Monday, 6 June 2011

The next step

I had an appointment with my specialist on May 23rd.  It wasn't really good news and have put off blogging about it.  I needed time to get my head around what they told me.  I wasn't in a good place but I am moving forward and getting on with life.  What else can you do?

My appointment was at 11.15am so I went to work as normal for 8am.  It was a Monday and Monday's are, for me, just like the song manic.  I got 2 hours worth of work done which I know would make the rest of the week easier for me.  J picked me up at 10am and we drove to the hospital.  We have only ever been to this hospital once and we were taking a different route this time.  It was only a 30 minute journey at the very most so we had plenty of time. I always get nervous about being late though.  Luckily this route was easy and we made it with 30 minutes to spare even after finding somewhere to park which was no easy feat.

As we were early we had a bit of a wait.  We never go in to appt.'s on time, ever!  We got called in around noon, which isn't bad just 45 minutes late.  The downside it was not my specialist.  I probably should have insisted that I see him but I gave this female doctor a chance first.  She was actually really helpful and informative and I found out more from her that I had from anyone else.  I had a list of questions and I got answers to all of them.  They weren't necessarily the answers I was expecting to hear but at least now I know where we stand.

When I woke up from surgery I felt great.  The shoulder pain had gone and I felt amazing as seen as I had just been through a gruelling operation.  The pain came back pretty quickly I have been trying to ignore it, but, it is there.  The shoulder pain comes and goes and isn't constant so there is some improvement with that.  The back pain has also reduced but is still there from time to time.  The fatigue is as ever present as it always has been.  My cycle is heavy as usual but not quite so clotty.  The normal pelvic/ovary pain is there throughout my cycle but worse in the days leading up to the start.

Even though my surgery lasted a lot longer than I had been booked in for they had still been unable to remove everything.  My right hand side was so badly adhered they didn't touch it as they were worried about damage to my bowel.  At this appt. I found out that when they had looked in that area and assessed it they had left well enough alone as if they had tried to unstick the tissue then they would have most definitely perforated my bowel.  Bowel perforation would have meant a colostomy bag.  I am so pleased I woke up without one of those.  I was not prepared for that and if it had actually been a reality at the time I do not think I would have coped with it.  If I had advance warning that it was a high probability I would have prepared my self for it and it would not have then been a shock.

There were other areas of endometriosis that were not removed and they were also left due to the worry over my bowel.  I have a lot of bowel area stuck to places it should not be stuck.  No wonder I am always in so much pain especially when using the bathroom!   The fact that we had expressed that fertility was a major issue for us was what the doctors used during the surgery.  If we had already completed our family and no longer wanted children I am sure they would have been much more aggressive and removed everything possible.  To preserve my fertility they did what they could for now and I will be having further surgery at some point in the next few years.

I have to get through the next 12 months get to the top of that IVF waiting list and pray that we have a sucessful outcome.  I am once again playing a waiting game.  I wish we could afford to pay for treatment and just get on with things but all things come to those who wait.

1 comment:

  1. Oh sweetie, I hate this disease. Reading your post makes me hate it even more. I pray that you are not in a lot of pain. And I hope that everything goes as planned as you wait and pray.