Re: Jayne, a kindred spirit

From: Jayne (
Tue Jan 8 19:27:31 2002

Hi Jo,

> 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

Me too. Not only that you have a husband, Shane, who you've known for 20 years (my Shane and I celebrated our 20th anniversary last year) and you also have a daughter, Katie like we do. Don't tell me yours is 14 because that's the age mine is. *-)

> 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...)

You got it in one! Snap to everything you say above. <grin>

> 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.

I'm glad you have found somone who understands you. If Mark doesn't do anything I shall have to find someone in my area to help me with it.

> 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.

I had not thought of seeing a pain specialist especially over this pain in my right side that sits underneath my ribcage but radiates to the back and down to my groin. It also feels like a pulled muscle, you know like when you jerk yourself wrong and then you can't move without hitting the ceiling when the pain hits you? The only difference between a "real" pulled muscle on this pain was that I could move and it didn't hurt like a pulled muscle would.

I had this pain for 3 years and after having an ultrasound they found stones in my gall bladder, said ok that's the reason for your pain lets whip it out. So it was done! BUT a few months later after I had healed and was getting back to some normalcy the pain returned. I was so &*^%$#@ with that. I tried to ignore it because I was having more pelvic problems and again needed surgery.

So the surgery was booked for Dec 9th, I had my pre-admission tests done the week before and everything was going to plan then all hell broke loose. That afternoon, the day I had my pre-admission tests done (including a urine test) I started to urinate blood. Literally I was urinating bright red blood so I said to myself "Mmmm this doesn't look good maybe I should get to the hospital". So off we went and I was given an IVP (an X-ray taken at intervals after being injected with a special dye). The doc read the results and said he would have to keep me in overnight and when I asked why he told me the Urologist would explain it to me the next day.

So there I was all confused wondering what the 'eck was going on, on a drip (IV) pumping pain killers into me all night (forgot to tell you the pain was quite bad didn't I?) waiting to find out what the Urologist was going to say.

The next day she came by and sat on the bed with a serious look on her face and I'm thinking geez what do I have. She then said I needed surgery right away. My jaw just about hit the floor when she said that and I told her I was already booked for surgery a week later couldn't it wait to which she said NO!Apparently, I had pouches of kidney stones chocker block full at the end of my ureters where they entered the bladder and the pouches shouldn't be there, it was rare for them to be there as there should only be little dimples. Not only that the ureters has stones all the way up them and there were stones in my bladder and kidneys to boot. My urine was backing up into my kidneys too. I didn't realize the seriousness of all this until she told me that it could be fatal if not operated on as soon as possible.

This was Dec. 2nd and because it was near to Christmas there was a bed shortage so she couldn't get a bed or operating room right away and she couldn't get one until Monday (6th) BUT she said if ANYTHING happens I was to call her office right away, to get to the hospital and she will do the surgery right away.

She gave me a script for Tylenol 4's and asked me how on earth I stood such intense pain for so long especially as I had so many stones all over the place. She also called my OB-GYN and told him so he cancelled the surgery and asked that I call his office to re-book.

I had the stendt (stindt) for two weeks and all seems to be well now. I still see her every 6 months. Twice I have had this intense pain enough to make me go to the hospital and she has scheduled one ultrasound because I was in so much pain but nothing was ever found. So what else could this pain be if it's not adhesions, my liver? Surely my skin would yellow if it was that wouldn't it? But because the pain is so similiar to the one I get during a kidney stone attack I don't know. Very confusing.

> 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 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.

Thanks for the info. on the oxycodone I shall discuss this with Mark and let you know what he says, OK? Elavil is amitryptaline and I was prescribed it for my fibromyalgia but I didn't like the side affects so stopped it. Apparently, Tylenol with codeine (which I take) is the Canadian name for Paracetomal which I used to take when I was back home in the UK. I think you can get Paracetomal without codeine though and that would be the over-the-counter one.

> 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.

Mmmm never knew you could get adhesions on the bladder wonder if I have? I had two birch procedures done (my bladder is in a net know) plus that surgery I had mentioned aboved. Maybe I should get someone to give me a once over just to find out if I do have adhesions and where; it would seem everywhere. *-)

> 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.

My OB-GYN told me not to bother because it wouldn't help me. I thought if I tightened my pelvic floor my organs would stay up and stop falling down but he said apparently that these types of exercises wouldn't help at all because my floor was so weak anyway. I don't know.

> 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.

Ouch! You catherterise yourself? I hate them things they leave my bladder and urethra burning like crazy and feeling like I have to pee all the time almost like cystitis.

> 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.

Thanks Jo I will give this a try and hope it works for me.

If I don't get back to you right away don't worry sometimes it may not be that I'm doubled up with pain. I am into genealogy (family trees) in a very big way and maintain quite a few websites and mailing lists myself. I spend a lot of time with that. It's a hobby that is very time-consuming but well worth the effort put in to it.

Well, I'm off, take care.

Ontario, Canada

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