Re: Jayne from Jo

From: Jayne (
Sun Jan 6 16:14:36 2002

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


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