Hello All,
Having posted my story here a few weeks ago : http://www.pudendalhope.info/forum/view ... f=2&t=4980 I was so grateful to receive the responses that came back. As a result I have arranged a private consultation with Dr Greenslade in Bristol. I couldn't possibly wait the NHS waiting time which would have been the end of November, so will be seeing Dr Greenslade on the 25th July. The thing is there has been a significant flare up of my symptoms, I honestly didnt think it could get any worse but it has.Can anyone advise me as to the nature of "flare ups"?, might it calm down or is it possible that this increase in severity is here to stay, until I get diagnosed properly and treated that is!. As the years have gone by it seems to be getting worse and worse or is it that I am running out of the ability to cope with it?. The more I've read up on PN the more Iam convinced now that this is exactly what my "mystery" illness has been. Anyone who read my first post might imagine how utterly desperate I have become, 35 years of absolute torture. I am praying that Dr Greenslade will be able to positively diagnose me and this might finally be the beginning of the end. Any thoughts or words of encouragement would be hugely appreciated. I am hanging on by the skin of my teeth here.
Thank you
David
Update + Support needed re severe flare up.
Re: Update + Support needed re severe flare up.
David,
Please hang in there, you are getting close to a doctor that could diagnose you. The flare ups often happen and then go back to "the regular pain" of course that did seem bad enough. Also though it could be a worsening of the illness hard to be exact but hoping it is just the flare. Do you have any meds to hwlp or someone who can give you some to hold you until the appointment? I am so sorry you have been in pain so long without a diagnosis. There is hope if it turns out to be PN or PNE they just need to figure it out and then determine the best way to treat. Take care
Janet
Please hang in there, you are getting close to a doctor that could diagnose you. The flare ups often happen and then go back to "the regular pain" of course that did seem bad enough. Also though it could be a worsening of the illness hard to be exact but hoping it is just the flare. Do you have any meds to hwlp or someone who can give you some to hold you until the appointment? I am so sorry you have been in pain so long without a diagnosis. There is hope if it turns out to be PN or PNE they just need to figure it out and then determine the best way to treat. Take care
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helenlegs 11
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Re: Update + Support needed re severe flare up.
Hi David,
I would doubt that a flare of symptoms would be a lasting thing, especially after the long time you have suffered the symptoms. I do hope not. The way I look at it is 'the damage is done' and whatever I do to have a pain flare will always subside with time. Have you been sitting any more having to research all of this stuff perhaps?
It could even be due to actually finding more out about PN and having to think (and worry a bit more?) about it, as you have had to decide on a course of action etc. The whole thing has got to be at the fore front of your thinking more and more because of this. The brain can easily affect the way we feel pain as the brain is the organ responsible for the interpretation of pain. Plus additional worry can make muscles that bit tighter which isn't going to help one bit. Try to relax if possible, you are on the road to a possible correct diagnosis, something that has alluded you all of this time. . . waiting isn't easy BUT (and I'm not saying this lightly) having heightened symptoms may even help at the consultation. That sounds cruel, but true.
As Janet said hang on in there and I hope you get some answers soon.
I would doubt that a flare of symptoms would be a lasting thing, especially after the long time you have suffered the symptoms. I do hope not. The way I look at it is 'the damage is done' and whatever I do to have a pain flare will always subside with time. Have you been sitting any more having to research all of this stuff perhaps?
It could even be due to actually finding more out about PN and having to think (and worry a bit more?) about it, as you have had to decide on a course of action etc. The whole thing has got to be at the fore front of your thinking more and more because of this. The brain can easily affect the way we feel pain as the brain is the organ responsible for the interpretation of pain. Plus additional worry can make muscles that bit tighter which isn't going to help one bit. Try to relax if possible, you are on the road to a possible correct diagnosis, something that has alluded you all of this time. . . waiting isn't easy BUT (and I'm not saying this lightly) having heightened symptoms may even help at the consultation. That sounds cruel, but true.
As Janet said hang on in there and I hope you get some answers soon.
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.
Re: Update + Support needed re severe flare up.
Hi David,
There was a time I was hanging on by the skin of my teeth but after being treated I am doing great. So try to hang on a bit longer until you can get the right treatment. Can your general practitioner prescribe anything for you to get you through this flare-up?
Violet
There was a time I was hanging on by the skin of my teeth but after being treated I am doing great. So try to hang on a bit longer until you can get the right treatment. Can your general practitioner prescribe anything for you to get you through this flare-up?
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.