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Long Term gets longerFrom: Lynn (anonymous@obgyn.net)Wed Jul 30 19:22:09 2008
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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