Jayne, a kindred spirit

From: Jo Eslick (wallamara@hotmail.com)
Mon Jan 7 02:26:24 2002

 Hi Jayne

I believe I have found a kindred spirit in you!  It was so weird reading through your reply to my last post I was laughing, wanting to cry & almost hiccupping at the same time!  LOL

I have a feeling you are are touchy feely kinda person prone to wanting to give generous hugs to those who you tink need them, & I am betting that you don't mind chatting over a cuppa or well maybe two or three right?   My husband used to proudly announce he married me because I talked enough for the two of us!  LOL  Tomes have changed though, and now I have to work hard to find a gap to put in my 5 cents worth in a conversation (well we have been married 18 years and together 20yrs...)

I am very fortunate to have this specialist team at the Royal Women's Hospital in Sydney looking after me.  They see hundreds of women in similar circumstances to us each month, so you can imagine the sense of relief and feeling of fresh air I get when I am with these wonderful people.  The clinic is headed up by Dr Theirry Vancaillie and I will be forever grateful to Helen Dynda for pointing me in his direction.

The team run three different clinics and of-course being the difficult chook that I am, I get to see someone from all three!  LOL The pain specialist is a wonderful lady who is a teaching Professor at the Sydney University and works with interns and lectures on pain management and the use of pain medication in treatment.  She holds a clinic one afternoon a week, and only see's maybe 4 or 5 patients in that afternoon session.  Prof. specialises in the pain management of cancer patients and has an uncanny ability to read a person and tell them what she has discovered after a 10 minute chat.  Shane almost choked when she described me to a T after reviewing my notes from our first interview and after her careful, yet brief questioning.  It was amazing.

Now, to answer your questions about oxycodone and oxycontin.  Oxycodone is equivilent to morphine and is dispensed under various brand names in other countries.  Here in Australia it is called Endone and is a restricted medication and only prescribed under strict guidelines.  Oxycontin is the slow release version of oxycontin and is the preferred medication to use in a chronic pain situation.  As I explained before, the oxycontin builds up in your system over a number of days and then provides a more even spread of pain relief.  Oxycodone works over a shorter period of time, works within a short space of time and then it's effectiveness deminishes quickly.  That is why oxycodone is used specifially for breakthrough pain.  The advantage of opiad medication is there are no side affects to organs and does not affect kidneys, liver or cause ulcers. So it is certainly worth talking to Mark about both medications as an alternative to what you are currently using.  I also have to take paracetamol twice daily, in the USA they would have iboprofen, I'm not sure what you would use in Canada.  It is an over the counter medication though.  At night I also take amitryptaline...I think the spelling is right...it is usually used in high doses for depression but has proved to be effective in lower doses for pain management at night & assists with sleep.  It is the cyst that is stopping me from sleeping at the moment.

Now...bladder and incontinence, this is another of the clinics available at the women's hospital.  Physiotherapy is useful for a number of reasons.  Originally I had very evere bladder pain & incontinence problems until my ovaries were removed in April last year.  They had been tethered to my vagina, bladder, bowel & abdominal wall and caused me indescribable pain.  When they were removed, pathology revealed that both ovaries were covered in endometriosis.  The doctor explained to me that when we experience severe abdominal pain, it causes our pelvic floor muscles to become tense and unable to relax.  This irritates the bladder and promotes incontinence and pain.  The outside of my bladder is completely covered in adhesions and therefore has a restricted capacity to add to my woes.  Before surgery it was planned that I would be taught certain excersises that would help me learn to relax my pelvic floor muscles and hopefully reduce my bladder urgency.

After the removal of my ovaries, the symptoms and problems shifted and new problems emerged.  I still have to a lesser extend problems with incontinence and urgency, but not nearlly as severe as prior to surgery.  It is of-course a very undignified way to find out how well your pelvic floor muscles are working, but by now, who has any dignity left, am I right?  Well While giving me an internal examination, the physiotherapist will repeatedley ask me to tighten my pelvic floor muscles, and then relax them.  There is also a machine that can measure the intensity of the flexinf muscles, but my vaginal area is very sensative & I was unable to tolerate this part of the procedure.  What resulted was a finding that my pelvic floor muscles on the left side (where I experience constant pain) are very strong, and on the right, there was almost no tone at all.  Three times a day I have to concentrate on tightening my pelvic floor muscles and work to increase the length of time I can hold them before relaxing.  The optimum goal for me is a slow count to ten.

I also have to stop & start the stream of uine as I am voiding to increase my control over this action.  Occassionally when pain is severe (as it was last night) my bladder will spasm & I am unable to void.  I then need to catherterise to empty it, and I actually needed to do this twice yesterday.

Now, bowel, there is a way of massaging your decsending colon to improve bowel movements.  Starting in the bottom right side of your  lower abdomen, rub with the flat of your hand straight up towards your ribcage.  Then across just below the ribcage to the left side.  Then rub straight down on to the lower left side of your abdomen finishing at your pubic bone.  I do this for around 100 rotations each morning in the shower, if I am feeling a bit sluggish, I repeat it in the evening.  Also when you sit on the toilet to open your bowels, your knees should actually be raised just above your waist, so use a telephone book or something to rest your feet on at the right hight.  It is also important to relax the stomach muscles, we are so used to holding our tummy muscles in and we quite often will even push a little to encourage things along.  This in fact closes off the colon and makes it more difficult to defficate, we should also be sitting with our backs straight.  It takes some getting used to & I am still finding myself having to make a concious effort to follow these instructions.

Well, I think that covers all of your questions, oh yes & thnx for the prayers, it rained last night over 50 points and all but put out the fires in the mountains & Sydney, the South Coast still suffers though.  Yes, there is also a large number of native animals that suffer as a result of these fires and thankfully we have a very good volunteer organisation called WIRES that looks after injured and ill wildlife.

Well, I have quite a few emails here to answer tonight, and I am already starting to feel uncomfortable....sitting is one of the things that cause pain!

Thanks for reading/listening, I look forward to many more interesting letters....

love & gentle hugs

Jo (Australia)

P.S. The health system here in Australia is pretty good too..... I couldn't imagine being anywhere else.


>From: "Jayne"
>Reply-To: adhesions@adhesions.org
>To: Multiple recipients of list ADHESIONS
>Subject: Re: Jayne from Jo
>Date: Sun, 6 Jan 2002 17:16:44 -0600
>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.
>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
> >
> > 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
>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 (spiregen@webcomcreations.com) 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?
> > 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

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