experience.

Cheers Jackson

[blightcp]

In 2002 i had developed RSD in my right knee, after two surgeries i ended making up a 40 page powerpoint presenation and printed it out in color.

The third Suregon i took it to stoped read it and said "ok so we have problem here", lets see what we can do to help, he spent 90 min with me going over things.

He went trough the extra few test neccisarrry to not only fix my knee correctly but caughtthe rsd from the proproceptive nerves and the nerve blocks stopped it in time.

I still from time to time wil type a one page letter to my PCP. I think that getting a letter makes them stop and read it when they have a moment to think and are not rushing from room to room.

Id try something small at first to show you have done your homework and express thatyou are trying to explain this as accuratley as possible.

What i would not do is cite other doctors unless its part of your current therapy, wait for you Dr. to get the idea of dending you to a specialist and then present you homework of who you would like to see.

Try honey before vinegar.

[helenlegs 11]

I've been so sweet, you would think I was made of sugar. Although I do agree, the body needs to be treated holistically, no doubt about it.
However in my case after a fall on my bum, I had an egg sized lump (haematoma) in my piriformis muscle. It was there for 4-5 months, although I wasn't aware of it for at least 3 months, as that spot was too sore to 'investigate'. The piriformis muscle is quite deep and needs some pressure to get to. That spot is where my main pain still is (apart from the travelling nerve pain) and where all of the other pains stem from.
To me it seems that medics should take a bit of notice of that, but they don't. All they are interested in is my back (absolutely no nerve impingement in my spine on MRI)
Anyway I couldn't be nasty to my GP. She did look very sheepish but all I did was ask if we were on the same page with regard to my pelvic nerve entrapments. I mentioned Dr G'reenslades last letter to her, where he said I probably have PFCN and cluneal nerve issues as well as pudendal and sciatic.
It was such a lovely letter. he mentioned the trial we all seem to face with the diagnosis and treatment 'merry-go-round' as he put it and the fact that I should be referred to Prof Robert in France as Bristol was only able to address the pudendal nerve at the moment.
The team in Bristol had looked a 1T pelvic scan I'd had, and they couldn't see any nerve problems (although the radiologist in London where I'd had it done did say the right pudendal nerve had signal intensity??)
Dr G added that the Bristol teams lack of findings didn't mean a great deal, as the imaging wasn't the best (I know that now) and that the Nantes team don't hold much store by imaging anyway. They go by history and clinical examination.
He also mentioned how necessary it was that pelvic nerve patients get help because the run around that seems to go hand in hand with pudendal pain, 'saps the patients strength as much as the pain itself'. (So true)
So in that really apt letter from a consultant who knows what PN is all about,all my GP had highlighted (and she already had it highlighted on her computer screen when I walked in) was the bit about my imaging showing nothing!!!
I gave up.
Anyway she tried to refer me to a pain clinic but the computer went down, so I couldn't get booked in for the referral.
My GP is on holiday for the next 2 weeks, so I have to go back and see someone else now, next week to get booked in.
Not the show down I was thinking tbh, got absolutely nowt sorted. Still no referral, or even the chance of one it seems.
So, even though my botox injection into my piriformis (ages ago) gave me 3 good months of bum pain relief, I can't get a repeat of that on the NHS.
THEN as I was leaving, I actually turned and said, 'enjoy your holiday' to her !! sometimes I make myself sick.
The comeuppance is that I have e'd the team in Nantes to start the process, to see if I can just pay and go there.
Dr Greenslade did wonder if my problems may be too diverse and that Professor Robert would decline surgery. However, I think that my problems are so much more easy to identify than many others, as I do have this actual site of pain in the piriformis muscle. So many others have to have the actual surgery before the position of their problem can be discovered.
Take care all,
Helen

[Jackson]

Hi Helen,

I see where you are coming from in relation to your piriformis muscle. The more I read on this issue I notice the piriformis muscle being impilicated in the history of quite a few pudendal nerve cases.

Silly me, when first diagnosed with a possible pudendal issue I thought 'ok just bung the nerve block in and all will be revealed'. On reflection,I can't believe I was so naive. It never crossed my mind back then that pudendal nerve has a beginning and end; along a potentially torturous pathway negotiating muscles and ligaments-including the piriformis muscle.

I just hope that somehow you can get a breakthrough with your situation.



Cheer Jackson

[helenlegs 11]

Thanks Jackson, ditto
I am possibly off to be fixed en France. I'm sure if they dig deep enough they will suss it all out.
Cheers,
Helen

[calluna]

Hi helen - am just wondering - the NHS sends people to Belgium routinely for hip replacements that can't be done in a reasonable timeframe over here. So why on earth can the NHS not send you to France to get this sorted, or at the very least, assessed? The cost should not be any greater than having it done here - which isn't an option at the moment.

