Endometriosis

I decided something this morning whilst writing a reply to one of my friends. She was asking what I meant by "my endo" because, as usual, when talking about how I was feeling I gave such vague replies. My supervisor at work seems to have clued on to how I am very quickly - now when he sees me looking ill and asks how I am, although my response is my usual "I'm fine" he just looks at me in a way which tells me he *knows* I am not fine and I better darn well admit it. It's quite amusing really - and if it wasn't so deeply part of my personality to respond with "I'm fine" I'd have stopped even trying to hide how I feel.


But in my experience as soon as I mention I am feeling rough because of my periods people just don't want to know - so it's been easier to just not tell them I feel ill at all. My supervisor knows that the reason I feel so rough a lot of the time is my periods but he doesn't actually want to know the details of what is wrong just that I am feeling ill. Even my female friends have been known to "tut", roll their eyes or even say "cheer up, you're so miserable" when I've told them I was having my period.

Which is why, when I had to face something recently related to this (well the whole year has been related to it but in particular these past couple of months) I decided to start a private blog because I didn't want this one to become a "moan-fest" or rather worry about turning my readers away because of period-related posts. But that always felt a bit half-hearted - like I was denying that this part of me existed. And I suddenly realised this morning, when worrying about mentioning my endo online, that why should it matter that other people don't want to know? They often respond with a roll of their eyes because they think I'm just being a wuss and to be fair I've never actually done that much to prove them otherwise because I've never explained what is actually going on.

So I've decided to come out of the closet (so to speak) and blog about my Endometriosis.

I don't want to make this a long and boring post, so let me give you a few highlighted details:

• Endometriosis (or endo for short) is a condition in which cells that normally grow in the womb grow outside of the womb, grow and bleed, causing adhesions and scarring. These tumours or implants are most often found around other reproductive organs like the ovaries and fallopian tubes but can sometimes be found as far up at the lungs and shoulders.
• It affects far more women than you'd expect and doctors have no idea what really causes it. It is uncommon to be diagnosed with it younger than your mid-twenties (I had to fight to have mine diagnosed at 21 having started to complain to doctors at 15!). Endometriosis has been found in girls as young as 9 and yet doctors still refuse to acknowledge this.
• There is no cure for Endometriosis, only treatment. This ranges from contraceptive pills to regulat the growth of the cells to surgery to either take away the adhesions or even remove the reproductive organs.
• Endometriosis is a major cause of infertility and although it can be excrutiatingly painful for some women, others can be riddled with it and have no idea until they start tryin for children and cannot fall pregnant at which point surgery diagnoses it.

That's just a brief overview. Doctors really are quite dismissive of this condition - I have always had problem periods right from the age of 13 and at 19 when finally seeing my first gynaecologist I was told in no uncertain terms that I as "young, healthy, sexually inactive and had always had problems so it must just be the way you are - take some painkillers and get on with it". I left his room in floods of tears, my mum in a rage because when she had pointed out that she had had to have a hysetrectomy at 36 due to endometriosis she was told "oh too many women are diagnosed with that!" It makes me so angry thinking of this man now.

At 21, after suffering in silence for too long and being stuck in bed with such unbearable pain for up to 8 hours solid and wishing I could die just to make it stop I finally built up the courage to try again. I wrote out all my symptoms, with diagrams, and made them pay attention to me. They were still 98% sure nothing was wrong but agreed to do a laparoscopy to see. Turns out I did have endo and it had stuck my fallopian tube to my ovary (which was also enlarged)... and they thought nothing was wrong with me!! They fitted me with a hormonal coil and after 3 months of agony things settled down. I had no bleeding or pain for 2 whole years...

Then in 2007 things started happening - bits of blood and pain began to creep in. After yet another battle with the doctors to get them to pay attention (and having to pay hundreds of pounds to go to Bupa to get a specialist opinion) they finally referred me again to see a gynaecologist. After talks, tests and scans they decided the endo must be growing back and the coil was not enough anymore. But they didn't want to risk another laparoscopy just yet because of the extra scarring it would leave. So they started me on a chemically-induced moenopause.

That's right - at the age of 24 I was going to be going through the same thing as my mother!! I expected the hot flushes and mood swings. I started my private blog because I wasn't ready to share this information with the whole blog world. But then things went wrong... I reacted so badly. I couldn't eat, I couldn't sleep, I was psychotic and paranoid, I would stand in the shower and have no energy to wash myself or even get out of the shower when the water turned cold. I was barely functioning and we had to stop.

This all happened end of October and most of November. Since stopping the injections I have slept better but feel so weak. I am still emotional - in fact the whole of Christmas all the emotions I didn't let myself feel before came flooding out. I was miserable. What a way to spend Christmas. And always having to put on a smile for the world...

I decided to be happy - what is the point in wallowing. I have wallowed for too many years and it does me no good. I have also had times when I have actively chosen to be positive and look at the good things in my life. This is why, when asked on Cherry's forum what my word for 2009 will be it was Gratitude! I am going to be grateful for all I have. I am also not going to keep this a secret anymore.

I have endometriosis and it makes my life hell - but it is not who I am, just a part of me. And in order to be positive about this I have to accept it and that means letting people know, no matter what their reaction may be!