Re: Jayne from Jo

From: Sally Grigg (
Sun Jan 6 18:31:56 2002

>----- Original Message -----
From: Jayne <> To: Multiple recipients of list ADHESIONS <> Sent: Sunday, January 06, 2002 5:16 PM Subject: Re: Jayne from Jo

> Hi Jo,
> Sorry it took some time to get back to you but I was in so much pain today
> that I couldn't even concentrate.
> Silly me thought that if I feel constipated I must be right? So I took
some > laxatives and right away I had the worst abdominal AND stomach cramps I
felt > like I was giving birth to all three of my kids at the same time. It
> cleared my bowels but I still have that weird sensation that my rectum is
> being pushed up into my abdomen when I sit down and EVERY bowel movement
now > causes pain across that scar. There has to be some connection. I've also
> heard that tailbone problems can cause bowel problems but haven't really
> looked into it yet.
> ======================================================================
> > I am struggling a bit myself at the moment, I had a very bad night with
> pain last night to the point of vomiting. *sigh* I hate it when it gets
that > bad! I was glad to read that you have a good family doctor, that is just
SO > important! I am currently having a few problems with mine which is sad
> because she has been my doctor since my pregnancy with my now 14 yr old
> daughter. I missed an appointment with my Gyno, long story but the fact
is > Shane rang and spoke to my Gyno, explained why we missed it and filled him
> in on what had happened during my recent visit to a specialist team at a
> Sydney hospital who deal with Endometriosis and Gyno problems
specifically. > ======================================================================
> I hear you, Jo. Fortunately, I don't get sick and vomit but then again I
do > sometimes get nausea which is worse in my mind. I am such a wimp when it
> comes to nausea. I have often said if I had had morning sickness with my
> first child she would have been an only child. *-) I so hate nausea.
> So you have a Shane too? My husband's name is Shane. I've noticed that
my > family doctor is starting to be a little more hairbrained lately but then
> with me he knows he can let his hair down if he's having problems and
> doesn't have to put on a show. He has been distracted a little on the
last > few times I've been into see him. He's two years younger than me which is
> strange, having a doctor younger than you and when it comes to
> gynaecological things he always refers me to specialists. <grin>
> Sorry to hear about your problems with your doctor. In some ways I know
> what it's like because I was born in England and the NHS just has to be
the > worst health care in the world. Since being in Canada the past 20 years I
> have been spoilt. In my mind the health care here is fabulous. My hubby
> wants to return to England to live and the only thing stopping me is the
> health care. It scares me to death to think that I would have to put up
> with a health system that treats it's patients like dogs. I have heard so
> many awful things about it that I don't want to leave my cushy health care
> here. I even witnessed some events that were not impressive too on my
> recent visits back home.
> =======================================================================
> >
> > Anyway, this visit was to see the pain specialist who see's what she
> call's the "more difficult Chronic Pain patients" not in difficult as in
> obnoxious (although I can be if I wanna be...hehehe) to determine the best
> long term plan for pain relief through medication, physiotherapy and other
> diversional therapies. I had explained to her during our consultation
that > my GP was starting to become a little concerned about the amount of
narcotic > pain medication I was on. She understood the issue from both sides & said
> that she would write directly to my GP (something she doesn't usually do,
> it's generally a generic report sent after all members of the team have
made > their assessment within their field.) She was happy with all the things
> that I had discovered and organised for myself (pain councilor,
diversional > therapies, alternative medicine...etc) and agreed that the pain
medications > be! ing prescribed for me were in fact just the right combination.
> =======================================================================
> Well that certainly sounds like a positive outcome doesn't it? My GP also
> has the same concerns about my arthritis medication because I'm going to
be > on it for life just like you are with your pain meds. His biggest concern
> is the side affects and the potential for organ failure and ulcers and
such > which can happen when on long term arthritis medication.
> I went to see a doctor (a physicist or something?) and he told me that
> Tylenol 3's are not addictive and if I need them for pain then "bloody
well > take them". He even wrote to my GP telling him this which Mark (my GP)
was > not too thrilled about. Only trouble is is right now he writes me a
script > for Tylenol's for one year and they are dispensed once a month at 180 at a
> time. With Tylenol 3's they are classed as narcotics and can only be
> written up once a month apparently.
