Why I don’t talk about Endometriosis

Quote from World Endometriosis Research Foundation Website:

“Why do we never hear of endometriosis?

Even in the most “liberal” of countries, female health issues, in particular those associated with menstruation, painful intercourse and infertility, are topics that are not readily discussed in society. They are still taboo in the 21st century.

Yet, all of these are associated with endometriosis, and women who are affected have to deal with these challenges on a daily basis. Unfortunately many mistakenly believe that “pain is part of being a woman” – even though pain is the body’s way of saying: something is not right.

This lack of awareness leads to an average diagnostic delay of up to eleven years in some health care settings.

Endometriosis may be progressive, and recent research has indicated that a delayed diagnosis can be associated with more severe disease.”

Bearing in mind I have endo, why don’t I talk about endometriosis?  Part of the reason I don’t is because I don’t want to seem weak at work.  I’ve managed to control my symptoms enough that I’ve not needed a day off work due to endo in over 2 years.  Due to the fact that I started a new job in Jan 2010, I didn’t want to start work by saying “Oh, and I’ll probably need time off every cycle due to pain.”  If you had the choice of hiring someone with or without medical problems – you’d probably hire the one without, right?  It’s only natural.  I therefore spent the first year at my current work not mentioning my symptoms or chronic illnesses to anyone.  I would say it was a lonely year but the people are so helpful and supportive that I found myself desperate to mention it. Bearing in mind I’ve not had an awful lot of time off, my boss has been supportive!  They’re more concerned about my well-being and health than how many days I am in the office.  (Of course I’ve not had many days off at all last year – just 5 days and 4 of those were due to flu.)  It’s a refreshing change to every other place I’ve worked!  I mention work in particular because we work for so much of our adult lives that it’s the first place I considered when I thinking about this question.  All the friends I have in this country I met at work.

My close friends know I have endo but even they don’t know all the different endo issues I have: this includes the occasional rectal bleeding, burns from the hot water bottle, how much blood I lose and how my condition is currently progressing (regressing?).  During my most recent cycle I lost two days to pain – luckily over the weekend so no work time lost, but it won’t take long before the pain becomes an issue for work – for me, endo only gets worse.  I’ve had three surgeries and the third was by far the best job.  Unfortunately, I’ll need another surgery to clean out the endo again – probably within the next 12 – 18 months.  Knowing me, I’ll try to avoid another surgery for as long as I dare – partly because I don’t like hospitals, and partly because I don’t like to give in and ask for help.  I don’t like to think that anything is stronger than me.  Just ask Mom how stubborn I can be!

In an effort to be more open, and as part of Endo Awareness Month I (as myself) mentioned the endometriosis on my Facebook page.  Apollo happened to notice and I felt very embarrassed.  I didn’t want to discuss it with him.  While I know I shouldn’t feel embarrassed, I want to appear strong to him and so didn’t go into much detail.  Bless him, he simply replied.  “OK.  I’m aware.”  Which was more than I could have expected him to do.

My next appointment with the Gynaecologist is on Wednesday.  My list of things to discuss include: burning pain in my right ovary, endometriosis symptoms worsening (between 8-9 on the Mankoski pain scale for the two days of this cycle), rectal bleeding and I’ve made a note that my most recent period started on 19th March.  I will say I’m growing steadily more nervous about the appointment.  I’m not so worried about the biopsy – I know it will be painful but a biopsy isn’t as bad as my life could get, in the grand scheme of things.  No.  I’m worried about what they’ll find under all the other things that other doctors have left in there.  My only consolation so far is that they seem to have me coming in regularly enough so if they do find something remotely scary, they can easily deal with it quickly.  Fingers crossed!

Foxy

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2 thoughts on “Why I don’t talk about Endometriosis

  1. Sending you strength and lots of hugs. I know the anxiety of waiting and not knowing but I’m sure once you get all of your answers and have a plan for how to move forward, you’ll start to feel less anxious. And if not, we’re all here for you to help you through it! 🙂

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