Late last year I had a small amount of bleeding. I was seen by a consultant from gynaecology and booked in for an hystoscopy under general anaesthetic. I cannot tolerate any vaginal investigation due to abuse I had only recently been able to remember through therapy. The lining of my uterus is very thick, I can’t remember the name for it! But it put me at higher risk of developing cancer, along with my weight. At that time there was no cancer found, but there was something which to be honest I didn’t totally understand. I was on my own at the follow up appointment, my friend had come with me but after 40 minutes driving round the car park we couldn’t find anywhere so I had to go on my own.
I was offered hysterectomy or having a coil fitted. I have two adopted children who both have additional needs. In spite of being in their 20s both are more very reliant on me, both physically and emotionally. At that time both were about to move accommodation. Both are in supported living. So it was decided to try the coil. I had that fitted under general anaesthetic and another biopsy was taken.
The biopsy came back clear and I had a follow up 4 months later. That appointment was awful. I had to have another scan and the nurse was really unpleasant. Initially she wanted to do an internal scan, which I refused as I cannot tolerate that. She looked at me in amazement and asked if I was a virgin. That was bad enough but then when doing the scan she was sighing and saying this is too difficult and even said to me I had to hold that-indicating my stomach-out of the way. She was unable to see anything and sent me off to drink. Thankfully it was a different nurse who called me back. I then had to see a member of the gynaecology team and was told I needed another hystoscopy, they needed at least 2 clear biopsy’s I think. She then started to book me in to the clinic and could not understand that I needed the procedure done under general anaesthetic. She was saying it was such a risk at my weight and would only take a few minutes etc. Thankfully I had someone with me this time.
So I had another procedure with biopsy, and had a new coil fitted as the original was not sitting in the right place. One month later and I was called back to the clinic. I knew that meant they had found something, although friends tried to say it was probably just routine and the consultant was going to discharge me.
The biopsy showed pre cancer merging into stage 1 cancer. The coil did not seem to be doing anything after 6 months. I could continue with the coil for longer or opt for hysterectomy. However as I have poor functionality in my kidneys and liver, as well as being overweight, there is a question mark over whether or not I can have a general anaesthetic. I won’t know till my pre op in October. I go from being fine to being a mess in seconds. I don’t know how to tell my girls. The younger one is very difficult.
how do people cope?
Hi Nina60, welcome, and you know what well done you for coping and keeping going and getting everything checked out and coming back again and again with what your saying about abuse you have suffered it shown a lot of strength and how dare that nurse talk to you like that! Obviously those there is always a risk with general anesthetic and risk factors are always discussed, like being overweight, drinking and smoking,there are a few bigger ladies here who have been successfully treated who have had hysterectomy with abdominal cut so it can be done.
Telling family members can be hard and like so many things what works for one may not another, but usually its being able to start the conversion that's hard. I didn't exactly tell my parents as I wanted too, we had had the horse put down earlier in the week, Mum was with me and my Dad picked me up from the hospital we were going to a local disability place for a drink so planned to tell him there, but he asked as soon as I got in the car and I just blurted it out "well its not good news its cancer" not at all as I wanted but once I said it I felt the weight lift from my shoulders sometimes that's the hardest part. I realise its slightly different with your children even though older may find it harder to cope with because they are still your children no matter their ages or that they are adopted.
Hopefully your pre op in October can give you a better understanding of what's going to happen with you as treatment seems so individual but lots of ladies here, lots of knowledge from experience but willing to share. I am 40 now but was diagnosed in June 2017 low stage 1a grade 2 but only a hysterectomy as treatment.
Sending you a big hug
_GBear Xxxx
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