> =======================================================================
> >
> > I also had an hour consultation with the physiotherapist who will be
> helping me with my bladder problems and incontinence. We discovered that
I > had very strong pelvic floor muscles on my left side (where I experience
> constant pain) and next to no strength in my right side pelvic floor. So
we > have worked on a couple of things to help me with my pelvic floor and also
> my bowel movements. She was impressed that I was already massaging my
> descending colon (spell?) and simply advised me to slightly adjust the way
I > did this massage.
> =======================================================================
> How can a physiotherapist help with bladder and incontinence? Can you
> elaborate a little here please? I'm curious as I usually see
> physiotherapists as people who rehabilitate one after surgery, accidents
and > so on. Massaging your colon? How? This is all intriguing to me.
> =======================================================================
> >
> > So all in all it had been a very successful day. When I got home (this
> clinic is in Sydney a three hour drive from the town I live in) there was
> little time for me to organise a consultation with my GP before she went
on > holidays for the Christmas & New Year period. It turned out that she was
> fully booked, so I simply left a message for her letting her know what
> prescriptions I needed her to write up before she went away. I had been
> having a rest in the afternoon and the phone rang, it was my GP and she
was > very unhappy with me. My Gyno had rung her (as he told Shane he would, to
> organise the new HRT prescription I would need as a result of my Sydney
> visit) and simply she was upset that she had been left to write all these
> scripts for me for very serious restricted medications without a report
from > the Sydney clinic, she then went on to blast me about missing the Gyno
> appointment. Several times I repeated to her what had happened and that!
we > had contacted my Gyno & explained the circumstances etc.... she just
> wouldn't let up! In the end I was in tears & couldn't talk to her any
> longer and handed the phone over to Shane. He had to be very firm with
her > & assert that we had spoken to my Gyno and he was happy with what was
> happening!
> >
> > Jayne, all I can say is .... I was devastated! This was my rock! My
one > doctor who had always been in my corner and had encouraged, congratulated
> and said she admired my will to go on and my positive outlook. I cried
and > cried for over half an hour, it was just the last straw, I had had such a
> tough week as travel is very uncomfortable and is physically & mentally
very > draining and to make matters worse I am coping with additional pain caused
> by an ovarian remnant cyst. I will have to go and see her next week Jayne,
> and I can tell you it isn't a consultation I am looking forward to. I
> honestly don't know if I will be able to have the same trust and
confidence > in her now, I feel that she acted dreadfully as a doctor and attacked me
to > the point that I was crying! That isn't the way to build doctor/patient
> trust!
> =======================================================================
> Oh Jo this is just awful. I would be absolutely devastated if Mark did
this > to me so I know how you must be feeling. If you don't have that trust
then > there's nothing. It's just like a marriage isn't it? If you want to
email > me privately ( over this please do, OK? We
> seem to have quite a few things in common don't we?
> I recall one doctor telling me (this was my second rectocele) that if he
> repaired it it would damage my vagina to the point that I would never be
> able to have sex again. What kind of a thing is that to say to a patient?
> I remember crying for hours too. We seem to have had similar experiences
> haven't we?
> ========================================================================
> >
> > Well, I have had a very hard time since Christmas with increasing pain,
> nausea and I am getting very little quality sleep. I was very close to
> getting my husband to take me to our local hospital the other night, and
I'm > sure you know how that feels! So, I made it through the night & made an
> appointment to see one of the other doctors at the same office. As it
> turned out, he was wonderful, after a brief overview of what I had been
> dealing with over the last two years since my hysterectomy I knew I had
> found my new doctor. He was sympathetic, quick to understand the steps
that > had been taken recently to manage my pain over the long term and increased
> the twice daily dose of oxycontin and said that I needed to take it at the
> same time every day to get the maximum benefit from it. He explained that
> this drug works on a stable level within our system over a long period of
> time. While oxycodone (which I use for breakthrough pain) is a qui! ck
fix, > works quickly but it's effectiveness ending in a short space of time. He
> said that the amount of oxycontin I required was worked out based on the
> number of oxycodone I was taking each day. Based on what I was taking, he
> doubled my current dose.