The pain clinic ought to be helpful for pain management. When you go back to get the referral for this, can you bear to ask, really clearly (I'm sure you have already, but one more shot at it) - please can I be referred to Dr Robert at Nantes, as Dr Greenslade has recommended? And if the answer is no - then, just to ask - why not?

And at that point I'd be writing to my MP quoting Dr G's letter, I can tell you.

[helenlegs 11]

I think the problem boils down to an appointment I had with a local neurosurgeon in June '08 after my fall in March. (He is a Mr. of course) I had an MRI scan and although the radiologist could see nothing, this neuro thought a spinal root injection might help me. He made it into a competition of sorts who is right, him? or this extremely accomplished radiologist?? ( a MAN thing?)
Obviously I said yes to the block, I wanted help and didn't have a clue what was wrong. It is clear from my symptoms that sciatica is probably involved although I think much of that has now found out to post femoral cutaneous. Now, I know this!!! All I knew then was I did have shooting pains some of them in my leg some in my bum, which in neuro terms = sciatica.
I had the block and went back for a follow up consultation. I told him that the shooting pains seemed to be going only to behind my knee and not always down my leg to the heel since the block. In my naivety I thought this was an improvement, thinking (daft as I was) that this may be the start of the shooting leg pains receding. Now I think back,this was just me being thick, and also putting my utter trust in these clever, clever people unaware of any pitfalls.
The shooting pains I realised sometimes went to the knee and sometimes to my heel. I must just have been having a knee episode at that time, as can still happen. Of course your awareness is heightened after a procedure and you are looking for any hopeful signs at all.
Anyway his medical notes read that the block worked!! He even noted that the shooting pain was gone.
This was far from true and totally not what I said to him. I think (stupidly) I said that he may have been right about a problem seen on my scan and the radiologist wrong, in my none sense, people pleasing way, but what did I know back then?? However a shooting pain is a shooting pain and he should not have written that it had disappeared, it hadn't and that is not what I told him. A shooting pain is still evidence that a nerve is compromised and we all know how strange nerves can be. I don't know if a shorter shooting pain can be described as an improvement, with what I have learned,I would doubt it.
All of the rest of my pain was still there, nothing had changed at all. He also wrote, ' Mrs H thinks that the problem is her SI joint', as that was what a physio had thought and the only anatomical landmark I knew that was near where the main pain was. (possibly is a problem as I'm up and rotated apparently) I was sure that something must be able to be seen there as I was still in pain. I asked but of course the imaging had been of my spine not my pelvis (WHAT????!) and we all know that it wouldn't have shown up any nerves anyway.
He offered me a spinal fusion, I declined (I knew my back wasn't the issue) He wrote this up as I don't think surgery is an option at the moment.
So my records read that I have had a diagnostic root block that worked. . . . it didn't!
and I don't need surgery. So yes there is something wrong with my back (there isn't) which doesn't warrant surgery, so there musn't be that much wrong.This has come from a respected local man who can not be wrong! So if he isn't wrong I must be. It is absolutely ridiculous. I'm medically 'stitched up like a kipper'!
I didn't even know that this report had been written up like this for 2 years. Blissfully ignorant trying to find a reason and resolution for my pain. I wrote to him when i realised the content, giving him the facts and asking him to change it but I received absolutely no reply. I think that this has been the problem throughout.
Added to that of course the fact is that no one up here believes that the piriformis muscle can cause these problems, no one really has any clue about pudendal and any pelvic problems (it is a disgrace, we know) Even the fact that I have now got a diagnosis from someone who does know what they are talking about (Dr G) my GP obviously still believes my problem is spinal, and I have Dr and diagnosis shopped, heedless to an experts opinion, hence her non cooperation.
All the PCT wanted was her to supply them with some, 'clinical reasons' why I need the referral but she couldn't think of any??? Every time she writes to the PCT or Dr G, which she did at my request, she cherry picks only the passages of text that will hinder me rather than help.
I went to see her last week to find out once and for all where she was coming from in all of this. In the mean time Dr G had sent her THE nicest letter, I tried to upload, but too big? all she picked out was that the 1T scan I'd had done previously, had been examined in Bristol and they couldn't find any conclusive evidence for piriformis surgery. Dr G then went on to say that this is not unusual and that the Nantes team don't use this imaging as they think it unhelpful.' We all know this, she now knows; this but all she had highlighted was that nothing could be seen!!!
That was the point that I gave up!!
I have an appointment with another Dr today so I will see what he has to say.What I have to say will take longer than the usual 10 mins, although if I am fighting for someone else I am good, when it is for me I go to pieces and my brain seems to shut down. I still have this inbuilt respect and idea that my needs aren't important enough to merit a challenge.
I need to get into the 'ask why' 'WHY??' I think you are very right with this tact. Now I just need to be firm and employ it. PHEW!
Thanks, calluna and sorry for the length of this. Setting it down may even have helped me. We will see this afternoon
I will be on to my MP after this as I have realised that I do need additional help with this.
Take care,
Helen