For the one who asked but didn’t listen…

You asked why I was in pain over Christmas.  Obviously you didn’t understand me when I said I have endometriosis.  Endometriosis gives me pain so severe that even when I take the strongest pain medications, I still need a hot water bottle and to be left alone.  As my disease has progressed since my last surgery, the number of days I’m in agony has increased.  This time it was a full 4 days.  On a scale of 1 – 10 the pain is a 9.  I say that because it leaves me nauseated (yes even after I take the pain meds), I’m unable to find a comfortable position in bed, and I have been known to burn myself with the hot water bottle – blisters and all (so Helios’s taken charge of the hot water bottles because I cannot be trusted NOT to burn myself).

Also, my not-as-severe symptoms have been affecting me outside the time when I get my period.  If I felt like this even more regularly (i.e. when I’m not getting my period) I would be unable to work.  I would be unable to function.  I would be physically incapable of fighting for treatments that clearly aren’t up to the job.  All I do when I’m in pain is curl up in bed and rock and rock.  I’m in too much pain to cry.  I’m in too much pain to think.  When I have endometriosis pain I feel like I’m going to die.  Let me be crystal clear – the pain I was in when I was hit by a car (no broken bones) wasn’t nearly as bad as the pain I’m in during my period.  The nightmares I had following the accident weren’t nearly as bad as the dread I feel with my endometriosis!

At the moment the “best” treatment for endometriosis is running my birth control pill packs together so I have fewer periods (in the hope that it gives me less pain) and to have reasonably regular surgeries to clear the stuff out.  I am currently on a waiting list for my fourth laparoscopy and, if Christmas was anything to go by, it cannot come soon enough!  The other treatment that the doctors have recommended to me is a hysterectomy.  I’ve rejected this because, from all the things I’ve heard, it’s not a cure and certainly isn’t always effective – the endometriosis simply settles somewhere else and eats away at that – the bowel, the bladder, etc.

There is, however, a treatment that I’m keeping my eye on.  Currently endometriosis is thought of as a gynaecology problem.  There are doctors who have started to treat the disease as a pelvic disease.  This means that they don’t take the usual 30 – 45 minutes to clean out the endometriosis that they can see.  They scrape the skin of all the organs in the pelvis in order to remove every last trace of the disease.   This can take as long as 8 hours and, needless to say, doesn’t have a long track record.  I’m hoping that by the time my pain is as severe as it is now (in 2 – 3 years) the “pelvis approach” will be more prominent and I’ll try that.  In the meantime I’m coping reasonably well with the pain management I have in place now.  Well, I say I’ll try it – if it ends up being a waste of time (like everything else the idiot doctors have come up with) I’ll still have to struggle my way through with ineffective pain management and frequent surgeries.  I’m afraid if an effective treatment isn’t discovered soon I’ll have to look into something drastic that doesn’t guarantee results – like a hysterectomy.

Foxy

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2 thoughts on “For the one who asked but didn’t listen…

  1. Very well said, Foxy. I think endometriosis is one of those diseases that people just can’t understand, because they can’t see it. It’s not just bad cramps or painful periods….and it’s not easily fixed. It’s frustrating to try to explain these things to people when they won’t really hear what you’re saying. I hope that whichever treatment you use is the right one for you and that you get some great long term relief.

  2. Thanks very much Layla! I don’t like venting my frustrations but sometimes – just sometimes I wish I was able to choke some people who are in desperate need of it! I wish we all had better long term relief.
    Best,
    Foxy

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