Help In Scotland ?

[joan.motherhen]

Is there any HELP for us in Scotland ?? I have been battling/struggling to get HELP for 2 years now.
GP's don't know about this PN . The waiting time to get appt with pain clinic is MONTHS.
Everyone only mentions Dr G in Bristol which is of no help up in the North.
I cannot be the only sufferer here but feel so alone with this Pain .????
If Dr G is the only option , can anyone tell me how I get to see him? Will my GP refer me or will it have to s
be private ?
ANYONE out there ??? Thank you.

[Rosemary]

Just to say Hi Joan

There have been some recent postings by ladies who have seen a Dr De Mello in Manchester - would he be easier for you to reach ?

I guess you can only ask your Gp about a referral - print off some details about Dr G/De Mello to show him/her. I did this to convince my Gp to send Dr G my details that he requested for my private appointment with him. I went privately as i felt it was the only way to get a nerve problem recognised by someone - i also didn't want any battle with my Gp over a referral.

Hope someone from Scotland can answer you soon - i am down south.

Rosemary x

[helenlegs 11]

Hi Joan, welcome .

There is a very good PN aware physio in Scotland that I have heard about although have no personal experience. Many of us here had a 'diagnosis' from a physio or at least a pointer in the right direction before a doctor confirmed that diagnosis.
William Taylor
Taylor Physiotherapy Sports Injury Clinic
10 Comely Bank Avenue
EDINBURGH
Edinburgh
Scotland
EH4 1EN
Tel: 0131 332 8698
Email: reception@taylorphysiotherapy.com

There are also;
Karen Edwards
Nurse Urology Unit Western General Hospital
Crewe Road South, Edinburgh
Tel 0131 5371874
AND
Karen Edwards Taylor Physiotherapy Sports Injury Clinic
10 Comely Bank Avenue
Edinburgh Scotland EH4 1EN
Tel: 0131 332 8698
Email: reception@taylorphysiotherapy.com

Janice Falconer
Senior One Physiotherapist Stirling Royal Infirmary
Livilands Road Stirling
Tel: 01786 434061
AND
Physio Focus Bannockburn
Tel 01786 480048
janicefalconer@googlemail.com.

Kate Lough
Pilates Instructor (Body Control) Western Infirmary
Dumbarton Rd Glasgow
Tel: 0141 211 2445
Email: kate.lough@ggc.scot.nhs.uk

I don't know where you are with any treatment of course but everyone should try physiotherapy. The PN problem is often due to pelvic floor muscles irritating the nerve which physio can help enormously. We did have a guy from the highlands at one stage here but haven't heard from him for ages.
I live in Northumberland (but not that far from Newcastle) so I can understand your frustration. If it is anything like here the medics are in almost total pelvic nerve pain denial never mind managing to get any treatment.
I have seen Dr Greenslade in Bristol and just used to fly down. Only trouble was there was a whole lot of hanging about (although Bristol's nice) before getting home again However the flight was only 1 hour. I went privately initially as the wait to see him was 6 months on the NHS (no clue what it is now) I had already waited 2 years so paid (£200) I still needed?? a referral from my GP for the private appointment, but had a lovely (stand in) GP back then, so that wasn't an issue.
There is Dr de Mello in Manchester as Rosemary mentioned and Dr's Baranowski and Curren in London too (all on the home pages here)
I have just been diagnosed with pelvic nerve entrapments locally however (only 5 years later) through a nerve conduction test (sciatic tho') and repeat MRI of my spine, which ruled any nerve impingement out there. This was through a pain consultant in Northumberland but she doesn't have anywhere to send me to now (so far anyway) because of money and the lack of pelvic pain pathways set up in the UK. The later problem is set to change however.
How did your problem start?
Take care,
Helen

[ClareW]

Hi Joan,

I've seen Dr Greenslade in Bristol early this year. I went to see him privately for the first appointment (£250) and then transferred to the NHS. The NHS waiting time is about 12 weeks now I think. You do need a referral from your GP to go and see him privately.

I was really worried about approaching my GP to try and get a private referral, but she was fine about it. I printed off all the information from this site and took it to my appointment with her. I approached it by putting the information on the table and saying 'I've found out about this condition on the internet (guilty smile), what do you think? I had highlighted the corresponding symptoms on the printout and they seemed to fit so she said 'Yes'.

Dr Greenslade sends a written report to your GP after your consultation and once they have received this, it makes it easier to get what you want! I mentioned to Dr G that I wanted to transfer to the NHS and he mentioned this on the report, so I had no problem getting my GP to refer me to him as a named NHS consultant. My GP also prescribed the drugs that Dr G had suggested.

I live in the North of England and Bristol seems a hideously long way away, but it was only about 2.5 hours on the train. I don't know where you live in Scotland, but (maybe) it might not take as long to get there as you think (she says hopefully).

Good luck anyway x

[joan.motherhen]

Thank you all for replying and with the helpfull advise etc.
After MONTHS of waiting I went to NHS Pain clinic yesterday . Not a lot of help .
Keep on with Gabapentin
Did have one PN Physio who has gone to Dubia !!
So I will go and see One in Edinburgh as suggested here. Thank you !
I just cannot believe there are not more women joining this 'helpline' ! Come on Scottish lassies
we need to make our voices heard , so join us sooner than later. We need HELP.

[nchimunya]

Hi Joan

Interested to read your post. Am in Scotland and interested to know how you have been getting on. I saw my consultant today who suggested exploring the pn route after 4 years of terrible pain and discomfort which gets progressively worse. Am waiting an MRI and then depending on results a PN block to see if that helps. I have seen Bill Taylor in Edinburgh last year for related problems but at the time mainly lower back / pelvic SI joint dysfunction. He is very good, seems to be very knowledgeable able pelvic problems and trained internationally on womans issues.

I have been searching for a diagnosis to my problems now for a long time. I had a 4th degree tear during childbirth 9 years ago and now suffer greatly. Had many consultations with various people in Scotland with very little / slow progress.

K

[Lenny33]

Hi Joan, have just seen your mail. Can I offer my opinion & a suggestion. Stay away from bristol and go with bill Taylor in Edinburgh. A top guy who knows his stuff, is passionate about pelvic floor, has trained with the best and is approachable. The likelihood of going to Bristol is at some point you will be referred for surgery from greenslade to his colleague mr dixon. My experience of mr dixon was not positive. The two of them perform a lot of surgery together ( greenslade is dixons anesthetist)

[joan.motherhen]

meant to say Thank you.. I have had a fairly good spell but pain now back with vengeance so will make an appt with the Physio now. does anyone think back problems are related to PN ?

[Rosemary]

Just in case you missed it (gabapentin fogs me on stuff) - this is one recent thread http://www.pudendalhope.info/forum/view ... =48&t=5358.

Rosemary

[Violet M]

does anyone think back problems are related to PN ?

They can be-- especially lower back/sacral area. What type of back problems are you having?

Violet