TIPNA

bindy15 · Posted: Thu Feb 25, 2010 12:30 am Post subject: Anybody there ?

Hi fellow downunderites....

Where are you all ??? It is as though this side of the world has shut down !
Always lurking,

Jude
_________________
PNE from biking, since Dec 2005
Surgery Sydney Australia, April 2008
TIR approach, Prof Vancaillie

Stephanie P · Joined: 01 Jul 2004 Posts: 89 Location: New Zealand

Hi Jude,
Yes, I'm still here, plodding along, a right royal straggler, faithful to the end! How are you?
Stephanie
_________________
Pudendal neuropathy (undiagnosed) since 1985. Worsened by an accident in 2003. PNMLT July 2004 5.7 and 8. Bilateral surgery in Nantes August 2004. No change.

catherine A · Posted: Wed Mar 17, 2010 1:40 am Post subject: Downunder

Hi Jude & Stephanie,

don't get much time to log into tipna these days. i'm still here as you know. Still battling the pain. I've actually been better than I am right now. don't know if it's the fact that I changed from Lyrica (due to cost) back to Gabapentin. I can't take too much as it makes me drowsy. Like most people, I have to work and get on with life. I take 300mg Gabapentin at night. doesn't really help with pain, but it helps me to sleep without being drowsy the following morning

. I'm still able to cope better than I did before surgery, but after 3 years I thought I'd feel much better than I do right now. I've been better.

Prof. Vancaillie suggested i have my testosterone checked which I did. It is low but my doctor didn't prescribe it for me. Pity Thierry is so far away. I might try and email him to ask if he'll send me a prescription .

I'm a bit down lately as I'm still having no luck with ongoing treatment. I can't afford to keep flying to Sydney. I still cannot get the docs to do Botox with guidance. (King Edward Memorial don't even have a CT scanner) Patients who need it are sent to Charlie's (Sir Charles Gairdner Hospital)

I saw Dr. Jennie mcCloskey (Sexual health) she referred me to Dr. Margaret Smith, almost retired gynaecologist. she prescribed an estrogen patch which helps me feel a little better but does nothing for PN pain. apart from that, she told me I don't need to see her again. Just like every other doctor, interested in the PNE story but really not interested at all.

It's difficult to think about Botox again, given what happened to you Stephanie. I've come to the conclusion that I may not get any better than where I'm at now. I swim when I feel good, but then I'm suffering more pain for up to two weeks.

Ah well, just have to keep on trying even if it takes 10 years. and if it doesn't get any better, I'll have to accept things the way they are.

My biggest problem is trying to deal with my relationship with my husband. He never gives up nagging me about how this has destroyed our lives etc. I try my best to keep up with things, but I honestly feel I might do better without his constant nagging. Don't get me wrong, I go out to the movies (lie down across 3 seats) I also go on holiday with him, but I'm really doing it for his sake so he'll stop complaining. I don't enjoy my holiday really as it's very difficult to keep up. After 5 years, not only him, but the whole family, workmates, friends etc. still have no idea how difficult this is for us.

I've tried to be such an inspiration to others but my emotions are getting the better of me these days. I seem to have gone backwards lately. A nice holiday with other PN'rs would be great. Massage, spa, relax, read a good book etc. At least we could offer compassion to one another.

I will be going on holiday again in August to a French style village resort in the highlands of Malaysia. (My husband has to compromise) He likes to go to Singapore and I can't stand the heat and humidity, so I would like to go to the highlands of Malaysia for a few days rest in the cool air.

I'd really like to say that I'm still improving but it's not the case. Although I don't regret having surgery at all. I'll post again in another 6 months or so. See where I'm at then.

Stephanie, are you still not any better? Has your fatigue improved with time?

Catherine
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PNE symptoms after vaginal hysterectomy 2004. Temporary relief from botox to Obturator Muscle. finally had TIR surgery in France June 2007. PN trapped in two places. doing better.

