Please can anyone recommend any pelvic neurologist specialists?? Also have u heard of a MRN Scan available in UK??

[JessH]

Hi, I havent been on here for a while. I am still suffering with excruciating chronic pelvic pain in my right groin area and the pain travels round to my hip. I have had countless tests, X-rays, MRI scans etc all of which have come back clear. My pain consultant is still thinking I have an inflamed Addictor Tendonittis which is usually treated with steroid injections however I have had several of these now and they seem to make things worse. They definitely do not help my pain which my consultant said he has not seen before...

I have regular physio & she has been treating my sacroiliac joint as she thinks it could be the cause. She has also found my pelvis to be not level so has tried manual manipulation & clicking it back into place. None of this has helped.

I really am at my wits end. I have had this pain for oner 4 1/2 years now and it has been a constant pain for the last 3 years. I have to use crutches to walk which with 3 young children I am finding really hard to deal with. I am on countless medications but nothing seems to help me. I've also tried hydrotherapy & acupuncture which hasn't helped.

I have heard about an MRN scan which is like an MRI but looks at your nerves It is available in new York but I can't seem to find anything about it in uk ( if I have to go up new York then I will!). I have even spoken to a radiologist at the London Neurological Hospital but he didn't know about it.

Sorry to go on but just wanted to give a picture of my history.

I am really keen to see a neurologist who specialises in pelvic pain if anyone can kindly recommend anyone?? I will travel anywhere of I have to.

Thank you xx

[PPSN_JudyB Pelvic Pain Support Netwo]

There is someone in Harley Street in private practice who has an interest in this. There is a 3T MRI scanner in Cardiff which is the most advanced that is in use clinically in this country. It is part of the Harley Street group. Have you got private health insurance ? if not the cost is several hundred pounds. ( 7T scanners are the most advanced but they are only used for research )

The usefulness of MRN is questionable. Patients can pay a lot of money to no avail.

[JessH]

Hi Judy,

Thank you for replying to me. I have been looking at the clinics available on Harley Street and actually found a website of a pelvic pain clinic however they are only contactable by email. I have sent them several but had no reply and they are not on the Harley street directory.

I don't have private health insurance but if it was worth my while havin one of these scans then I would definitely pay. I am going to visit a neurologist first and get a second opinion but I will definitely look into the clinic in Cardiff.

Do you know of any neurologists who specialise in the pelvic area?

Thank you again.

Jess xx

[PPSN_JudyB Pelvic Pain Support Netwo in reply to JessH]

Jess,

Neurologists in the UK focus on brain disorders such as epilepsy, Alzheimers etc and they don't see patients like us.

In fact those with pelvic pain generally in other countries don't get to see neurologists either.

[jacquieb Volunteer]

Hi Jess, sounds like your problems are definately joint related. I don't know too much about MRN's in as much as they are always bring out new machines which are bigger and better so to speak. However, I had one done around two years ago in Harley Street, this was done on private insurance, cost over £600.00 otherwise. I have PNE issues and I wanted to see if the MRN could locate any entrapment or anything really to see what was causing my pain. They inject a dye into your arm half way thru the procedure. However, I came away disappointed as nothing nerve wiseshowed up. Well, it did but not what i was expecting. A large 6cm ovarian cyst and two large Tarlov cysts were found, which still sti there to this day. My OC is being closely monitored and the TC's, well, that's another story. In my opinion, steroid injections have made my condition worse. Interesting enough Jess, I am looking at SIJD as many people like myself have this problem without realising it, misalighment of the pelvis, thus c ausing issues with the nerves and compression. Apparently you need to lookl for a classical oestopath or c/practor, and found one on the internet yesterday who seems to knows his stuff! I will let you know how it turns out/ or not as the case might be. I wouldn't have thought your PT would be qualified to be honest so suggest you look more in that direction. I am also waiting a call from another o/path too that has been recommended. All the other treatments you mentioned we have all had done, but you need something more than that. I hope this helps.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to jacquieb]

Hi Jacquie,

You're right about SIJD. It was a physio who sussed this out with me and she's brilliant at treating it and realigning the pelvis. It takes 2 or 3 sessions and exercises which I then don't keep up till it happens again. If I see one of her colleagues in the same practice, they don't have the same success.

Good luck with the O/path, keep us posted !

[Greengirl]

Hi jess I have very similar symptoms to you and seen all the same specialists you listed, so would love to know the outcome of any tests you have, and will let you know if I have any joy with mine. I am going to try a neurologist as I've mainly been seeing spinal consultants. I've read that some neurologists are M.D.s and some are osteopaths which is confusing, as it implies they have different knowledge. My pain prevents me from sitting for more than a few minutes, and I've started to limp recently. It also radiates up to my side to my shoulder. It used to just be my groin, hip and back that hurt. It all stems from the groin primarily. Do you have the same issues with sitting, I'd be really interested to know? Years ago I saw a neurologist who wasn't a doctor, who said he thought my pain was likely joint related. I am slightly hypermobile but been tested for this and don't really fit the criteria for this being the problem. I am convinced it's a nerve issue, perhaps trapped by a joint or something, but have no clue as to what specialists to see. X

[Lilac1927]

There is a scan in London, google london neurography the have a MRN scan

[She1]

This is really helpful but can they detect pudendal nerve entrapment as the vessels there are tiny and surely any dye injected only shows vascular abnormalities.?

[She1]

How about Osteopath / chiropractor. Look up Erjan Mustafa in Cardiff. Apparently people travel from all round the world to him. Just a thought.