ENDO-WHATNOW?

A little over a month ago I had to leave work early. I was doubled over in pain at my desk. I made it to a meeting room without raising any eyebrows and phoned 111 with my symptoms and got told to go to the docs in the next few hours.  

The pain was in my left groin and shot like lightening up into my stomach. I was due on my period but had never experienced pain like this before. It wasn’t constant, came in horrible unpredictable waves and when it did it stopped me breathing for a moment.

The doctor made me do a pregnancy test and even though it was negative he was very concerned I was experiencing an ectopic pregnancy so told me to go to A&E.

A&E was the usual shenanigans – picture an utterly inebriated lady literally ricocheting off the waiting room chairs with a lighter caught in her matted red hair ready to waste our good doctors and nurses time and genuinely unfortunate people with visible cuts and wounds. And then there was me. Apart from pain etched across my face every few minutes, I looked normal. I wonder if people thought ‘there’s nothing wrong with her!’

More urine samples and blood tests get taken over the next 7 hours. No scans or anything. Just ‘nope, we don’t think it’s ectopic so here’s some painkillers’. And the suggestion that I see a gynaecologist.

Over the next week I get in to have a vaginal (soz) ultrasound at the same hospital and have an internal (oh goodygumdrops) back at my doctors. The GP says my left ovary feels enlarged. I start to freak. Firstly because did he really go up that fucking far? And secondly WHAT THE HELL IS WRONG WITH MY LEFT OVARY. During the scan at the hospital the doctor says he can’t see anything untoward but a possible cyst. He sends the report to my GP.

A few more days go by and I’m woken up at 3am on a weekday morning with a constant, no-let-up burn in my pelvis. It’s intense. I’m not one to easily give in to pain but I rolled to my left and it intensified, rolled on my back and the pain didn’t ease and on my right I wanted to stab someone and the nearest poor soul was my husband. So I phoned 111 again. I’m on the phone crying to the poor sod on the other end ‘it hurts down beloooooow’. We talk for a bit, I answer all the questions. He gets advice from his senior. He tells me to go to A&E but after an hour it starts to gradually subside and I get back to an uncomfortable, restless sleep before getting up at 6.30am for work and a day full of meetings.

So this all culminates in me getting in to see a specialist consultant. I get a letter saying my first visit would simply consist of seeing a specialist nurse and that my second visit will be to see the main man himself. But noooooo. We turn up, I get weighed and we get ushered in to a room where the consultant and two nurses are waiting. I feel scared.

It dawns on me that there’s a bed and one of those vag scan machines all set up. Noooooo. The letter mentioned nothing of this! Firstly I haven’t shaved my fucking legs. AND I only instant fake tanned the bottom half of my legs because, well, who the Christ fake tans everything these days? So I look like I’m wearing orange socks. Good one. (I’ve decided to give up tanning since. I’m embracing the pale.)

The scan is beyond uncomfortable. The consultant is driving but he is also seemingly teaching a nurse how to do it too. He talks me through what he sees as he prods around and I’m hanging on to his every word. 

“Your right ovary is a little shy” – sorry WHAT NOW? He can’t find my right ovary. He softens the blow with “but your uterus lining is very very good” – that’s great, now about that right ovary…

He’s a very lovely man, calm, smiley and reassuring. And an expert. 

He concludes that the pain l’m experiencing is likely to be endometriosis. A condition I’ve heard of, considered that I had a while back via some self diagnosis but brushed off because I didn’t want it. Among other things like long term chronic pain, it can effect fertility. So no thank you, not today thanks.

He says the word and without thinking I mutter ‘oh god no’ and look at my husband who has no idea what it is going on.

The consultant then talks through his no bullshit plan of action. He’s going to operate.  A laparoscopy and a hysteroscopy. Plus a dye test for my Fallopian tubes. Basically keyhole surgery through 3 points in my tum to see what the hell is going on in there, to confirm endometriosis and if found, to burn it off. He’ll also remove cysts while he’s there too. A real one stop shop. My kinda gig.

He talks and I don’t realise it, but I’m crying. 

Endometriosis effects 1 in 10 women. 176 million women worldwide.  In a nutshell it’s when the lining of your uterus (aka womb) decides to be a total arse and ups sticks to settle wherever it damn well wants to in a woman’s abdomen forming bleeding lesions and leaving scar tissue in its wake that can cause excruciating pain. It can be found on the ovaries, fallopian tubes, the pelvic side wall, bowel, bladder and has been reported as far up as the lungs and brain. When a woman has a period, these wandering bits of crap start bleeding too but of course, there’s no way for this internal bleeding to leave the body. So it just builds up and leads to chronic pain and inflammation throughout a woman’s cycle.

And here’s the small print; there’s no cure. And no one knows why it starts. Soz.

On average it takes 7-10 years to get a thorough diagnosis as the only way to be sure is via surgery. 7 – 10 YEARS. How on earth is that acceptable? Why should women (and bloody girls for that matter) be subjected to an ongoing dose of hell to be told or to think that it’s normal. A big problem I believe is that woman just don’t question the pain enough. We’re told that our periods will hurt, it’s drummed into us so we expect and accept it. There are special pain killers just for period pain in all good chemists so ‘suck it up females. Your body is just doing what it’s designed to do. Have some chocolate or something. Just please stop moaning and saying the P word, it’s gross’.

The financial cost to the world of endometriosis is similar to that of diabetes, a condition we all know something about because it is so widely reported on but in contrast, endometriosis just isn’t. Maybe because it’s to do with ‘down there’ but I sincerely hope not.

Looking back, I’ve often not gone to events/get togethers because of my time of the month. It used to upset my stomach and make me feel generally wretched for at least the first two days. I used to look at my calendar to see if a big event like a wedding would coincide with when I would be due on and try and fathom out a coping plan. I’ve also been told since I was 22 (i’m 34 now) that I likely had IBS due to a copious amount of medication I was given when I was 20 for acne conglobata; from Roaccutane to steroids to antibiotics. An ongoing concoction that the doctors said had probably damaged the lining of my stomach. Knowing what I know now, this could actually have also been signs of early endo and a misdiagnosis all along. 

So it’s at this point I urge all ladies out there who have any of the below symptoms to stop and have a think. Is it not least worth a chat with your GP? And if you do, be persistent. Get second opinions. Get specialist advice. And if possible, get the surgery. It’s better to rule it out that to go on suffering…

  • Painful, heavy, or irregular periods
  • Pain during or after sex
  • Infertility
  • Painful bowel movements or bleeding from the bowel
  • Fatigue
  • Pain on ovulation
  • Leg pain
  • Back pain
  • Pelvic pain
  • Pain when weeing
  • Depression

And men. If the lady in your life complains of pains, please listen. Like really listen. Don’t jump to conclusions. Don’t mock. Don’t ignore. Do some research of your own to help you understand what could be going on in that sacred part of her body. She might be dealing with what feels like a gaggle of out of control sea urchins tumbling around in her insides, scratching and dragging her bits around sometimes to the point of blacking out.

Next up…the surgery.

Vx

Read more about Endometriosis: www.endometriosis-uk.org

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One response to “ENDO-WHATNOW?”

  1. […] pain within. In freeing my right ovary (remember, the one that couldn’t be seen via the vag scan? See earlier post) tons of blood was released and removed. In one pic below, you can literally see where one ovary […]

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