GregT · Joined: 23 Mar 2004 Posts: 4158 Location: Pineville, LA

catherine A · Posted: Thu Mar 18, 2010 7:39 am Post subject:

Thankyou Greg. My husband is an RN but he refuses to read anything on PN as he says it's not going to help me get better anyway. He's not always negative towards me but when he is, I'm left devastated for weeks.

I understand his frustration but a little compassion goes a long way. The daily grind of working and going to bed early takes it's toll on our social life. I'm sure we'll survive it though. Just have to try our best to retire soon. Spending more time together might help.

Catherine
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PNE symptoms after vaginal hysterectomy 2004. Temporary relief from botox to Obturator Muscle. finally had TIR surgery in France June 2007. PN trapped in two places. doing better.

tobyblack4 · Joined: 13 Mar 2010 Posts: 27 Location: Australia

I just wanted to say hello to the fellow down underites. I've only just started posting but was diagnosed with PN late last year after a few months of daily pain. Had botox with Prof. Vancille which (combined with Endep) has helped settle down a lot of the pain. He also gave me cortisone trigger-point injections two weeks ago to help rectal pain and spasms. This diagnosis explains various forms of pelvic and rectal pain I've had on and off ever since I was a child. I had other surgeries several years ago that probably wouldn't have been necessary if PN had been diagnosed then!

Catherine, I'm so sorry to hear how hard things are for you. I'm lucky that I only have to drive 3 hrs to see Thierry and Sherin. I have had pelvic pain and surgeries throughout the ten years my husband and I have been together and it gets so tiring for both of us. It's so difficult to make life about things, when the pain affects so many parts of the relationship. Maybe a relationship counsellor could help both of you communicate your feelings in a safe space?

Anyway, looking forward to chatting with some more people in our part of the world!

bindy15 · Posted: Fri Mar 19, 2010 11:08 pm Post subject:

Hi !
Welcome to the down under brigade, there are many of us out here but not many active on the forum at the moment.

Keep fighting the fight ... we are all at different stages of treatment and between us have a lot to offer, especially for moral support. This is an isolating condition and 'hanging out' with like souls is the best tonic..... and Yes, you are lucky to be only three hours away from Prof Vancaillie, if only...

All the best
Jude
_________________
PNE from biking, since Dec 2005
Surgery Sydney Australia, April 2008
TIR approach, Prof Vancaillie

guggi · Joined: 07 Mar 2006 Posts: 950 Location: calgary

Catherine, Jude, Stephanie, Leanne also,
and there are also Lynne and Nikki, all from down under and my friends,

I too am sorry to hear your dilemma, Catherine. I know what this is like. My husband basically abandoned me emotionally. He wasn't at all interested in the treatment path I sought and traveled. wasn't interested in the surgery, didn't even call at the hospital after the surgery. A tipna friend was the one who called to check on me.

We all need our tipna friends to get us through these trials. Sad, but true.

After the surgery when I developed a major infection, my husband just rolled his eyes and resented, having to take me to a walk in clinic and later hospital. It created a rift between us of which he seems to know nothing. Now, that I function normal with only some limitations, he is fine with me. Tells me he loves me. Everything is cool.

I am just telling you that so you know you are not alone in this experience. Maybe someday soon things will change, and if not, I have learned there is only one we can rely on to be there for us: the Lord. He lives and loves us and knows of our trials. He will never abandon us. Just keep that thought in your heart, Catherine. He will comfort you.

Love, Guggi
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PNE after vaginal hysterectomy in May 2005. After 3 successful nerve blocks and PNE decompression surgery with Dr. Hibner, Phoenix, September 24, 2007, approx. 50% improved. Eternally grateful to TIPNA and Dr. Hibner.

Stephanie P · Joined: 01 Jul 2004 Posts: 89 Location: New Zealand

Hi Catherine,

I'm so sorry that I've taken a while to reply: a couple of flares back to back, plus a dissertation deadline (I'm doing a PhD in Creative Writing on the language and state of being of pain) took all my attention.

