What can I expect from first appointment with specialist?

[ClareW]

I have not yet been diagnosed with PN, but feel that it is a strong possibility given my various symptoms. The plan is to get a referral from my GP to Dr Greenslade (after I have got the result of a pelvic ultrasound from the GU Clinic, which is where I was initially treated)

Assuming that I get my referral, does anybody know how long the NHS waiting time would be? What I would really like to do is to pay for the initial consultation privately and then if further investigation/treatment is needed, to be referred back to the NHS. I did hear of someone on one of the forums (sorry, forget where exactly) being refused subsequent treatment on the NHS as it was considered ongoing private treatment. Has anyone had experience of doing this please and is it easy?

Also, what would the initial appointment consist of exactly - what tests are done for example? Does anyone know if you would need to have an MRI scan before your appointment?

Many thanks and sorry for all the questions

[calluna]

Hello Clare

NHS waiting times will vary from one consultant to another. Dr Greenslade's secretary recently told me that they are currently booking appointments in May - so that's 5 months, which was a bit surprising. When I first saw Dr Greenslade back in 2011 the waiting time was only 10 weeks.

Do bear in mind that if you see a consultant first, privately, and then want to go back to the NHS for treatment then I am pretty sure that you will still have to wait in the queue at that point. You only queue-jump if you pay to have your treatment/investigations done privately as well as the initial consultation. (I've had everything through the NHS and they've looked after me very well.)

With regard to what would be involved in the initial appointment - I think that the answer has to be that 'it depends'. I can tell you what happened in my own case - the diagnosis of pudendal nerve damage was already very clear so no physical examination was needed - from what was said at the time, I gathered that this would normally have been part of the consultation. There was just lots of talking, discussion of options and routes for treatment, and finally Dr Greenslade made the decision to refer me to a surgeon.

If you need to have an MRI scan before your appointment then I'm sure you'd be informed of that when you made your booking. But I've not heard of that being required.

Hope you are doing ok at the moment, it is always particularly difficult at the beginning.

[helenlegs 11]

Hi Clare,
Dr Greenslade does see a lot of people from outside his PCT area so obviously they all have to be referred, even for a private consultation at least that is they way it had to be for me.
I was referred to him by a lovely GP who was standing in for the usual one, who was on a 6 months sick leave. I saw him privately initially (£200 , 2 years ago) This referral didn't have to go through the PCT to be accepted however but an NHS referral would have to I think.
Dr Greenslade is always very happy to treat patients on the NHS after a private consult, in fact he seems to prefer this as the NHS equipment for ultrasound injections is superior (or at least was back then)
I am possibly the person you are referring to above, in that I have never managed to get the NHS referral after the private consult. However, this has been totally down to the reticence of my GP who has not backed me at all. If she had stayed on sick leave I'm sure all would have been fine. I should have changed surgeries but hey ho. . . . The wonderful thing was that due to an admin error in Bristol I ended up going to see Dr G anyway and had treatment for a year until it was rumbled.
I haven't heard of anyone else being refused.
I think I heard something about bit being around May next year for NHS appointments with him (think it was Calluna) but that would need to be checked. Calluna got there before me, ha ha. must be posting at the same time.
I hope your journey through this is nothing like mine has been.
Take care,
Helen

[helenlegs 11]

Sorry Clare,
I didn't answer your question about what to expect, although the focus at the examination in my case was the piriformis muscle as that is where my PN stems from so as Calluna said 'it depends'.
Dr G took a detailed history of my problems and did some clinical examinations including spinal (touching toes) as mine involves sciatica too.
I hadn't brought my MRI scans for him to look at, to rule any spinal pathology in or out at the initial consultation and should have (I'd already had these done locally). He did see them later and ruled 'spinal stenosis' out at a follow up appointment but having imaging is not a requirement at all.
There was no internal or gynae examination, again he seemed to be happy with my own account of symptoms matching a PN diagnosis.
I then had steroid and botox injections into my piriformis muscles as part of my continued (non referred) NHS treatment.
Good luck
Helen

[ClareW]

Many thanks Calluna and Helen

I guess I'll just have to see how co-operative my GP is when I speak to her (fingers crossed). I have found a good PN aware physio near me, but I was wondering if it would be better to get a diagnosis before I see her, which would involve seeing Dr G sooner rather than later, so in this respect, it would be better to get a private initial consultation.

