Living with Endometriosis ~ My Personal Journey

Tag Archives: frustation

It has been the longest 3 months of my life so far. In 9 days time I get time meet with my surgeon to discuss when I will have surgery, even thou its only an appointment and no doubt I will have to wait so many months before actually having surgery its a step closer.

Let me start from the beginning. In June 2011 I was admitted into hospital due to an endo flare up that I was unable to get under control, this is where I found out that the cyst on my left pelvic wall had grown to about 5cm within 3 months and a 2nd cyst had appeared behind my uterus which was also about 5cms. The consultant who is the only one who has truly supported me on this journey came to see me and explained what was going on and recommended urgent surgery. As I am under a specialist already she faxed over to the consultant to inform of this which she gave me a copy for my records. I was discharged feeling somewhat deflated as a year after an oopherectomy I felt I was in a worse situation with my endo than I was a year ago. 

Between June and August I had an appointment with my consultant who had me referred for a scan and MRI along with blood tests as my CA125 levels were high which is common with Endo but also is a marker for cancer. Great I thought just chuck something else into the pot to worry about. In September I went back for all my results to find that the 2 cysts I already had had grown significantly, my left tube was blocked, another cyst (6cm) had developed on my right ovary along with my bowel, bladder and uterus stuck together. Out of all this this the one good piece of news was that the MDT did not feel it was cancer. It was agreed that I would be referred to and Endometriosis surgeon consultant, finally I step closer to having this all removed again and back to feeling somewhat normal. But boy I was wrong………..

In October 2012 I finally met with my surgeon and for the 1st time since being diagnosed someone sat down and talked through my condition. I found out that I have 3 out of 4 types of endometriosis, 1. endometriosis of the stomach lining, 2. Ovarian endometriosis 3. Nodule endometriosis (adhesion’s of the organs). He also explained to me the types of surgery he can do to help alleviate the pain I am experiencing. I was put on treatment for 3 months and sent away to think about my options. At this point my heart sunk, another 3 months of pain, another 3 months of fatigue, another 3 months for endo to grow and I have seen how quickly it has grown in under 2 months.

Anyhow here I am 9 days left and cannot wait to get to my appointment, It has been very difficult coping with the pain and the emotions that this has brought with it. In November 2011 I even ended up back in hospital due to endo flare up but fingers crossed this was my last admission and I have somehow managed to work through each day and survive.

I never though I would get to a point that I am eager for surgery, but my god I need it, I do not know how much longer I can go on fighting each day as I am tired and struggling each day to smile to the world.


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