What to expect in London?

[Bertie]

I am nearly two years in now.......and always said I would give it two years ago to France for the nearest I would get to a correct diagnosie, are you going to be seeing a specilist with the initial K by any chance?

If I had my time again I would have gone to France straight away for the diagnose.......Dr B will not refer you to France.....you can self refer.......I just want to see a "proper" specilist and not one who makes you feel it's in your mind, and this is your lot off you go and get on with it.

Physio made it worse for me.......yes you can self refer to Maria it's a £120.00 an hour......I had ten......would have got me to France my consult and diagnostic nerve block.

Th UK are just not interested in this condition......my now sacked GP said its the new in thing........head bang against wall.

[Alan1646]

Hmm, £120 per hour...

[Dusty_in_Hope]

Hi Holly and Bertie - thank you so much for your further replies.

Holly:

Thanks for your kind wishes. I shall take your advice to take things gently and I will definitely stick with this excellent forum. My pn-like pain is a little less today, so at least for today I'm a tiny bit optimistic; however, I've read about pn waxing and waning, and I therefore know not to get too excited.

I guess you will have almost certainly found your way, at some point, to the pelvic pain rehab website(?) An article, that I found very informative and interesting on there http://www.pelvicpainrehab.com/pelvic-p ... pn-or-pne/ (under the heading 'No Way to Know') highlights the difficulties in knowing whether there really is entrapment, so I can see exactly why you hop on and off the 'should I go for surgery?' bandwagon.

I hope PT works to help you, i.e. if you decide to try it and, as you say, put a 'tick' in that particular box. I think though it may be somewhat telling that Dr G and Dr B did not recommend PT to you (especially as I've just found out that Dr B heads up - or at least works in - a so called 'multi-disciplinary team' at the UCLH Pain Management Centre - a team that includes physiotherapists). Maybe though he will suggest it to you this time as he won't be suggesting surgery at all, not even in France.

I look forward to hearing about your consult with Dr B. I obviously hope it will go well.

Bertie:

I think if it were me, especially after 2 years of suffering, I too would go to France at least for a consult/diagnosis and then try to decide from there.

I was pleased to know that patients can self-refer to France - thanks for telling me that.

The specialist at St Mary's is indeed Mr K! (Do let me know anything that you think I should know about him and/or his team; I'll look elsewhere if I need to - I don't want to be making a big mistake.)

How is your mother after that nerve block went wrong? You said it went 'disastrously' wrong; I do hope that hasn't meant long-term extra unnecessary pain for her. Has she considered going to France too?

Maria's fees are v. expensive, aren't they? Like most things, it would be worth it if the treatments worked for us. (I can't tell you how much money I've ended up wasting in trying to get relief from my fibromyalgia over the years.)

Kind wishes to you both, Bertie and Holly.

Dusty

[Alan1646]

The "multi-disciplinary team" at the UCLH Pain Management Centre does include physiotherapists, but they don't do any hands on physiotherapy, because, they say, it doesn't help.

[Dusty_in_Hope]

Hi Alan1646

I wondered if that might be the case - thanks for enlightening me/us.

Dusty

[Holly]

Hi Dusty,

Thank you, the article is excellent. It feels as though I'm in the wrong country though if I'm after confidence in PT .

With the UCLH team not favouring PT or surgery, it will be even more interesting to see what is suggested! The more I read about neurostimulators the more I think they are not for me so I wonder what options there will be.

Thanks Alan too for your information.

Holly

[Alan1646]

Hi Dusty,

Thank you, the article is excellent. It feels as though I'm in the wrong country though if I'm after confidence in PT .

With the UCLH team not favouring PT or surgery, it will be even more interesting to see what is suggested! The more I read about neurostimulators the more I think they are not for me so I wonder what options there will be.

Thanks Alan too for your information.

Holly

There is a discussion I started somewhere on "doubtful benefits of physiotherapy"- I think under physiotherapy.
This is what UCLH offer:
http://pelvicpain-meeting.com/wp-conten ... ughlin.pdf

[Violet M]

I noticed Alan, that they use stretching and exercise instead of hands-on PT. That may be fine for some people but for me it would have been disastrous because exercise and stretching are what caused the problem in the first place. So my suggestion is to proceed with caution on that particular part of the protocol. If your PN is the result of stretching and exercise already, you may want to avoid that part of the protocol.

Violet

[Dusty_in_Hope]

A general question, which probably belongs on another thread, but does follow on from the discussion on this thread: Are there any PTs in the UK who do hands-on PT rather than exercise and stretching for pn - for instance, what does Maria Elliot in London genearally do during those £120 sessions to treat pn?

Thanks,
Dusty

[Alan1646]

I noticed Alan, that they use stretching and exercise instead of hands-on PT. That may be fine for some people but for me it would have been disastrous because exercise and stretching are what caused the problem in the first place. So my suggestion is to proceed with caution on that particular part of the protocol. If your PN is the result of stretching and exercise already, you may want to avoid that part of the protocol.

Violet

Yes, I agree Violet. I'm didn't post the link because I think that what they offer is a wonderful cure or because I think it will help everyone. Many of the various treatments I've had have worsened the pain , some for several months , until it returned to baseline. I've been to several physios in the UK who "specialise" in pelvic pain and all of them have given me some stretching exercises in addition to their hands on treatments. None of it helped.