Re: Long Term gets longer
From: anonymous (anonymous@obgyn.net)
Wed Jul 30 22:17:49 2008
You might find this interesting
http://centerforendo.com/articles/suppmeds.htm
http://centerforendo.com/articles/afterthelap.htm
http://www.endometriosistreatment.org/html/reprint9.html
At Wed, 30 Jul 2008, Lynn wrote:
>
>Hello all of you out there, some of you may remember me from a long time
>ago. I once posted a question about endo on the diaphragm which I had
>just been diagnosed with.
>Well a lot has happened since then, I did indeed have endo on my
>diaphragm and it caused severe shoulder pain just like the pain you get
>after a lap, but much worse. It starts when you have a period but then
>in most cases it gets to be there all the time. So my consultant a
>great doctor called Bill Ledger decided that the best course of action
>was Zoladex, I had previously been on Synarel which I responded well to
>so we tried the Zoladex and what can I say I got my life back, I stayed
>on it for 18 months and had to take some other drug (Alendronate) to
>protect my bones and have regular bone scans, but it was a small price
>to pay for the quality of life I got back. Yes I did have hot flushes
>or flashes depending on which side of the atlantic you are from but
>compare sweating with doubled up in pain for a week at a time and you
>probably get the picture.
>So all was going well then I had to stop the Zoladex for a while, to
>give me a break and also to see what happened when I stopped...sometimes
>it goes away. Well it didn't and within 8 months I was in the most
>incredible pain ever. Not the shoulder pain but a horrible stabbing
>pain in my left side, and going to the toilet was awful, my best
>description was it was like pooing spaghetti. We soon found out why the
>endo had gone into my bowel and it was making a part of my bowel really
>narrow hence the spag poo and the terrible pain. So then we had to
>wheel in the bottom doctor who was a Mr Ian Adam, now I can honestly say
>if I ever had a problem with my bowel I would go back to Ian he was
>great at making me feel better about what was a pretty bad situation. So
>I had major surgery with Bill and Ian playing tag team while they sorted
>out my endo which by then was all over the place and my bowel. They had
>to remove part of my bowel and there was a chance that I would have a
>temp or perm colostomy but at that point I really had no choice.
>No kidding I did feel pretty rough after the op and I was in a high
>dependency unit for 2 days but I did leave hospital 7 days after the op
>which was a record.
>Things were much better initially but I did have to go back 6 months
>later and have the join in my bowel stretched as my body had formed a
>bit too much scar tissue, and the spag poo was back!! This was a painful
>procedure but well worth it as I had no more left side pain, and have
>not had since and that is over 4 years ago.
>However it did not sort the diaphragm endo out, that is a very risky op,
>with the risk of major complications life long breathing difficulties
>and the possibility of permanent chest pain, so not much choice there
>then. I had a break from Zoladex for about 18 months because I was
>worried that the menopause had got to me too soon, thinning skin and
>hair but recently decided to go back to it because for me it works and I
>can deal with life so much better...it also makes me thinner, not a bad
>thing when you are heading towards middle age ( or am I in it already??)
>I am currently contemplating a hysterectomy but am waiting to see how
>messed up my insides are as Bill says it would not be an easy op in my
>case we are talking major surgery again with the need to get Ian
>involved as my bowel is still all tangled up even though I am not in any
>bowel pain. So you see you need someone who tells you how it is and
>understands the implications of the choices you make. A hysterectomy
>would not solve the problem of my endo on the diaphragm and removing
>that is not an option!!
>Anyway the point of my rather long post is to say do not give up... find
>someone who treats you like an adult, tells you all the problems, gives
>you the choices and then helps you through the decisions you need to
>make.
>Do not give up if the drug you are trying does not work, try another
>one, change what you do, exercise more eat well and look after yourself.
>It is Ok to stay in bed if you feel bad, just not every day.
>Find something that works for you, reclaim your life, you only get one (
>if you get two I am coming back as my dog who has the best life ever) so
>live it in the best way you can.
>Yes all of the treatments you will have to have may hurt, might make you
>feel worse for a while, and might have side effects but just remember
>that if you have been given a diagnosis of endo then you do have a
>problem that will most likely go on for most of your child bearing years
>so make the most of what you have.
>I know I have been very lucky to find people like Bill and Ian but I
>have taken steps to make my life better in what ever way I can.
>If anyone out there wants to talk about any of the things I have talked
>about then I am more than happy to respond.
>Keep well and Keep Happy
>
>--
>Lynn X
>
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