Aug
11
2013

Almost There

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my little girl Lucifer who has been keeping me company on the bad days

I am in that space in sickness where time starts getting blurry.  I no longer have control of my sleep/wake cycles, sometimes the pain puts me in tears, sometimes it’s so normal I ignore it and overdo it, and sometimes I’m left so sore I feel like I did a triathlon yesterday rather than the reality of cleaning our house.  Surgery feels impending and far away at the same time.  The thought that this time a week from now I will be 3 days into my recovery feels unreal.   Yet, at the same time I feel the overwhelming urge to nest.  Have all my post surgery clothes clean, get everything into easy reach, clear the floors so I don’t trip, refill all my meds, etc, etc, etc. When I am well enough to really type (GEES in less than 2 weeks!) I have so much to say on Endometriosis.  The revelations and the horrors of late May through early July made me an unwilling expert on the subject.

Thankfully I have a good doctor now with serious cajones.  He thinks the DaVinci robots are silly, and has the expertise to do delicate, thorough, and truly minimally invasive surgery by hand.  His staff actually managed to get my surgery authorized weeks in advance, versus my last surgeon who got it the morning of and almost had to cancel.  He is seeing me on Monday for a thorough exam and ultrasound to map everything out.  He’s willing to prescribe me Visanne (Dienogest) which the US FDA is too slow and money hungry to bother approving (seriously clinical trials won’t be done until 2015!!!!).

my adhesions between my uterus and colon from my first surgery

my adhesions between my uterus and colon from my first surgery

The end of May through early July was also so traumatic that I’m not sure I can even write about it in detail yet.  The peak was the day after my last visit with my now ex gynecologist, so called endometriosis expert.  I could not stop crying the whole day, seriously had to go to my car in the middle of team meeting, after hiding in my office BAWLING, without being able to stop.  Needing a pep talk from my boss, and literally screaming and crying on my way home.  Too upset to talk coherently while emptying almost an entire box of tissues while my poor boyfriend had just my hysterics to work with, and had to hold my hand through a PCP appointment which I was last minute too much of a mess to go to myself and he had to cancel work. Why was I so upset?

My gynecologist said my bad response to Seasonale was all in my head, that my issues were all GI, would not recommend surgery, would not continue Lupron, and scheduled me so late in the month I couldn’t get a second opinion.  Once you’re off Lupron for a few weeks you run a good chance of starting the whole horrifying clinical flare all over again.  At that point I was already having severe pain, constipation, nausea at times to the point of vomiting, horrible pulling/stabbing pains near my uterus and I was 7 days away from it all going straight to hell.

In early July I seriously had to consider going on temporary disability everything was so bad, and hopeless without an end in sight.  I was sooooo incredibly ill I lost a week from work due to what is now believed to have been a partial bowel obstructions due to adhesions.  It was an absolutely horrifying time.  Worse than my freefall from my last job 5 years ago, except that this was more short lived and had a more immediate and hopeful solution.  My ex “specialist” is not going to go unscathed, I’m not into suing but I am into writing letters, patient relations, and reporting to medical and specialist boards.

Due to my experiences I have some wonderful and horrible discoveries about Endometriosis, some new myths and facts regarding treats, some unsettling realities about so-called experts, among many other things. That being said I am super excited about my adhesiolysis (removal of scar tissue), excision of any endometriosis, and my Laproscopic Supracervical Hysterectomy.  I am so glad I have a doctor who immediately went for keeping my cervix (seriously didn’t even get a chance to ask!).  There is also a lot of research showing that’s the way to go.  I’m also looking forward to the benefit of no nasty laser knives, all the tools will be metal or plastic!  A week from now I will be well into my recovery and will never need to worry about horrific periods and breakthrough bleeding ever again.  Also hopefully will really get a chance to benefit from Visanne, and get at least a few good years without any trouble from my Endometriosis.

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