new member uk

From: Kath Findlay (klfindlay@yahoo.co.uk)
Tue Oct 3 17:57:02 2000


Hi My name is Kath,

I am from Scotland, UK. I put my name on your quilt a few weeks ago. My husband had found your sight the night before we went on holiday to the USA, so my message was quite rushed. When I got back last weekend, I had received over 300 e mails. Like most of you I felt that I was very alone. Adhesions are not a recognised problem in this country and I strongly believe that there are thousands of people here suffering alone. I had quite a traumatic time getting Doctors to believe that it was my adhesions that were at the route of my pain. My local Doc is very sympathetic to me. I think he feels as helpless as I do. He has known me for many years and watched me go from being a very busy business woman to being an invalid. He fought very hard to find a surgeon willing to take the risk of operating on me in Feb 98. I think they are afraid that you will hold them responsible if your adhesions return. I have re written my story for your quilt in the hope that I can help others who might find themselves in a similar situation. I am afraid it is a bit like the book war and piece, as it spans thirty years of my life. I really appreciated your letters. I learnt quite a lot. At the moment I am taking morphine for the pain, but I am very interested in the Fentanyl patches that some of you are using. I was also pleased to know the names of your of your two special doctors. I just wish I had known them before my trip to USA. I feel that I can identify with a lot of the things that you have mentioned.

Zoe, I read your letter and I think I would follow the advice you received from Karla. I had two babies while having severe adhesions. Don't give up its worth it in the end. Just don't let them talk you into a hysterectomy to cure your adhesions, without getting a second opinion, or ten. You said in your letter that your doc gave you information about barriers, I would be interested to know what. When I had my last op in 98, I asked about gortex, which was all that I had heard of at the time and he said that my body would probably reject it. Since then I have heard a little about intergel. If you or anyone out there can tell me what barriers are being offered and if they work I would appreciate it. Thanks, I wish you Good luck !

Beverly, I love your sense of humour I think when you are feeling down its good to laugh and you help to make people forget their pain for a little while. I wanted to ask you if your adhesiolysis procedure that you had in 95, was done by laparoscope's, and was it done by a different Doc to your one in 99. My last three separations were all done by open surgery. The first one gave me 4 years pain free. The second gave me almost 3 years and the last one,1 month. They were all performed by different docs. The last one was performed by a bladder specialist, neither of the other two would risk performing it again. They said that the chances of it returning was extremely high. I felt that I would rather have 2 or 3 years pain free than 10 to 20 years in pain. I will have one last separation but not until I have gathered enough information, so that I can be in control of the outcome not a lot of inexperienced docs using me for experiments.

A little bit about myself, you are probably thinking that I have said enough already. Sorry, just thought it would help to know what I am like as a person. I hope some of you will return a story about yourselves. I am 49 years old. I have been married to Dave for 31 years. I have 2 children, Kris who will be 21 on Christmas eve and jemma who was 17 yrs past July. They are both away at university in Edinburgh which is a 4hr drive away. For the past 12 yrs we lived in a lovely Victorian house where we ran bed & breakfast, it was my pride and joy. I also ran an au-pair agency, so you can see, I was a very active person. This disease has turned our lives upside down as I am sure a lot of you are in the same position. We have had to move to a much smaller house. My husband also had a very good job that he had to give up to look after me. Most days I get up at about 10am. David does all of the shopping and all household chores. I don't know how I would manage without him. I like to paint, read, write on my laptop, you've guessed! but most of all I like to work on my dolls house. I am able to drive the car short distances and I can only walk short distances. I am just getting used to being in a wheelchair, and although I am not as bad as Karla, I feel for her frustration. I worry about the uncertainty of the future and how much more pain I can stand. I worry about the damage being done to my body taking long term medication. No one seems to know much about this disease. Some won't even believe it exist. I have so many questions that no one here in the UK seems to be able to answer. I don't feel so alone and helpless, now that I know that there are people out there who understand how I feel. I hope i can be of help to some of you.

Thank you all for listening, now that I have got all this out, I will keep it short next time. Karla, I wish I could say something to make you feel better. I feel there are a lot off people out there who care about you and will miss your chat. In the short time I am with you, you have touched my heart. I hope you will be back to chat soon as I think your knowledge will be very valuable to others. I believe we will be running about like Bev one day. Its just not our turn yet. Love to you all Kath


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