New with you-- my bad years, continuing
Posted: Sat Mar 15, 2014 5:19 pm
Hello readers,
I'm a new senior citizen guy here in this forum. I just wanted to tell some of
the things that happened to me and very soon ask some questions. You see, early
next week I go for my 2nd visit to a US MD who's well known in the damaged pudendal
nerve world. There was so much shame from and mortification over my
chronic pelvic physical pains that I couldn't tell others about it.
My pelvic pain troubles began nearly 5 yrs. ago. One morning I just sat up in
bed and had sudden, constant, high-level physical pain in the midline area of
the pelvis, in the underside centered in or around the anus and rectum. This
evil pain lasted some 5 days as I recall-- I stayed in bed all those days and
I'd never done that sort of thing before this medical problem began. I soon felt
the pain move into the right buttock where it stayed for years. [The left
buttock never had any neurological symptoms.] In that right buttock, I had
constant, intense burning at times, sciatica (especially hitting during sleep in
2010 and on 2 days all day long, in June 2012 and in Feb. 2013) and at other
times, I had some degree of numbness which I noticed when I walked. Early in
this problem, I had one day and only for 1 hour, out-of-the-blue, sudden, intense
(pain level 10), very brief electric shocks at the anus. I think it was in the
last 2 years that I began to have sharper, stabbing pains now and then but
rather infrequently. I also had at times, constant, high-level burning physical
pain in or around the rectum. When this would happen, I usually went to bed with
ice under the right buttock and some times under both. I never minded the cold
from the ice and the ice brought me relief 'til the godawful, constant burning
might start another day.
Early in this problem, a pelvic MRI scan was done but the radiologist found
nothing wrong. I was told I have idiopathic neuropathy. Just before the
pelvic neurological symptoms suddenly began, a musculoskeletal problem began and
it affects the rear of the upper right leg and the right buttock-- this still
isn't treated but a sports med MD told me last year he can help me. He's an
expert in ultrasound which he uses on a patient-- he doesn't want to rely on a
technician to do a study. The musculoskeletal problem was finally diagnosed in
Jan. 2011 as a right leg high hamstring tendonopathy (which causes pain at the
right sitbone and some discomfort when bending at the waist). When I was sent
to p. t., the p. t. pressed really hard all over
the right sitbone. She hit a spot that made me see many stars: as she pressed hard in
one spot, the pain was suddenly level 10 physical pain. When she saw me wince
from the great pain, she said I might have ischial tuberosity pain syndrome
which, she said, is extremely difficult to heal from.
Anyway, the sports med doc used his ultrasound device on both sitbones last year. He told
me that the hamstring muscle tendon at each sitbone is torn but the right side
is the worse of the two. In his plan to help me, he said he'd take my blood,
spin it, and inject the blood platelets into each torn hamstring muscle tendon,
at each sitbone. He said I must not take any NSAID for 1 week before and for 3
months after the injections. Also, he said I MUST be sedentary for 3 months so
that the tissues heal. I think he told me that these hamstring muscle tendon
tears at one or both sitbones aren't so uncommon.
Almost 2 yrs. ago I went to a famous chronic pelvic pain, pudendal nerve damage
expert. The MD did special testing and told me I have PN because of the physical
things I had done in life: decades of mainly longer distance bicycling (but I
never had any pain nor numbness nor sex organ troubles from my rides), marching
band in high school and in college, and cross country in high school. The MD
injected methylprednisolone into each buttock. I was told to return one month
after these injections for the same injections, and then return two months after
the first set for more injections. But about 2 days after returning home, I saw
in the news the horror that numbers of people in the US were dying from
fungus-contaminated injectable methylprednisolone. One news outlet said to check
the CDC and FDA websites to find out which clinics had the deadly methylprednisolone. I
checked and was stunned that the clinic I had gone to did indeed have the deadly
fungus-contaminated injectable methylprednisolone while I was there! I was so
shaken by this that I never returned for more injections. But I'm going back to
that clinic next week.
Last November I had the special MR neurography but it was done in my city after
I told my doc that the Hosp. for Special Surgery (in Manhattan) shares with any
medical institution the protocols to set up the MRI machine so that nerves can
be studied. Since this was, I think, a most uncommon study where I had this
done, I thought that maybe the radiologist(s) wouldn't be experienced in what to
look for. The radiologist wrote in his report that no neurological lesions were
found in the right half of the pelvis. [I thought this odd because I only had
neurological symptoms on the right side!] He also wrote: "Short segment of mild
enlargement, T2-hyperintensity, and hyperenhancement of LEFT pudendal nerve as
it traverses posterior to the ischial tuberosity, suspicious for focal neuritis
or perineuritis."
