Health Organization for Pudendal Education

Hi Everyone,

I was just wanting to know if anyone can give me any prices of their diagnostic nerve blocks and pudental nerve surgery done by Professor Vancailles? I am booked in next month for a Diagnostic Nerve block and they are yet to email me costs. I am on minimum wage and struggling to pay for medical expenses...I am only in my 20's, have a mortgage to pay and live in a small town with no jobs available. My parents are wanting to help me out but it shouldn't have to come to that...

I am freaking out..all I want to do is cry. I am in a job that has already threatened to fire me 2 years prior for having time off due to this condition and another serious illness on top of it, and it is an absolute horrible environment to work in. I can't help but have the constant fear that I am going to need surgery and have to quit my job due to the long recovery period and with my work requirements I would not be able to return.

The only good thing I can say is that I'm $20,000 ahead in my mortgage repayments.

I had a pudental MRI done 2 weeks ago and the Prof wants to see me for a follow-up regarding that...I'm thinking the worst right now...he said he would only call if something were to show. So now all I can think is entrapment

If anyone could give me any advice it would be much appreciated. This condition has ruined me financially...I have spent at least $50,000 easily in 3 years trying to get answers.

Sailor_moon, I'm sorry I don't know the answer to your question about how much the treatments cost and I don't know much about the Australian health care system. Are you able to apply for disability to help support you financially as you are going through this? What about government health insurance -- is that an option?

The one thing I can say is that I am the parent of a child who was twenty-nine when he was hit by a dreadful illness and had to quit his job temporarily, and he is currently on disability. We have helped him out a lot financially but we don't ever see it as a burden and we would have felt terrible if he had not wanted to accept our help, since we were in a position to help, and wanted to help. I can understand why you wouldn't want for your parents to have to help you but I can also see it from their perspective. It sounds like they want to help. It also sounds like the job you are in isn't ideal for you anyway, so in the end, maybe you could end up with an even better job or career as a result of this. That's what happened to me. I had to take leave from my job to take care of my son and I lost my position, but I've just started back to work in an even better position than I had before.

When I was going through the worst of PNE, I had to rely on help from a lot of people. It wasn't easy because I am a very independent person. You are going through the very worst of your illness right now but chances are there are better days ahead and you will be able to get your life back and resume your career. Someday you will be able to pay it back in some way to someone else who is in need. So stay strong and keep your courage up. It sounds like you are a very responsible person staying ahead on your mortgage payments. I believe you will get through this and come out a better, stronger person.

Take care,

Violet

Thankyou for your reply violet...it actually made me cry.

I cant go on disability unfortunately. It is extremely hard to get any form of disability here in australia

My mum tells me not to worry about money but it is so hard. Neither of my parents are in the best of health and I hate the thought of taking money from them that they may need in the future.

Im not making any progress atm either. I had my first physio appointment last week and it was extremely disappointing. The physio basically put me in the too-hard basket and said she doesnt know if she can help me and doesnt want to see me again until I get my MRI results back...which is a 2 month wait til my next appointment with Prof Vancailles. He was expecting me to have 3 months of physio once a week by the time I saw him next and that is not happening. So now I'm stuck suffering while wasting even more of my life.

I feel so lost right now and its hard to cope.

I saw in a different post that you got your MRI results back so maybe that PT will reconsider now. If not, maybe you can get a second opinion. See if Peter Dornan listed under Australia on our website can refer you to someone. He is very well known in the PN community and has an excellent reputation.

I'm sorry there isn't any system to fall back on financially for you as far as disability right now. Maybe you could make a little extra money selling stuff online from home. I know one PN patient who did that very successfully. You are young and probably good at all of that online techie stuff.

Violet

Hi Sailor moon.

Do you have private health insurance? We've had a few people from WA have surgery and most of it was covered. If not, then talk to Prof. V about the public system. I'm not sure if he still treats under Medicare at Randwick. Royal Women's hospital.. the good thing about WHRIA clinic is they run their own support group too.

Catherine