My heart goes out to you during your difficult time. I feel your despair. Please send a PM if you ever need in-depth and immediate support. Only we, who know the long years of this little known condition, can properly understand the places it takes us, and the extent to which family support, and the understanding of friends is hard to sustain (which is why I decided to direct my dissertation to much misunderstood and under treated chronic pain, within a PNE framework). I also empathize with your comparative isolation from medical expertise, in Perth - the NZ contingent knows all about this!

Are you taking any meds other than neurontin? I'm back on amitriptyline, but I couldn't get by without codeine which, although not strong enough during severe flares, is better than nothing ( I can't take morphine or any of its synthetic cousins).

Have you any clues as to why you might be going backwards? Are you still having physical therapy? In my experience, periods of apparent deterioration have followed an increase in nerve compressing or irritating activities, not obvious at the time. Sometimes these periods of delayed exacerbation can be prolonged, and only overcome with rest.

I'm still constrained by the botox-prompted fatigue (thank you for asking) although it's gradually abating. I can't go out much, and am studying extra murally. Painwise, I have tolerable periods and flares. As long as I don't sit, bend or lift, I can usually keep the pain at a tolerable level. Last Friday I attended a 3 hour meeting during which I lay on a recliner for part of the time and stood at others. The recliner was very uncomfortable and I felt conspicuous and uneasy, lying there looking at the ceiling, but I guess I'll get used to it! The next day the nerve went haywire as a result of the standing - I can no longer stand for as long as I used to. As for botox, I wouldn't touch it with a barge pole again! It was administered under the GA given for the surgery I was having and I now wonder if it was CT guided. Probably not.

You've been a huge support to many people, Catherine, and you've also achieved great things in bringing recognition of PNE to Australasia. I salute you!

All the very best, Stephanie
_________________
Pudendal neuropathy (undiagnosed) since 1985. Worsened by an accident in 2003. PNMLT July 2004 5.7 and 8. Bilateral surgery in Nantes August 2004. No change.

Ezzloc · Joined: 04 Oct 2008 Posts: 10

Hi All,

I think its this time of year everybody feels down, ive been diagonised with chronic fatigue to add to my list of problems. Deep down all i could keep thinking of having a magic wand waving it and getting rid of all our pain but then i go back to reality and bingo there is my pain.

One big step ive taken is i got a job, close to home which im so happy about but its full time and i dont think i can handle full time but if it takes some of my pain away not thinking about it im going to try.

Im so glad i have all my pn friends who know what im going through and our always there for me, thanks Catherine you have played a major role in me getting a job so thankyou.

Id love to have a holiday away with my pn friends, maybe this is something we can look into?

Tobyblack, i live in Sydney too so if u ever wanted to meet up let me know or if u want to chat.

tobyblack4 · Joined: 13 Mar 2010 Posts: 27 Location: Australia

Hi Ezzloc

Have you tried contacting the Commonwalth Rehabilitation Service (CRS) or similar? They migth be able to give advice on how to get a new workplace to adapt to your needs, and make sure the employer doesn't break any laws by making it too hard for you to stay there. I used them several years ago to return to the workforce after several years of RSI.

I live in country NSW but travel to Sydney from time to time for dr appointments or to see friends and family. Maybe if we stay in touch online sometime we will catch up (as I'm sure you know, travelling with PN can be tiring!)

Leanne
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PN undiagnosed for several years. Daily pain started Sept. 2009. Diagnosed & Botox Nov. 2009, tryciclic Dec. 2009, cortisone inject. Mar 2010, Botox May 2010. Much improved, as long as avoid triggers.

GregT · Joined: 23 Mar 2004 Posts: 4158 Location: Pineville, LA

Ezzloc · Joined: 04 Oct 2008 Posts: 10

Hi Leanne,

THankyou for the details re commenwealth rehabilition i got my job through our local paper, so far so good except i had a major flare up today lucky i was busy to take my mind off it but i dont know how im going to cope doing full time. My physchologist also recommended the commenwealth rehabilition so i might give them a call.

Id love to stay in touch with you. ill pm my personal email.

Greg thanks for your advice, i hope u can find a part time job,

Erin