Months before the neurological troubles began in my pelvis, another neurological
problem began in my right thigh. Only when standing or walking, I'd suddenly
experience awful burning pain in the right thigh. The burning-stinging pain
would become so bad I was forced to sit which made it go away. In some early
month in 2011, an MD diagnosed meralgia paresthetica. He said that a very tiny
surficial nerve caused this. He told me, while he smiled, that the nerve would
just die in time and I'd only have numbness left in my right thigh!
Other aspects about my case:
- never any pain with bowel movements even when there's straining from
constipation
- no pain in sex organs and no problem with erections
- tailbone pain exists and causes me misery only if I have to sit on or even
recline at an angle on something that causes pressure to the tailbone area
- no urinary troubles
- no incontinence in bowels and in bladder
- if I do sit a while on a homemade horseshoe-shaped U which I put atop the
nice, stiff plastic toilet seat I removed from the bathroom (I tuck the
horseshoe-shaped U, which I made from a swimming pool noodle, under me when
sitting on this arrangement), I feel some sharper pains in the perineal area
when rising from sitting-- I figure that the soft tissues of the buttocks are
coming back together and this causes the sharp, rather brief pains in damaged
nerves.
- bowel movements changed drastically - and for the long-term - twice. Irritable
bowel syndrome began ~ March-April-May 2011. My doc thinks that use of a
probiotic and psyllium husks might help me so I started the former at the start
of this month and then, more recently, added the whole psyllium husks. Yes, I
think both were a good idea for me even though my movements before these 2
recently added items were - and still are - easy and bulky (but not daily as
they were before this pelvic nightmare began).
- Since ~ March-April-May 2011 (when the bowel movement function changed for the
2nd time), I get, only when sitting and extremely rarely when laying down on my
back, a brief, 1 to 2 seconds-long, painless, probable spasm at what I figure is
the lowest end of the rectum or maybe the upstream end of the anus. This brief
quivering happens maybe several times a day when I happen to sit a few times a
day.
- of course, I can't ride my dear bicycle but I don't fret about this and I do
live in a very bicycle-friendly city
- due to both the chronic pelvic pain and another still-unresolved medical
problem (which may be a left side difficult-to-understand-and-detect hernia), I quickly became very inactive physically and really can't do much except stand all day long. Consequently, my weight has gone up by an alarming amount.
- with this neurological adversity, life has been dramatically altered in bad
ways. I never go out except for the one day each week when I go to the library
and to the supermarket. I found that the very infrequent and short drives I make
don't upset my tailbone. But last week I made another homemade item: something I
can sit on for longer drives. I'm testing it just on my usual short drives and I
hope it works for me if I have to drive far.
I'll be back later today with questions.
I'm a new senior citizen guy here in this forum. I just wanted to tell some of
the things that happened to me and very soon ask some questions. You see, early
next week I go for my 2nd visit to a US MD who's well known in the damaged pudendal
nerve world. There was so much shame from and mortification over my
chronic pelvic physical pains that I couldn't tell others about it.
My pelvic pain troubles began nearly 5 yrs. ago. One morning I just sat up in
bed and had sudden, constant, high-level physical pain in the midline area of
the pelvis, in the underside centered in or around the anus and rectum. This
evil pain lasted some 5 days as I recall-- I stayed in bed all those days and
I'd never done that sort of thing before this medical problem began. I soon felt
the pain move into the right buttock where it stayed for years. [The left
buttock never had any neurological symptoms.] In that right buttock, I had
constant, intense burning at times, sciatica (especially hitting during sleep in
2010 and on 2 days all day long, in June 2012 and in Feb. 2013) and at other
times, I had some degree of numbness which I noticed when I walked. Early in
this problem, I had one day and only for 1 hour, out-of-the-blue, sudden, intense
(pain level 10), very brief electric shocks at the anus. I think it was in the
last 2 years that I began to have sharper, stabbing pains now and then but
rather infrequently. I also had at times, constant, high-level burning physical
pain in or around the rectum. When this would happen, I usually went to bed with
ice under the right buttock and some times under both. I never minded the cold
from the ice and the ice brought me relief 'til the godawful, constant burning
might start another day.
Early in this problem, a pelvic MRI scan was done but the radiologist found
nothing wrong. I was told I have idiopathic neuropathy. Just before the
pelvic neurological symptoms suddenly began, a musculoskeletal problem began and
it affects the rear of the upper right leg and the right buttock-- this still
isn't treated but a sports med MD told me last year he can help me. He's an
expert in ultrasound which he uses on a patient-- he doesn't want to rely on a
technician to do a study. The musculoskeletal problem was finally diagnosed in
Jan. 2011 as a right leg high hamstring tendonopathy (which causes pain at the
right sitbone and some discomfort when bending at the waist). When I was sent
to p. t., the p. t. pressed really hard all over
the right sitbone. She hit a spot that made me see many stars: as she pressed hard in
one spot, the pain was suddenly level 10 physical pain. When she saw me wince
from the great pain, she said I might have ischial tuberosity pain syndrome
which, she said, is extremely difficult to heal from.
