I Published A Book to Bring Help Awareness to PNE on Amazon

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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Sun Oct 14, 2012 4:59 pm

karyn you dont have to be rude. MY PAIN WAS CHRONIC. Thats exactly the attitude I was talking about . Do you tell all the members to basically leave the site when U get hyper sensitive. I hope u realise you"re setting a very poor example. You r limiting people to ask specific questions so that they dont get asked to leave. Yes its painful but you"re not the only one going through it. U can"t even relate to others to offer hope instead u tell them to leave due to your personal problems. Very nice. Pls dont reply. I"m trying to heal... you"re not helping.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby calluna » Sun Oct 14, 2012 6:47 pm

Hi again Leilaa.

Actually I don't understand oki doki prff? What does that mean?

So you've had this for quite a while then, the doctors don't start calling it chronic pain until someone has had it for 12 weeks or more. That's a long time to be in such pain without any effective relief, so sorry you had to cope with that.

What did your doctor say about it? - or did you see a PN specialist? - who was it that gave you your diagnosis of PN? - that's the first step of course, getting a diagnosis - but after that, why on earth did he not give you some effective pain relief?

You are quite right, it is scary when you realise this is what you've got.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby helenlegs 11 » Mon Oct 15, 2012 1:06 am

Really pleased that you have had some good pain reduction Lielaa, that's all we are all aiming for, so It's great that you have found what works for you.
I presume that you found HOPE initially when searching your shooting pain and similar nerve type symptoms?? As both you and Calluna mentioned it can be rather scary especially in the beginning, so it's good that we have your story of improvement from pelvic nerve related pain. Lets hope that continues, there is absolutely no reason why it shouldn't :)
The other good thing is that you know what does work for you. I would still get some good pelvic physiotherapy tho'. It can arm you with that little bit more information in relation to your problem and what may have caused it.
At least then if there is a re-occurrence you will know what to do.
I wouldn't take any notice of the misery and downbeat posts that you have read on here. Of course just reading the symptoms on the home page may send people into a depression spiral, that's why we have the forum to help people who may 'freak out', out ;) Thank goodness that you seem to be one of those that conservative treatments will help, and help cure I hope, so you don't need to be concerned with long term suffering.
Unfortunately many of us forum friends have had this for a while (and some with additional pelvic 'stuff'' going on) It does tend to wear you down, year in year out.
One of the things I really like about this site is the fact that people don't moan on actually ( well, moaning on is expected tbh it's the moaning on and on and . . . ;) ) In my estimation the HOPE site is more about helping people, finding answers and spreading the PN word.
It is a sad thing that many people with PN symptoms don't respond quite so well to treatment as you have done. The resulting life quality sometimes leaves a fair bit to be desired especially when any PN knowledgeable doctors are so few and far between.
Anyway, it is wonderful that you have improved so well, so quickly. Long may it continue. :D
Take care,
Helen
Last edited by helenlegs 11 on Tue Oct 16, 2012 12:33 pm, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Mon Oct 15, 2012 12:53 pm

Hey
I"m already seeing a PT (3x) According to the PT something is up with the surrounding muscles (muscle spasms) Just saw my doc... Pain is not CHRONIC anymore as he tested and checked for clues. He"s assuming its inflammation and that it will gradually ease down on its own even more in time.

Pain is even less now so I hope the doc is right.
Leilaa
 
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby helenlegs 11 » Mon Oct 15, 2012 12:57 pm

Excellent news Leilla. . . . . . That just leaves the rest of us ;) . . . .One day :)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby catherine a » Tue Oct 16, 2012 2:27 am

Good to know you're getting the help needed to sort out your pain Leila. That's exactly my point, for some people, the issue can be resolved if it's a muscular problem (pressing on the nerve) but for most people on Pudednal Hope, the pain has never resolved itself with conventional treatments.

There are different levels of pain with this condition. 1 - 10 / 10 and beyond. Some to the point of suicide. Your 2 week experience should give you an insight to what it feels like for people who have this ongoing for YEARS....20 - 30 years for some people and it's never been resolved. I do hope your pain levels out and we'd love you stay on our forums so that you can advise others of your outcome without surgery.

Bear in mind that treatments for this condition are relatively new to the medical profession. There are only a handful of specialists available worldwide who are actively researching this. Before we had HOPE...people were being referred to a Psychologist or Psychiatrist as most doctors believe the pain is in our head. It's a medical problem that's never been studied in Med. School. You're very fortunate to have a good Phsyiotherapist and doctor who are doing everything within their knowledge to help you. If you're helped long term you will have much compassion and information that would be so helpful to us here on HOPE. That's why it's called HOPE because there is always hope that one day we'll have this resolved.

All the best,

Catherine
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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