Joyh
All though you will not be feeling much of that at the moment !!we so feel your frustration. You have found the right site whatever your droughts and had the best advice! I have been of the radar for the last few days as I have engaged in a little pleasure? Yes it is possible. After a very bad flare up( I blamed it on the resent extension we've had built) I have been racing , ladies day to be precise ( I do come from the home of the st ledger) the consumption of champagne fed slowly by drip( it was a long day) worked wonders
Your gp is stearing you well "off piste" so to speak and sending you down a " black run"(god I'm lyrical) today , must be the hang over, to certain time wasting confusion. Do be firm and nicely present him with the knowledge you have been given( I tend to massage their ego by making them aware that only the most informed open minded and forward thinking gps have knowledge of this rare and often egnored infliction .
Lastly and I'm sure Helen will agree with me as I know like me she gets relief from tramadol! That yes it knocks you sidwards to begin with but used responsibly, you do begin to tolorate it and it is a good tool for a lot of us when in flare up
Anne smith
Newbie
-
Anne smith
- Posts: 72
- Joined: Wed Feb 08, 2012 12:44 pm
Re: Newbie
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Re: Newbie
Hello again Joy - yay result indeed!
Your new GP sounds lovely, very supportive, just what you need.
I really agree with what she said about sorting it sooner rather than later. And also excellent that you are able to go back with the NHS, that's more like it.
With regard to acupuncture, I had a course of this thru the NHS at the pain clinic. It did help me a bit for immediate pain relief but there was no lasting improvement. However the nurse was very helpful and showed me how to use press needles and acupressure so that I could continue this for myself, and indeed I do still use the acupressure points quite regularly.
Your new GP sounds lovely, very supportive, just what you need.
I really agree with what she said about sorting it sooner rather than later. And also excellent that you are able to go back with the NHS, that's more like it.With regard to acupuncture, I had a course of this thru the NHS at the pain clinic. It did help me a bit for immediate pain relief but there was no lasting improvement. However the nurse was very helpful and showed me how to use press needles and acupressure so that I could continue this for myself, and indeed I do still use the acupressure points quite regularly.
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Newbie
Hi Joy,
You are definitely on to a winner with this lovely lady GP. She sounds magnificent. . . swap you! NO? well, can't blame you one bit
See I wos worried over nothing
Welcome rea,
I guess you have got the gist of this thread. A good doctor (primary? in the states?) is all important. Do as Janet has suggested and print off the letter to medical professionals http://www.pudendalhope.info/forum/view ... profession
and perhaps the list of symptoms on the home page. Tick off the the symptoms that are relevant to you, take it in and follow the script that calluna has suggested. "This type of pain, burning, shooting etc is neuropathic (or to do with nerves) right? and it is in the distribution of the pudendal nerve?"etc.
It does seem as if your doctor does need an introduction to PN. Hopefully he or she will be amenable to this. If not, and they are still sceptical, there is only one choice in my opinion ; Ditch them! I have learned the hard way that trying to get someone on side can prove impossible. Don't waste your time trying as I have done. Move on.
Doctors. . . . . there are tons of them to choose from!!
Hope you find someone who understands, or that the GP you are currently with can get to grips with the concept of PN and start to help you rea.
Let us know how it goes.
take care,
Helen
You are definitely on to a winner with this lovely lady GP. She sounds magnificent. . . swap you! NO? well, can't blame you one bit
See I wos worried over nothing Welcome rea,
I guess you have got the gist of this thread. A good doctor (primary? in the states?) is all important. Do as Janet has suggested and print off the letter to medical professionals http://www.pudendalhope.info/forum/view ... profession
and perhaps the list of symptoms on the home page. Tick off the the symptoms that are relevant to you, take it in and follow the script that calluna has suggested. "This type of pain, burning, shooting etc is neuropathic (or to do with nerves) right? and it is in the distribution of the pudendal nerve?"etc.
It does seem as if your doctor does need an introduction to PN. Hopefully he or she will be amenable to this. If not, and they are still sceptical, there is only one choice in my opinion ; Ditch them! I have learned the hard way that trying to get someone on side can prove impossible. Don't waste your time trying as I have done. Move on.
