Health Organization for Pudendal Education

Hi everyone:

I have been suffering with pudendal neuralgia for 8 years. I feel extreme pain mostly in my urethra, sometimes radiating throughout my pelvis into my buttocks and upper legs. I have been taking duloxetine long term and have had numerous nerve blocks in the past which have only had short-lived/temporary success. I am virtually incapable of continuing my job even though I try my very best to.

I am under Dr Baranowski and had a trial early last year (12 months ago or so) of the neurostimulator which was successful. This was the last time I saw Dr B. I am now on the waiting list to see him again, however, I am not sure what to expect. I understand that the whole thing is a multi-discliplinary approach - will this appointment just be to discuss further stuff I have to do before having the stimulator e.g. psychologists etc, or will it be to discuss actually having the neurostimulator?

I am becoming desperate to know how much longer I have to wait - after having a successful trial early last year, I had become hopeful of a future. But a year of waiting for an appointment where I don't even know whether it will actually represent being close to having the machine fitted has caused me to become very depressed and lack hope.

Can anyone give me any idea of what to expect of the coming months?

Thank you everyone in advance.

Hi Rayflight,

From my experience at the national some years ago Iwould reccommend you contact Dr B.s specialist nurse. She should be able to answer you,re questions.

If you do not have contact details let me know Imay still have her details assuming its the same person, I can pm them to you.

Kind regards,

Molly

Hi rayoflight, Welcome.
I'm still shaking my head. How on earth can they trial something that is proven to be helpful with pain and then NOT GIVE IT TO YOU?? I don't understand!
That is cruel. I'm so sorry, I have not seen the team in London so I wouldn't know what to expect from them as a next stage for you. I would definitely ring them and ask as Molly has suggested.
Good luck
Helen

Hi rayoflight

I agree totally with Helen if you have already had a successful trial then you should already be on a waiting list. Do you know where the stimulator was planned to be implanted? I think you need to get on the phone and see what's happening.
The psychological and other per stimulator tests are done prior to having a trial.....have you not had this stage completed?

I hope with some firm words on your part that you will get some answers and soon

I would suggest checking with the Appointments Co-ordinator. Letters do go astray.

Hi ray of light
I am under the very charming mr baranofski!
At first I was paying privately , but after my first and second set of pudendal blocks(I had a genourous mum) I had to go back to the n.h.s.
Now the promise of a neurotransmitter if things got tough! Have not been offered again?? I am lucky that I can stand to do my job(hair stylist/ artist) I manage my pain with meds(tramadol works in flare ups) but my plan is that if??? I became unable to!! I will bombard his securaty both private ( I must have spent about eight thousand pounds) and n.h.s securaty and make this Demi god of pudendal nerve knolage! Come up with the goods!
Sorry I'm ranting because I'm in a flare up!(I'm a pussycat really)
Anne smith

Thank you very much everyone for your replies. Haven't heard anything regarding an appointment despite making a nuisance of myself Still waiting....

Ugh! That's all I ever seem to do too Ray . . . . .wait. . . . and wait. . . .and
I started to tell my latest MRI,nerve conduction,no MRI needed?, lost appointment, different hospital tale here and just got SO bored by the nonsense of it, I decided not to bother, It probably sufficient saying I know exactly what you are going through and I can't believe it either.
My tale ends with a secretary telling me 2 days ago that I may not need the MRI scan (fine, I didn't think I did need one either as I have a pelvic nerve entrapment diagnosis)
I got a letter today (hooray) telling me my MRI will be on the 14th Feb???
Hope that you get somewhere soon.
Helen