Endometriosis and Me

Endometriosis. A fucker of a disease that makes you infertile, while giving you the appearance of being six months pregnant.

When I was awarded a Get a Life Fund, the only stipulation was that I must write a blog. I’m good with that, it’s a small (and enjoyable) price to pay. Although writing about a medical condition was not something I ever envisaged doing, my life, and therefore my journey, has taken a rather all consuming turn, and so it seems appropriate to post a blog about it before I continue on to my next adventure.

 

I went to the Doctors in March. Peri-menopausal? Probably, I thought.

The GP was lovely (but way too young to be a doctor). She said she needed to take a few standard swabs to rule out STI’s, this would be followed by blood tests (and possibly other things, I forget, we never got that far).

I can safely say what she did next was EXCRUCIATINGLY painful. Just to clarify, I did seventeen hours in labour without any pain killers, I always assume my pain threshold is ok. She told me she wasn’t sure why it was so painful, but she could see ‘scarring’ that she didn’t think should be there. She thought I should see a Gynaecologist.

I left the surgery devastated. It was the word ‘scarring’.

The same week George was born, a woman (who was to become a mum friend) had a C-Section in the same hospital as me. But hers was fucked up and she was she was left unable to conceive further children (Ashermans Syndrome).
We had tried to provide George with a sibling for nine years, to no avail, bar one extremely messy, painful, fucked up miscarriage (see blog post ‘I know how this show goes’).
I knew Ashermans had something to do with scarring, so my head made the connection that there was a chance my inability to conceive was to do with a third party’s incompetence and this connection abruptly sent me into a state of shock. I was a mess.

 

I was referred to hospital for various camera activities, ultrasound scans and an MRI scan (I’ve a lot to say about this, but will keep it brief for now), and consequently a biopsy under general anaesthetic.

I went to collect the results in August. My consultant quickly, without much explanation, without much care, without anything much, told me I had Endometriosis. He said it was ‘severe and deep seated’. He said surgery would be too complicated. He said we would be talking colostomy bags. He said it would be best to just take drugs to put me into a state of menopause. He said I could have time to think and then come back in four weeks to talk about what I wanted to do.
He said I had to take the drugs? What was I supposed to be thinking about?

Endometriosis:

“Endometriosis is a medical condition that affects millions of women worldwide. It is a highly prevalent, high cost, high impact disease with an embarrassingly low profile in the public domain. Women with endometriosis continue to endure years of diagnostic delay, misunderstanding by the medical profession, and sub-optimal and ineffective treatments, resulting in a life of chronic pain and debilitation.” endopaedia.info

“Endometriosis is when tissue that somewhat resembles the lining of the womb (endometrium) is found outside the womb … Endometriosis comes in many shapes and forms and has common patterns of occurrence within the pelvis. Very occasionally endometriosis can occur in other parts of the body, such as in the belly button, lung, and brain … The main symptom of endometriosis is chronic pelvic pain … Endometriosis represents one of the most common human diseases on the face of the earth.” endopaedia.info

“The endometriosis symptoms can vary in intensity from one woman to another, and the amount of endometriosis does not always correspond to the amount of pain and discomfort experienced. Some women with endometriosis experience symptoms while others do not.
The classic endometriosis symptoms include painful, heavy, or irregular periods, pain during or after sex, infertility, painful bowel movements and fatigue.” endometriosis-uk.org

“Months after you’ve started to get used to chronic pains effect on your body, another handicap rolls in. The exhausting shadow that is chronic fatigue.” endohope.org

 

Suddenly everything slides into place, and it feels rather like my past 4 (5, 6, 9 even?) years are being rewritten. Did I do this because of that, did I react like that because of this?

I *think* it’s a blessing that when I started taking anti-depressants we stopped trying to conceive.
It somehow gave me some control. It was my choice. It wasn’t that ‘I couldn’t get pregnant’, it was that I was choosing to stop trying. And when we stopped it wasn’t anybody’s ‘fault’. It was just a thing, a sad thing, but life. It was a relief, to be honest.
I had been through the devastation of not giving G a playmate, through the horror of how hard it will be for him, an adult with sole responsible for two elderly parents. Now we concentrated hard on the delights of what we can do with only one child. He’s eaten in numerous Michelin starred restaurants, met the chefs, hung out in the kitchens. He’s travelled the world. Guernsey, Paris, Nice, Barcelona, Venice, Amsterdam, the Sierra Nevada, New York, Bangkok, Shanghai, Beijing. This is not a child that needs sympathy!

