I had my total hysterectomy on the 13th of July. Apparently it was a challenging operation due to my many adhesions from my c sections and the fact that I was 14 stone. For a couple of months after the hysterectomy it was really painful going to the loo and after eating I would be doubled over in pain. For the last week or more I am opening my bowels up to ten times a day. And I need to go urgently. I had leiomyosarcoma which was in a fibroid but I also have lymphovascular space invasion. My sarcoma consultant said that adjuvant treatment won't work so it's going to be three monthly CT scans and consultations probably for the rest of my life. It is a rare and very aggressive cancer and usually returns within the first two years after the operation to remove it. I went to the Christie hospital last Wednesday for CT scans of my lungs, abdomen and pelvis and will see the sarcoma consultant next Tuesday.
I'm worried that the cancer has spread to my bowel with all the issues I'm having. I am very anaemic and feel totally wiped out all the time. It probably isn't helped by the fact that I have fibromyalgia and non alcoholic cirrhosis of the liver.
Deb
Hi Deborino, first question no its not too much information. I am sorry to hear about all that your facing and yes its always going to be in the back of your mind about the cancer spreading. Since my hysterectomy in 2017 I have had a number of scares about possible recurrence including one that is currently under investigation I have a ct scan with contrast on my renal system next Monday as my bladder camera procedure showed up a problem with my kidneys although they seemed more concerned with my left kidney. I know deep down there is loads of reasons for the issues including and up-to cancer if I said that i wasn’t worried deep down I would be a liar, i am petrified. So for me if I have this feeling a number of times before too and it’s been ok I realised that in the end its now beyond my control but if it turned out to be cancer its been left this long because I have been fobbed off another story i will not bore you on. I am really pleased that your team is keeping a close eye on you and monitoring everything, I have to take movcol probably forever to keep things moving i did hope I could stop, I know it’s down to some slight damage to the bowel but there isn’t anything obvious to say that anything is there, I wonder if your team can do anything to reduce the pain in your bowel I know its a different issue to me as your going several times a day, i am unsure if that is a good or bad thing ,but I hope its not anything to worry about. Having friends with fibromyalgia i understand how that in itself is really draining and I know that this will make things more complicated as its hard to know what is causing what and i am sorry your so anaemic too no wonder your exhausted. I haven’t heard about non alcoholic cirrhosis of the liver before, well more in the i don’t know how it effects people but i can see how this adds to the complications of dealing with the cancer. I think it’s totally understandable to be feeling the way your feeling right now, I really hope next Tuesday that they have some good news for you even if its this is how we are going to treat it and its not that the cancer has spread, I know your going to feel nervous and worried totally understandable and I wouldn't want to lessen that. However Deb i want you to know that you have the total support from everyone here, I certainly will keep my fingers crossed for you.
Sending you some gentle bear hugs 
