A Beginner’s Guide to Endometriosis

I hadn’t heard of endometriosis until shortly before my diagnosis.  I knew a colleague had it, and I knew it made her periods difficult.  I wasn’t sure what else.  I mean, I had bad periods, but I didn’t have endo, right?

I was wrong.  Turns out I owe that colleague, because without her I wouldn’t have had a diagnosis.  (She also suggested the surgeon that caused most of my problems, but that’s another story.  I’m still grateful she got me started).

Everyone with a uterus has an endometrium.  In most people it grows where it should – nicely lining the uterus, getting shed with periods and preparing to hold a little egg that might someday turn into a human being.  In those of us with endometriosis, it does that too, for the most part.

There is also tissue very like the endometrium which grows elsewhere, where it isn’t wanted and where the body doesn’t know what to do with it.  It grows on the outside of the uterus, the fallopian tubes, the ovaries.  In some people, it ventures further afield, clambering over the bowel, the bladder, the kidneys, sometimes even the lungs.  Mine has kindly confined itself to my uterus and intestine.

Endometriosis, according to my surgeon, also changes the basic makeup of the body.  The nerves in the uterine wall grow differently in us to the way they do in other, healthier uteruses (uteri?).  What the effect of this is, science apparently isn’t quite sure.  Our peritoneal fluid (the fluid in the spaces between our organs that keeps them all lubricated and moving nicely) is also different – ours is more like a toxic swamp that helps carry the endo between our organs.

What does it look like?  That can differ from person to person.  Some people have big, obvious, blister-like lesions.  Some, like me, have tiny little freckles of endo, like a rash.  Those are hard to remove.  Some people also get the joy of big old cysts erupting from their organs, sometimes bursting and causing untold agony.  I’ve not experienced those myself, for which I am incredibly grateful.

How do you know if you have endo?  If you suffer any of these symptoms, consider asking your doctor for a referral to a gynaecologist who specialises in endometriosis:-

  1. Really heavy periods;
  2. Really long periods;
  3. Very irregular periods, or very small gaps between periods;
  4. Lots of menstrual pain, either before, during or after the period (or all three);
  5. Inability to fall pregnant;
  6. Contracting UTIs or thrush on an alarmingly regular basis.

Bear in mind, if you have endo, you may not suffer all of these symptoms.  My own symptoms were debilitating pain, 10-day periods every 2 weeks or so, and constant UTIs and thrush for no reason (although often in tandem with a period).  I have a friend who suffered only somewhat heavy periods and infertility, without any pain.  Likewise, you could have all of them and not have endometriosis.  It is still worth getting checked.

But what is abnormal pain?  I’m told that some mild discomfort is normal, but if it is interfering with your ability to live normally, then I think you should see a doctor.  If it hurts to a distracting level, if panadol and heat packs don’t help, if standing or moving around is difficult, see a doctor.  And don’t be put off by a dismissal of your pain – you have a right to see an endometriosis specialist and get a proper diagnosis.  It can be really hard to be assertive, especially as a young woman, but your health is worth standing up for.

A gynaecologist has a couple of diagnostic tools at their disposal, but the only certain diagnosis is as a result of laparoscopic surgery to actually see the lesions.  Symptoms can be an indicator, and some abnormalities will show up on an internal ultrasound (you’ll probably have to have a lot of those, which are just super super fun), but most endometriosis won’t be obvious without surgery.  Mine wasn’t.

When you do have a diagnosis, there are a couple of treatment options – medical or surgical.  My preference is 100% to explore medical first, but I must admit that that view is very much coloured by my own awful experience with surgery.  For many people surgery is great and necessary.

I’ll go more into those treatment options in future posts, as well as tips and tricks for getting through the diagnosis stage and how to tackle the problem once you know it’s there.  For now though, class dismissed.

P.S. The reason the picture at the top of this post is those lovely yellow flowers is that yellow is the symbolic colour for endometriosis, among other things.

 

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