Anyway, the sports med doc used his ultrasound device on both sitbones last year. He told
me that the hamstring muscle tendon at each sitbone is torn but the right side
is the worse of the two. In his plan to help me, he said he'd take my blood,
spin it, and inject the blood platelets into each torn hamstring muscle tendon,
at each sitbone. He said I must not take any NSAID for 1 week before and for 3
months after the injections. Also, he said I MUST be sedentary for 3 months so
that the tissues heal. I think he told me that these hamstring muscle tendon
tears at one or both sitbones aren't so uncommon.
Almost 2 yrs. ago I went to a famous chronic pelvic pain, pudendal nerve damage
expert. The MD did special testing and told me I have PN because of the physical
things I had done in life: decades of mainly longer distance bicycling (but I
never had any pain nor numbness nor sex organ troubles from my rides), marching
band in high school and in college, and cross country in high school. The MD
injected methylprednisolone into each buttock. I was told to return one month
after these injections for the same injections, and then return two months after
the first set for more injections. But about 2 days after returning home, I saw
in the news the horror that numbers of people in the US were dying from
fungus-contaminated injectable methylprednisolone. One news outlet said to check
the CDC and FDA websites to find out which clinics had the deadly methylprednisolone. I
checked and was stunned that the clinic I had gone to did indeed have the deadly
fungus-contaminated injectable methylprednisolone while I was there! I was so
shaken by this that I never returned for more injections. But I'm going back to
that clinic next week.
Last November I had the special MR neurography but it was done in my city after
I told my doc that the Hosp. for Special Surgery (in Manhattan) shares with any
medical institution the protocols to set up the MRI machine so that nerves can
be studied. Since this was, I think, a most uncommon study where I had this
done, I thought that maybe the radiologist(s) wouldn't be experienced in what to
look for. The radiologist wrote in his report that no neurological lesions were
found in the right half of the pelvis. [I thought this odd because I only had
neurological symptoms on the right side!] He also wrote: "Short segment of mild
enlargement, T2-hyperintensity, and hyperenhancement of LEFT pudendal nerve as
it traverses posterior to the ischial tuberosity, suspicious for focal neuritis
or perineuritis."
Months before the neurological troubles began in my pelvis, another neurological
problem began in my right thigh. Only when standing or walking, I'd suddenly
experience awful burning pain in the right thigh. The burning-stinging pain
would become so bad I was forced to sit which made it go away. In some early
month in 2011, an MD diagnosed meralgia paresthetica. He said that a very tiny
surficial nerve caused this. He told me, while he smiled, that the nerve would
just die in time and I'd only have numbness left in my right thigh!
Other aspects about my case:
- never any pain with bowel movements even when there's straining from
constipation
- no pain in sex organs and no problem with erections
- tailbone pain exists and causes me misery only if I have to sit on or even
recline at an angle on something that causes pressure to the tailbone area
- no urinary troubles
- no incontinence in bowels and in bladder
- if I do sit a while on a homemade horseshoe-shaped U which I put atop the
nice, stiff plastic toilet seat I removed from the bathroom (I tuck the
horseshoe-shaped U, which I made from a swimming pool noodle, under me when
sitting on this arrangement), I feel some sharper pains in the perineal area
when rising from sitting-- I figure that the soft tissues of the buttocks are
coming back together and this causes the sharp, rather brief pains in damaged
nerves.
- bowel movements changed drastically - and for the long-term - twice. Irritable
bowel syndrome began ~ March-April-May 2011. My doc thinks that use of a
probiotic and psyllium husks might help me so I started the former at the start
of this month and then, more recently, added the whole psyllium husks. Yes, I
think both were a good idea for me even though my movements before these 2
recently added items were - and still are - easy and bulky (but not daily as
they were before this pelvic nightmare began).
- Since ~ March-April-May 2011 (when the bowel movement function changed for the
2nd time), I get, only when sitting and extremely rarely when laying down on my
back, a brief, 1 to 2 seconds-long, painless, probable spasm at what I figure is
the lowest end of the rectum or maybe the upstream end of the anus. This brief
quivering happens maybe several times a day when I happen to sit a few times a
day.
- of course, I can't ride my dear bicycle but I don't fret about this and I do
live in a very bicycle-friendly city
- due to both the chronic pelvic pain and another still-unresolved medical
problem (which may be a left side difficult-to-understand-and-detect hernia), I quickly became very inactive physically and really can't do much except stand all day long. Consequently, my weight has gone up by an alarming amount.
- with this neurological adversity, life has been dramatically altered in bad
ways. I never go out except for the one day each week when I go to the library
and to the supermarket. I found that the very infrequent and short drives I make
don't upset my tailbone. But last week I made another homemade item: something I
can sit on for longer drives. I'm testing it just on my usual short drives and I
hope it works for me if I have to drive far.
I'll be back later today with questions.