Friday the 13th – You have Endometriosis

I’m not superstitious at all, but it just so happened that I wrote this on Friday 13th.  In the weeks leading up to seeing the consultant on 12th January 2017, I had this sinking feeling about the whole experience.  Worry, resignation.  Maybe it was because I just ‘felt’ like something was going to be wrong even before I went, like I knew inside my body. Maybe because when I looked up endometrioma, I failed to realise that it was part of a long term chronic condition, endometriosis.  Yeah, there was a link, but it just didn’t dawn on me that the problem was more widespread than these little cysts – and they could be chopped off, right?  Turns out it’s not that simple.  Somehow I steeled myself to try and ‘convince’ the doctor that I really was in pain.  But he was ahead of me by quite some way.  I thought that I was going to discuss how they were going to fix me, not to find out that there was a far more sinister explanation.

It came as a shock to hear the doctor say he thinks I have advanced endometriosis.  When the doctor explained that even surgery is only a temporary fix, it took a while for that message to hit home.  Endometriosis is a chronic condition that will get worse over time – and only stops when a woman reaches the menopause. Average age for menopause is 52, so that’s 14 years of chronic pain to look forward to.  All my symptoms suggested advanced endometriosis.  Was this even really happening?

So I have a condition.  That feels strange.  It isn’t something I can diet out, work out or exercise out.  More like just get used to passing out.  I have to somehow figure out how to manage my pain and my condition for the foreseeable future.  It was strange when I realised the other day that I’ll be 40 next year.  What sort of life can I plan for when I have to factor in chronic pain?  How does this alter my perspective, my feelings and my plans?  What were even my plans?

Reading other women’s stories makes me realise a few things:

  • That this is chronic
  • That pain management is going to be a way of life
  • That it will probably continue to get worse
  • That some of the jobs I like, such as training and travelling for work, may not happen, or may be very difficult
  • Fatigue is going to be a way of life – there isn’t a simple fix for this. It might happen some days and others, it might not. I’m going to have to factor this into my life, and learn how to exist with other people who don’t have to factor in pain.

How will endometriosis affect my relationship?

My partner is so positive, and I hate to give him news that is not positive. I feel like I’ve done that quite a lot lately, but with him, I have a commitment to telling the truth. There is just no such thing as me not telling him the truth. I have mostly been crying because I am worried that he won’t want to be with me anymore. I have a huge anxiety that he’ll bail out on me because of it – I have a track record of fellas upping and leaving when something else goes wrong.  Of course, that doesn’t have to happen, and knowing what he’s like, he’s probably unlikely to up and leave me because of me getting a diagnosis, but even the mere hint of the notion of not being with him sends me into a fit of hysterical sobbing.

I am worried though because I love him and I see a future with him.  My future just got thrown into disarray, so it scares me that, in turn, our future might change too.

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