Brains....

Some days I think I am part of a very surreal comedy that I wasn't aware I had auditioned for.

Aside from the fact that my knowledge of the hospitals (and car parking charges of those hospitals) of Cheshire is increasing on a weekly basis, the silliness that I seem to encounter makes me smile, but only because of the absurdity of it all.

3 years ago, around this time, I had a laparoscopy that finally confirmed I wasn't going mad.  That my pain was real.  In March 2013, I had major surgery, hysterectomy, excision of extensive endometriosis and resultant scar tissue.  Left with one ovary.  I thought I would get my life back.

Not 6 months after that, the pain started to return.  Had to be re-referred in order to get back into the queue, at the back of it.  Further consultations led to management strategy that involved something called decapeptyl, injected once a month for 3 months, to force me into a chemically induced menopause to see if that got rid of the pain.  No it didn't, but the side effects were more than I could bear.  After a melt down of epic proportions, I saw my consultant again, took Corin with me, and I ended up rescheduled for surgery.  Last October (again, about this time).

The surgery was not done by my consultant.  It was completed by another surgeon, not one who was an expert in endometriosis (by her own admission).  Her bedside manner lacked grace or understanding.  She found more endo and scar tissue (but, in the words of the none expert "not enough to be causing you pain")

Since then, pain management consultant has had me on a cocktail of drugs to manage neuropathic pain.  I have, at times, felt like no one is taking me seriously.  Except for my GP.  My wonderful GP who has thrown the book at this.  

Over the last few months, complications seem to have started arising.  Racing heart.  Very low blood pressure.  Dizziness.  Forgetfulness.  More recently, 'absences' where I know that I have just lost a few seconds here and there.  Blinding, sudden onset headaches, that disappear as quickly as they start.  Pain under my ribs in what feels like is probably my lungs.  The other pain, the stuff that has been with me for years...that has escalated so much in the last few months as well.  It's like I am back to square one, but with bonus symptoms.

Are these all linked, or are they newly developed and separate issues?  Are they are result of the long term use of medication or are they immune system responses to the growth that was discovered in my abdomen 7 weeks ago when a scan was done on my kidneys and bladder.  A growth that is on that one ovary.  That one solitary toxic ovary that has continued to flood my body with the very hormones that this awful disease needs to grow and thrive.

So, today was a Head CT... the results of which I won't know for 2 weeks.  I was fortunate to get the scan, as I was informed when I arrived at the hospital that the scanner broke that morning.  Fortunately, a highly unlikely looking engineer wandered in - with a small and odd array of tools, but no toolbag / case or anything else - and in a short amount of time rendered the CT scanner fixed.  Corin reckons he either kicked it, or turned it off and back on again.

Tomorrow I see my consultant.  I will probably have to have another internal scan, because it won't be sufficient to have the report from the sonographer who did the scan 7 weeks ago.  Largely because they will need to know whether the growth has grown.  

I will be leaving the hospital tomorrow with a plan, no matter how long it takes and how much fuss I have to make.  The saddest thing is that it's actually been going on for so much longer than the 3 years from my first consultant appointment.  I just didn't realise how hard I would have to fight and how loud I would have to shout.

My apologies for being self absorbed in articulating all of this.  I am feeling very, very tired and frazzled.  I just want to be fixed.