But suddenly it WAS my fault. It was MY body…

And the whole mental breakdown thing? How is that related? Undoubtedly it is. When I lay on the floor for hours on end, unable to move, unable to function. Was that my brain in trouble or was that my body shutting down as it tried to workout what the hell was going on?

All the times I felt so fucking useless, struggling so hard just to make dinner, to do the school run, to hoover the floor. We moved from a large house to a flat as I couldn’t keep control of a whole house, don’t get me wrong Matt is an amazing support, but I found it so overwhelming and exhausting. I can’t tell you how many texts I have sent saying ‘I just feel so fucking awful’. Maybe it wasn’t just all in my head…

Chronic Fatigue. Undoubtedly my worst enemy.

The fatigue itself is like a perpetual state of heaviness, not just like you haven’t slept enough, but like your limbs are actually weighted down. I find myself planning from the start of the day ‘if I do this, I won’t be able to do this’, like there’s limited fuel in the bank. I no longer park in the cheap car park and walk to the shops. I park as close to the shops as possible. On a bad day I can sort the washing, but I’ll need to sit down to recover afterwards. I can’t stand through a rehearsal anymore, and I may need to sit and recover before I have the energy to travel home. Last Autumn I loved walking around the lake in the park. Sometimes now I cannot even walk to the end of my road.

 

‘What I wanted to do?’

In my research I came across a Facebook group called ‘Nancy’s Nook Endometriosis Education’.
I learnt two important things here. One, that there are only seven experts in the UK successfully treating Endometriosis. Secondly, that the drugs I was being offered on the NHS can have horrific side effects.
I made an appointment to see a specialist in Manchester (for those who justifiably lose track of where we live, its presently Leeds) and have since had exploratory surgery.

The results read pretty miserably, and when my surgeon came to see me afterwards, he said I needed major surgery to separate my various organs from each other (my left fallopian tube and ovary have completely disappeared), mending of the bowel, AND I needed to take the nasty drugs… Gutted! He laughed when I said this was bad news… ‘9 out of 10 women are fine on them, they just don’t go on the internet to tell you about it.’

After much discussion and indecision, he agreed I could start the drugs on my return from travelling. The surgery is a six month waiting list, with a six week recovery. That’s not until 2018 though, and I’ve a lot still to get done in 2017!

I consider myself pretty lucky most days. Ok, so I can’t say that without remembering that Endometriosis left me infertile, but a whole lot of people suffer a lot more than me.
I can get out of bed most days (Matt brings me tea every morning, that’s a side effect I can definitely live with!). I can still function most days. I have a beautiful son. Yes, life is slower than it used to be. But now I understand why, it’s so much easier. And, although there’s no guarantees the Endo won’t eventually come back, I presently see a light at the end of the tunnel.

In the meantime, I’m off to New York now to Get a Life. Watch this space…

 

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8 thoughts on “Endometriosis and Me

  1. So sorry to read all of this Rebecca but seems you’re being amazingly strong and positive!Really hope all will come right for you very soon.x

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  2. Yep- Found in May 2017 accidently. I havnt had any symptoms before..so i’m part of the silent 2% of the 2 in 10 women with it. I have not been offered drugs and I think my local surgeon did a pretty good job removing it even though he is not one of the 7 surgeons.. Nancy’s nook is a great resource and I used it daily. It is a crazy unspoken about illness… its I think because people thought of as icky but once you understand its hereditary it requires a different outlook. We didnt do anything to have this. I have chosen to be grateful I now know about it and can talk to others about it. You also do have a George which is a great blessing. Keep spreading the word.

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  3. I absolutely understand the awfulness that comes with trying to get diagnosed on the NHS. The first surgeon I saw told me that she saw nothing and “couldn’t treat what wasn’t there.” I’ve since moved abroad and have just been correctly looked at via laparoscopy, and they’ve confirmed my suspicions: I do have endometriosis, the original surgeon was NOT a specialist and was NOT looking hard enough. I’m glad the surgeon in Manchester is looking after you properly. Big hugs xxx

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      1. Doing much better: I’m two days post surgery so still achey and sore. I can feel all the bits where they burnt it off me! Hoping now I can just heal up and try getting my life back on track, it’s been derailed for so long xx

        Liked by 1 person

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