Doctors. . . . . there are tons of them to choose from!!
Hope you find someone who understands, or that the GP you are currently with can get to grips with the concept of PN and start to help you rea.
Let us know how it goes.
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.
Re: Newbie
Hi Rea and welcome
As you`ll see I`m newish to this too, but I printed off info of PN, highlighted all my symptoms, which were all of them. Wrote a covering letter and asked my GP her opinion.
As you`ll see by the post`s above she got back to me, and has agreed my symptoms could be PN and now I`ve got a plan of action, instead of sitting here in pain with nothing being done.
I`m not sure how it works with doctors over there for you, but perhaps something similar may `open`the door to at least get your GP onside?
Let me know how you get on.
Joyx
As you`ll see I`m newish to this too, but I printed off info of PN, highlighted all my symptoms, which were all of them. Wrote a covering letter and asked my GP her opinion.
As you`ll see by the post`s above she got back to me, and has agreed my symptoms could be PN and now I`ve got a plan of action, instead of sitting here in pain with nothing being done.
I`m not sure how it works with doctors over there for you, but perhaps something similar may `open`the door to at least get your GP onside?
Let me know how you get on.
Joyx
Re: Newbie
Hi Helen and Calluna....and thank you blightcp for your prayers.
Yes, wonderful news.
Better than I could have hoped for, just having a GP on `our` side and ready to refer makes all the difference.
I`ll lend her to you Helen but really wish you could find a GP so nice and understanding.
Thanks all of you, your support and advise has helped me more than I can say.
I`ve got everything ready for any flare-ups, tramadol and an ice wrap thingy, that my husband went out and bought after your ice suggestions Calluna.
A repeat prescription for pregabalin and a much more positive attitude.
I`ll keep in touch and let you know any news from me. I won`t be far away, reading the boards and lurking, ready to jump in if I can help anyone with my little bit of knowledge.
Take care and sending healing thoughts to you all.
Joyx
Yes, wonderful news.
Better than I could have hoped for, just having a GP on `our` side and ready to refer makes all the difference. I`ll lend her to you Helen
but really wish you could find a GP so nice and understanding.Thanks all of you, your support and advise has helped me more than I can say.
I`ve got everything ready for any flare-ups, tramadol and an ice wrap thingy, that my husband went out and bought after your ice suggestions Calluna.
A repeat prescription for pregabalin and a much more positive attitude.
I`ll keep in touch and let you know any news from me. I won`t be far away, reading the boards and lurking, ready to jump in if I can help anyone with my little bit of knowledge.
Take care and sending healing thoughts to you all.
Joyx
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Newbie
Good luck Joy,
It's lovely to know that you will have that necessary, knowledgeable GP support. How much delivery charge ? That woman is worth her weight in gold.
It only takes a little bit of extra thought from their perspective, but is worth so much to you. It will be an end to unnecessary frustration and you wont be sent running hopelessly up medical blind alleys time and time again. Hopefully there will be a sharp resolution to the problem now too.
Helen x
It's lovely to know that you will have that necessary, knowledgeable GP support. How much delivery charge ?
That woman is worth her weight in gold.It only takes a little bit of extra thought from their perspective, but is worth so much to you. It will be an end to unnecessary frustration and you wont be sent running hopelessly up medical blind alleys time and time again. Hopefully there will be a sharp resolution to the problem now too.
Helen x
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: Newbie
I had an MRI 3 Tesla but it was only of part of my pelvis. Came back normal. A doctor in the ER admitted they wouldn't be able to read it. I am going to get a copy and send to Houston. My neurologist knew what was wrong as soon as I explained my symptoms. She has seen 3 other cases in 11 years. I would love to see Hibner but he does not take my insurance. I also found out that a doctor that has trained under Hibner will be working in the same office is now accepting patients. I had an appointment for Sept 25th but cancelled because of $$$. It would have been 300 cash, or so I was told. Do they do nerve block on 1st visit (like Houston)? Trying to see Dr. Ioannis Skaribas, who replaced Dr. Renny, but have not heard from them about an appointment.
