Thanks for all your kind words ladies.
I do have one question though, I've seen ladies talk about different stages of endo... I've never heard of that. Can you point me to a website or something where I can read up on the different levels of endo?
Thanks for all your kind words ladies.
I do have one question though, I've seen ladies talk about different stages of endo... I've never heard of that. Can you point me to a website or something where I can read up on the different levels of endo?
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Hi Penny,
I just saw your post and can relate to what you have been through. I have only just been diagnosed this year in May with endo when I had a lap ( exploritory surgery) it was only then that they found that I more than likely have had endo my who teenage and adult life. I had suffered many of the symptons that you have described but basically it was brushed off and written off to other things and endo was not considered. I get the impression that alot of local GP's have not had alot of experience with this often silent disease and so often look to other causes.... Also there are alot more male GPs and they proberly often dont have alot of first had experience with the disease unless a close family member has it. In most cases they just send you off to the gyno for them to sort womens problems out....
After having my first Lap in May 07 - If I was not TCC my local specialist would have been happy to do a full hystorectomy. Definately not my choice. I am scheduled to have surgery in just over three weeks time - they will be doing this by excisional surgery.
My best advice to you is get yourself a really reputable surgeon who it up to date with the latest treatments - as this can make all the difference. In my case my first surgeon stated the best he could do for me was a complete hystorectomy but he knew I was TCC and so then refered me onto my current surgeon who is very confident that he will be able to preserve fertility. I am having to travel to have my surgery done but its a small price to pay. I am just very greatful that I was refered to such a gifted surgeon.
Penny you have one big thing going for you that I don't .... and that is your age..... I am really glad you have identified what is more than likely the cause and your taking such a proactive approach as this may make all the difference when TCC.
In answer to your question about different stages of endo there is a scale but my new surgeon indicated that most don't use it these days and usually just use terms such as "Significant Endometriosis with bowel involvement and cul de sac obliteration". This is because the impact and effects of endo can vary so greatly from patient to patient. I must admit I was alot like you when I found out I had very sever endo that I wanted to know what stage I was at because I had others refer to it this way. For me mine I have been told it is equivelent to a stage 5 endo.
You are best speaking to your specialist as they will be able to give you the best idea of what degree of endo you have. Also I have been made aware that some patients may have very little endo but experience extreme crippling pain where as someone such as my self may have the occasional bout of sever crippling pain but on the whole can funtion normally most of the time. I am lead to believe this is because some peoples nerve endings are much more sensitive in the abdominal and reproductive organs than others. With me my greatest demon with endo is infertility and also fatigue. I am constantly tired and lacking energy. Some days I have to drag my backside out of bed to get to work.... I am hoping that with the surgery will come increased energy levels and I may feel like a new person......
Well anyway I wish you all the best with getting a diagnosis and then if found to have endo the management of it and TCC. There are a bunch of wonderful ladies on this forum all at different stages of their treatment who are happy and willing to share their stories with you. Also there are some good Australian websites that have some detailed info on endo - one site I have found is ECCA (endometriosis care centre Australia) That has all sorts of info regarding endo in an easy to read format.
Well thats all for now. Let us know how your travelling
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