Wednesday, March 13, 2013

Diagnosis endometriosis: one year on

My mum and I, four days before I was diagnosed with endometriosis (at WOMAD!
Today marks one year since the laparoscopic surgery where I was diagnosed with stage III endometriosis. It feels like it an eternity. I feel like a completely different person to who I was a year ago. Back then I thought the surgery would fix me and "cure" me of endometriosis, and that it would only take me a week to recover. To say the least, I have learnt a lot since then.

My heart goes out to all the women and girls out there that learn today that they have endometriosis. I pray that they have comfort in the knowledge that there is a name for what they have been feeling, and there are some treatments that may help. I hope they also find comfort in all the other women out there, particularly on the internet (check out my blog roll on the side bar), who know exactly what you are going through and wish only the best for you. Let's not drag each other down with negative comments and criticisms, but support each other instead. We know most intimately what each other needs anyway.

If I could tell my freshly diagnosed self anything I would say:

  • Trust your body, and don't let any surgeon or doctor convince you not to. Only you know what you are feeling. On that note, ditch your gyne and GP now - there are much better doctors in your future.
  • You are not alone. Do not underestimate what meeting other women with endometriosis will do for your sanity. Blogs and facebook support groups are pretty awesome too. Your family is pretty helpful too!
  • Don't be too hard on yourself.
  • Let yourself grieve. Books help.
  • You might not be able to have kids, but that's ok, you might too. Better to make peace with it now either way.
  • The pain won't completely go away, and it will be difficult to adjust to the fact that you are most likely stuck with this disease forever (or at least menopause), but at least you know what you're fighting against now, and that is valuable knowledge.
  • If people don't make the effort to be there for you as much as you are for them (on the whole), they're not worth it. Your time is precious, even more precious than it was when you were healthier. Use it wisely. Don't invest in things that don't give you a return.
  • Oh yeah, and listen to Clare Bowditch. She makes everything better.

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