> =======================================================================
> I hear you about the lack of sleep and with me also having fibromyalgia
some > days I simply do not have the energy to do anything. I feel so guilty too
> because my family have to rally around and keep the house running.
> Many nights I will be wide awake ALL night sometimes two or three times a
> week. My sleep pattern is all over the place and I have to take sleeping
> pills once in a while just so I can get at least one good night's sleep
but > then you also have to be careful not to take them too close to the time
you > took the painkillers or man are you stoned the next day. *-)
> I have not heard of oxycodone. Maybe it's named differently over here? I
> have just checked the net and it seems to be another name for Percocet.
Am > I right? If so, I have been wondering about switching to this as I have
had > it before. The really great thing about Mark too is if I suggest
something > to him, he'll talk it over with me and then say Ok if you want to try it,
> lets try it. So I may ask him if I can switch to see how affective it is.
> Apparently, oxycodone is used for treating pain associated with OA which
is > what I have so I would be covering more than one type of pain with this.
> MMmmmmm maybe I should suggest it to Mark.
> I am so like you. I would rather stay home and suffer in pain then sit
for > hours at the ER waiting, sat on an uncomfortable bed, for a doctor to tell
> me to take two aspirin and see my GP the next day.
> I am at the point now were I really don't know what this pain on my right
> side is because it is so like the pain I experienced with my kidney stones
> and gall bladder. I have been told if I get the pain to go straight to
the > ER and have an IVP to check for kidney stones but the last couple of times
I > did this they found no stones at all so I have decided that until I see
> blood in my urine then it's not a kidney stone. The groin pain I
experience > is the same as when I was suffering with kidney stones too.
> I hate this guessing game it drives me nuts.
> =====================================================================
> >
> > The part I don't understand Jayne is that my GP had told me that if I
had > a good day, then she said not to take the night time dose of oxycontin!
> Which was the opposite of what this other doctor told me. My husband & I
> felt that he should be my second doctor, as my current GP is only part
time > and sometimes I have waited in pain until she was available the following
> week because it was easier than trying to explain it to another doctor.
So > I asked this doctor if he would be my second doctor because of my GP's
part > time hours. He said he would be happy to, and said that he would go over
my > file & familiarise himself with my history.
> =======================================================================
> I am so lucky! I only have to call Mark's office and tell them I'm coming
> in and they make time for me. I can even call Mark at home in the middle
of > the night if need be (I don't though he needs his sleep too)
> I am so pleased that he is going to be your second doctor. He sounds like
> the type of doc who understands your problems and is willing to work with
> you with it.
> Some doctors differ on how drugs work and so this is probably why you're
> getting this two-sided information from them. I personally would trust
the > second one he sounds like he knows what he's talking about.
> =======================================================================
> >
> > LOL I am sorry that you have born the brunt of this, it has been
spinning > around in the pit of my stomach since the episode occurred before
Christmas, > and just now writing to you I found myself getting to this sentence!
*sigh* > well that is what this group is all about, letting off steam, finding
> support and understanding from others who have similar experiences. I
find > that trying to explain things to my friends sometimes is hard because it
> sounds like it should be an episode of Day's of our Lives! LOL
> =======================================================================
> Hey there's nothing to be sorry about, OK? You needed to get this all out
> and what better way to do it than to share it with me and the others that
> actually do understand what you're going through?
> =======================================================================
> >
> > So getting back to where I started this, I am glad you have a great
friend > & GP. I look forward to reading your future posts...that is if you
haven't > run off after trying to read this long and woeful tale....
> ======================================================================
> I must have read it all because I got to this part of the message didn't
I? > <grin>
> ======================================================================
> > P.S. Could all those who read this post please pray for rain and help
for > our paid and volunteer firefighters. Much of my home state of New South
> Wales is suffering from the worst bushfires since the 1960's and these
will > soon become the worst fires on record. Bushfires are a part of our life
> here, many native plants only germinate after a fire, BUT we have had
> thunderstorms and arsonists starting fires every where and many homes have
> been lost.
> ======================================================================
> I already have been and will continue too. I don't fully comprehend the
> devastation of bushfires as I have not experienced them though. All the
> wildlife that is being killed off has to be devastating too?
> ====================================================================
> Keep ya chin up OK?
> Take care
> Jayne

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