I have heard that you can choose your hospital when your GP refers you on the NHS, but that you may not be able to choose which consultant you see, so it's possible that I could wait 'til May and still not get to see Dr G (?). It's all new to me and I'm trying to find my way through the maze. The symptoms are getting worse and I'm getting more stressed about it all.

I'll just have to be patient (difficult), at least I am seeing a senior doctor at the GU clinic when I get the ultrasound results, so I will get the chance to discuss it with her too.

[calluna]

Me again...

Getting a referral has been very easy for most of us. (Helen has a rather unsupportive GP, I'm being tactful there aren't I Helen!)

I told my GP that I had discovered a consultant who had a particular interest in pudendal nerve problems (I forget the precise words I used) and please could I go and see him? He said yes straight away, he said that even if Dr Greenslade felt he couldn't help, it would be useful to have his assessment of the situation, as a specialist.

Normally yes you can choose your hospital, and normally you may not know who you will be seeing. But this isn't a normal referral, it is going out of area to see a specific person. The referral form that my GP gave me was specific to Dr Greenslade - this was one of the options he was going through before printing out the form. No point at all in a referral out of area if you don't end up seeing the consultant you want.

Re symptoms getting worse - all the basic stuff until you get a diagnosis, which I'm sure you've got already from the main website info. Avoid sitting like the plague. It is limiting but it becomes routine, honestly. I have found several cushions that help but even with them I am in trouble if I sit too long. And remember to use ice! - our first and best help, that one. Your GP is probably already prescribing meds to help with nerve pain - if you've asked for some help with pain.

And you might be interested in this too - NICE guidelines for management of neuropathic pain, quick reference guide. Helen first found it, it is excellent to have it all set out in a flowchart like this.

[helenlegs 11]

I'm sure diplomacy is your middle name Calluna Hmmmm Calluna Diplomacy Pelvicexpert-cosIvbeenthereunfortunately has a ring to it.

I must reiterate Clare that my story is not the norm. I wouldn't dream of boring you with the whole stupid tale because that's what it is, stupid! and nothing that would normally happen, so don't worry too much on that score. And because I have done it all wrong, I know the pitfalls and can easily steer you in the right direction on this one (fingers crossed everything goes through without incident however )
Even if you do see Dr Greenslade privately, I would still book the physio I think. You can learn such a lot about the anatomy and your own issues with a pelvic physio who knows their stuff. It may even give Dr G a few more pointers from an physio assessment.
let us know how things go.
Take care,
Helen

[ClareW]

Thank you again you two. I've emailed the physio and have a GP appointment booked for the 31st Dec. At least I've got a plan now, although the waiting is driving me nuts!

I'm spending most of the day in bed now(having closed my business early for Christmas). The foreign body syndrome is making me feel so gross that I'm spending a lot of the time crying but I will just have to try and be positive and get through the days 'til my next appointment...

Thank you again

[Violet M]

You sound miserable Claire -- I'm sorry. I'm sure it must seem like forever. Have you tried ice balloons internally yet? Might numb that foreign body feeling temporarily at least.

Violet

[helenlegs 11]

Hi Clare,
Sorry that you are having such a bad time with this. When you say 'foreign body syndrome' I take it that you have the feeling of something situated in your pelvic area (often rectum or vagina) This can be freakish to endure BUT the fact is that this is just the nerve playing strange tricks, as unfortunately, nerves can be strange altogether.
There is some comfort to be taken from this, there isn't a set of rules or clues with nerve problems pointing to any concrete conclusions, it's all just part of the weirdness that IS a peripheral nerve problem. Some people feel like they are sitting on glass, some stones. There are accounts of people feeling as if they have a golf ball or grapefruit (did put pineapple initially ) or some other object (mines a knife blade, but only occasionally, thankfully) It's all really weird but obviously these things are not there.
I have sciatica too and always have the feeling of a huge stone or dead wood, log in the back of my thigh. It 'grows' as the day goes on. I try to think that no one can tell that I DO have a large lump of 'whatever' in the back of my leg, it's mine and nothing to do with anyone else. I know this does sound a bit bonkers but it is my way of coping with any and all of these strange but very real 'feelings'. Even the rectal spike and feeling of a skewered labia (again not constant) are something I know I can feel but obviously don't exist except in 'nerve world'.
Not sure if any of this helps at all as I defy anyone to say that these are easy, cope-able symptoms (and then there is the rest!)
However, once you can override the' foreign object feeling', things do get a bit easier. Your nerve is just playing tricks, they can be such tricky blighters. . . . try and 'treat then with ignore' if at all possible.
Take care,
Helen