PN escalating

Dr Thierry Vancaillie

Re: PN escalating

Postby marina » Mon Oct 13, 2014 4:54 am

Hi Dale,

I had a botox procedure done too by prof Vancaille in Sydney. He injected lots of botox in order to arrest the pudendal nerve pain. It did work beautifully for a week, and then it just wore off. Unfortunately, nobody told me about bowel and bladder incontinence after the procedure. It was just awful not being able to get to the toilet in time. It got better in time, but it took 6 months to be in control again. So be patient, incontinence will go away.

I won't do botox again, as I didn't get anything out of it, apart from that first week. And on top of it, the incontinence was just awful.

I hope this helps, Marina.
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Re: PN escalating

Postby catherine a » Fri Mar 13, 2015 11:19 am

Hi Dale and Marina,

Just wondered how you are both doing lately. I haven't logged into HOPE for some time. I'm from Perth WA and run a support group every two months here in Perth. Many of us have been treated by Prof. V and are doing really well. Unfortunately we all have to try different treatment methods before we find what works for us. Including incontinence. :oops: 10 years on I don't need any more treatments or medications. Keep at it. Don't give up. Try everything possible to recover. You're in the best place. Especially if you live in NSW.

Catherine A
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Re: PN escalating

Postby dale » Mon Mar 23, 2015 2:52 am

Hi all, I have had a bugger of a time since the botox. I have had a bit of relief up until xmas just passed only needing to catheterize probably 2-3 times per week on average. still having poor control over bowels though through out this time. since January the inability to pee has been getting worse as time goes by. on occasions it can take up to 40 mins to void the bladder naturally which is not practicable so I am currently using caths daily up to 6 times when needed. I have no sensation that I need to go still so I am voiding by time at the moment. the bowels are a nightmare wanting to go then not wanting to go it is becoming a very frustrating thing to put up with. I am very tense at the moment which causes me to wind up with pain and loose control. pain has been ramping pretty constant since about November just passed. to which i'm at the point where I have to go back and see the prof at whria to get another opinion on where to go next with this costly time consuming ailment.

So seeing the prof on the 27th this week and hopefully he might shed some light on where to go next with this. will post again once I know more.

regards dale
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Re: PN escalating

Postby Violet M » Sat Mar 28, 2015 10:05 pm

Hi Dale,

Sounds like you are pretty miserable. Hope your appointment went OK and you have some options you can pursue.

Take care,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PN escalating

Postby Pafen » Sun May 24, 2015 8:30 am

Dale,

How are things going? Any improvements?
Allan.
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