Confused...

[little mo]

Hello to all, I have been gathering a lot of information from this site for over a year now.
It's been three yrs and a bit that I have had my symptoms and pain. I have indured all sorts of pain control that have done everything else other than help with the pain.
I seem to always be holding on ,waiting for a procedure waiting for results of a procedure and just recently managed to get pain management which hasn't exactly helped either, I must say though that almost everyone has done their best.
I seem to keep reading that PN blocks are a waste of time am I right?
I had bilatarol pudendal nerve block not long ago and that didn't work in terms of pain relief.
As I am so fed up and worn out with this daily unrelenting pain I would go anywhere or see anyone but I would have to be sure I could be put right.
A question ....How is one tested for pn problems ? is there a scan? or just the information from the patient?
and then as I live in south east england who would be the best person to see. and are they nhs or private,? if private does anyone have an idea of the cost for a consultation, how to go about refferal and cost of surgery...I feel my doc won't back the payment for consultation as he will say I have been everywhere and seen everyone which isn't exactly true when it comes to the pudendal nerve, it seems imposible to try and tell the gp that because the cause of pain in the vagina is possibly be caused by PN it won't show up on these mri's I have had.The answer I always seem to have come back to me is that it would show up on mri if it were there, and that everything does, I seem to read differently. Do nerves heal themselves?
I didn't know about this site in the first year of suffering, I thought the burning bulge that dropped into vagina after standing for ten mins was the womb and begged to have it removed and said I wouldnt have problems after.They said I would and they were right.
Can someone help with the bombardment of questions I have just asked thanking you in advance
Little mo

[helenlegs 11]

Hi little mo,
Was the pudendal injection guided? If not it may have been a worthless but even if it was guided it may not have hit the right spot for your entrapment.
I wouldn't say these injections, if guided, are a waste of time as they can work diagnostically although not a cure.

We are finding out about more and more areas where the pudendal nerve, which travels some distance and has a few different branches to it, or other pelvic nerves can be trapped to give problems. SO if the injection hasn't targetted the right entrapment area it won't bring any relief.
I can think of entrapments diagnosed at 1. Alcocks canal, 2.sacrotuberous (ST) and sacrospinous (SS) ligaments and 3. between them, 4. the dorsal route to the clitoris, 5. the perineal branch, 6.inferior rectal nerve (doubt that would be you) 7 . sciatic notch. 8. obturator internus muscle 9. from scaring on pelvic floor. 10 ilioinguinal nerve. Thats just me thinking of people on this forum who have posted, there are probably more so it's definitely not an easy thing to determine.

On top of that doctors are only just beginning to realise that the nerves(s) can be trapped in some of these areas (dorsal route recently discovered and possibly not even thought of over here yet, dunno) All I am saying is that it would be wrong to dismiss nerve entrapment on 1 injection especially if not guided.

You are right that nerve entrapments will not show on an ordinary MRI. There is an MRN scan in Harley St, London http://www.umediagnostics.com/specialti ... l-imaging/. They have promised a 3T scanner in 2011 but I don't know if or when it is available.
The trouble with the imaging is that the scanner, softwear and radiologist have to be right to get the best results.
I had a scan done there but is was with the existing 1T scanner. It did show up my entrapment at Alcocks canal but a few other people have been dissapointed with their reports. It cost £715 btw but that may have changed.
A few have gone to Hollis Potter in New York as this is deemed to be the best. There a few very detailed reports from her on here, but the cost is an issue for me at least.

Dr Baranowski (London) may be your best bet http://www.umediagnostics.com/specialti ... l-imaging/ He has many years experience, closer for you and is private and NHS. Many people have had a private consult with him (£425 ) and then transfere to NHS for any treatment. His NHS waiting time is around 12 months it seems.
Dr Greenslade (Bristol) is the alternative. A private consult is £200 and his waiting list not so long. He has been specialising in PN for around 3 years.

Nerves do heal themselves but if something is irritating or trapping the nerve it needs treatment to allow it to heal.
Anyone can put me right on any points I have made here
Take care,
Helen

[calluna]

I agree with what helen says.

If a nerve block is done at or above the place where the problem lies, along the course of the nerve, then you will get pain relief. If the block is placed below the problem area, then you won't have experienced any pain relief.

If there is any doubt as to whether or not your problems are due to PN problems, then it would definitely be a good idea to see one of the PN consultants here in the UK and get their opinion.

Nerves do heal - I have been told variously 'anything up to 2 years' and 'anything up to 18 months'.

[Lernica]

SO if the injection hasn't targetted the right entrapment area it won't bring any relief.
I can think of entrapments diagnosed at 1. Alcocks canal, 2.sacrotuberous (ST) and sacrospinous (SS) ligaments and 3. between them, 4. the dorsal route to the clitoris, 5. the perineal branch, 6.inferior rectal nerve (doubt that would be you) 7 . sciatic notch. 8. obturator internus muscle 9. from scaring on pelvic floor. 10 ilioinguinal nerve. Thats just me thinking of people on this forum who have posted, there are probably more so it's definitely not an easy thing to determine.

Very helpful post, Helen. Thank you.

Littlemo, I hope you get the care that you need to relieve your pain soon.

[little mo]

Thank you to Helen ...you gave A simplistic easy way I can understand. I know where I'm going now and to whom.
I have a new GP and I think he would refer me to anyone as long as i gave him the reasons and benefits, I spoke to him for the first time on Monday,
and I'm not sure how I got through the twenty mins I was with him. He wasn't at all as I had expected, I think I had a vision of a Doctor with two heads one of them prepared to bite me at a moments notice. My previous GP who I had been with for 18yrs had all sorts of reason for not being able to give care to me any longer.
This new Doc had clearly not taken my file to bed with him he did seem to be in the dark with whats going on ..

I didn't take mounds of paperwork just some very important procedures due or just been done.
After I had told him of the many scans and imaging , we came to the bit about gangalion Impar injection ...the recent Transvaginal bilatarol pudendal nerve entrapment block and the pending Hypogastric plexus block, I noticed the blank look on his face, and briefly went over these procedures whilst reminding him nicely there is one person we can't afford to loose, I was extremly pleased that he had this persons name and was due to send him a letter that day.
This was the neorosurgeon who was about to give up as he waited ages for responses from my old gp.So with my new gp and him feeling quite pleased about being able to help me I feel he would refer me to whomever, at least I can explain things better for him now so thanks very much
love from little mo

[helenlegs 11]

Thats great little mo,
You will be in a whole different 'world' now with a GP who will back you. Let us know how you get on. . . . I'm sure it will all much, much easier now.
Take care,
Helen x