Symptoms began 6/27/12. Diagnosed with Vulvodynia.Estrace and Lidocane with no relief.
Uretha enlarged Aug. 2012. MRI of Lumbar in Sept. 2012.Normal. Did MRI 3 Tesla of ischial spine to Sacro Spin- Normal. Houston-Nerve Block 10-31-12 & MRI (MRN) entrapment of perineal branch, more on right side. Dr. Hibner- block of perineal branches and sclerozation w/relief over 1 month. SIJD/Piriformis Syndrome Left Side. Gabapentin 2400 mg.
Uretha enlarged Aug. 2012. MRI of Lumbar in Sept. 2012.Normal. Did MRI 3 Tesla of ischial spine to Sacro Spin- Normal. Houston-Nerve Block 10-31-12 & MRI (MRN) entrapment of perineal branch, more on right side. Dr. Hibner- block of perineal branches and sclerozation w/relief over 1 month. SIJD/Piriformis Syndrome Left Side. Gabapentin 2400 mg.
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Newbie
Good luck rea,
All you need is someone who is PN aware and open minded. Who is the neurologist you mention? Can she give advice about who to see? although I know the choice needs to be insurance based.
Let us know how things go.
take care,
Helen
All you need is someone who is PN aware and open minded. Who is the neurologist you mention? Can she give advice about who to see? although I know the choice needs to be insurance based.
Let us know how things go.
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.
Re: Newbie
She is Dr. Hanif in Pikeville, KY. I'm her 4th case in 11 years. She doesn't treat but tried to help me get a diagnosis. She is sending me to Lexington, KY for a consultation with a doctor in their pain management clincic that has done nerve blocks. 2 wks or more to get in.I'm nervous about this cause I don't know if he does guided or not.
Thanks for your help. I'm new and although I've had this for 3 months, my symptoms are becoming worse and coming on almost as soon as my feet hits the floor. How do I know if I have entrapment or not? Sitting on toilet seat and/or u-cushion but I know I'm doing more harm to myself.
Thanks for your help. I'm new and although I've had this for 3 months, my symptoms are becoming worse and coming on almost as soon as my feet hits the floor. How do I know if I have entrapment or not? Sitting on toilet seat and/or u-cushion but I know I'm doing more harm to myself.
Last edited by rea on Fri Sep 28, 2012 12:03 am, edited 1 time in total.
Symptoms began 6/27/12. Diagnosed with Vulvodynia.Estrace and Lidocane with no relief.
Uretha enlarged Aug. 2012. MRI of Lumbar in Sept. 2012.Normal. Did MRI 3 Tesla of ischial spine to Sacro Spin- Normal. Houston-Nerve Block 10-31-12 & MRI (MRN) entrapment of perineal branch, more on right side. Dr. Hibner- block of perineal branches and sclerozation w/relief over 1 month. SIJD/Piriformis Syndrome Left Side. Gabapentin 2400 mg.
Uretha enlarged Aug. 2012. MRI of Lumbar in Sept. 2012.Normal. Did MRI 3 Tesla of ischial spine to Sacro Spin- Normal. Houston-Nerve Block 10-31-12 & MRI (MRN) entrapment of perineal branch, more on right side. Dr. Hibner- block of perineal branches and sclerozation w/relief over 1 month. SIJD/Piriformis Syndrome Left Side. Gabapentin 2400 mg.
Re: Newbie
That is the 6 million dollar question on this forum. Some people have gotten 3T MRI's from Dr. Hollis Potter in NYC that have shown nerve entrapments and some people have gotten MRN's from Dr. Aaron Filler that suggest nerve entrapments. The Nantes team published an article on how to diagnose a nerve entrapment http://www.pudendalhope.info/sites/defa ... iteria.pdf My symptoms did not match their criteria exactly but I turned out to be entrapped.rea wrote:How do I know if I have entrapment or not?
There are no tests that are proven to be 100% accurate for a diagnosis of nerve entrapment so most people try some conservative therapies such as physical therapy first and only go for pudendal nerve release surgery after conservative therapies have failed.
Best,
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.