Making the invisible visible

I live with pain.

Most people will still be reading this article after that comment. I think I will probably still have some readers who are curious to know what sort of pain I live with.

I suffer from endometriosis.

There it is. That’s the switch-off for many because now they know that I am about to talk about the unseemly things, the “women’s things”, the “downstairs” stuff, the things that should be unspoken. I’m going to plough on, hopeful that people who also suffer will identify with this, and people who are curious will feel better informed.

1 in 10 people born with a uterus suffers from endometriosis. If you’re reading this on public transport, look around you. Do those sums in your head. Chances are a good percentage of the women around you are in pain right now. If you are not sure what endometriosis actually is, best have a read of the details on the website of Endometriosis UK. But what is it like to live with it? For me, it predominantly means pain.

What do I mean by “pain”? I had nightmarishly heavy periods right from thirteen years old. I bled through my clothes and often couldn’t afford to leave the house as period protection was too expensive. With those heavy periods came crippling pain. I fainted a good few times at school but managed to keep it a secret. For roughly ten days every month, I spent more time in the toilet than the classroom.

I finally got my courage up to talk to a doctor about it, and he put me on the pill.

That was all he did. He told me that heavy periods are “normal” and at 16 he put me on the pill.

Over the next couple of decades, the periods got worse, and the pain too. It was only after I had a child that I realised the pain I was in was exactly the same as the early contractions of birth. I’d realised with some horror that I’d grown used to dealing with pain that was every bit as bad as having a child (and I did not have an easy birth).

After my daughter was born, the pain became worse. It no longer only came monthly, it was all the time. I kind of dragging ache as if my organs were being pulled downwards by hot hooks. Sometimes it was so bad it made me vomit. Sometimes I couldn’t walk. I had warnings at work about sick days, but how could I work when I couldn’t stand upright? How could I work when the pain came in waves that made me faint?

I kept going back to the doctor, but each time was told it was “just bad periods”. I was given stronger painkillers and told to “try yoga” and various other things. Hot water bottles. Long walks. Running. Stretching. Acupuncture. Hypnosis…. Then more drugs to arrest the bleeding in the hope that would also stop the pain. It didn’t. Norethisterone is normally prescribed to arrest periods for 4-6 months. I took it for over five years.

I wasn’t sent for any further tests for another five years.

Five more years in constant dragging pain. Five years in pain that some days would literally take my breath away. Five years of bloating, and backache, and anger and exhaustion and the depression associated with feeling as if I couldn’t take the pain for a moment longer.

Finally, I found a doctor who agreed to send me for tests. Blood tests first, then scans. Standing alone in cold rooms in backless hospital gowns while faceless men told me to “lie still, turn over, on your side, the other side, thank you, you can go.” Only to have “inconclusive” results. Then internal scans, scrapes, biopsies, more blood tests, more scans… Told repeatedly that it “probably isn’t cancer”. With the pain eating away at you for years it becomes increasingly difficult to believe the “probably” in that sentence.

Eventually, the doctors (so many by now that I’d lost track) gave me a diagnosis of endometriosis. I have two ovarian cysts, and some polyps, and some scarring. It took me over eight years to get that diagnosis.

I wish I could say that with a diagnosis came a solution, but that would be a lie. I was fitted with a coil to prevent bleeding and that helped a bit. The other things I’ve been offered included hysterectomy and uterine ablation. If you’re not familiar with these options, feel free to look them up. It’s definitely making a choice between a rock and a very very hard place.

I’ve lived with this for so long and heard so many terrible things from friends who have taken the surgery route, that I’m living with the devil I know. Me and this pain are old adversaries. I know what it will do. If I have surgery there is no guarantee I’d be better off, so for now (like many sufferers) I think I’ll stick with the pain. I’ve had it for so long that I don’t think I’d remember what life is like without it. I understand this pain.

I know that I can’t stand for long, or sometimes at all. I know that if I sit for more than an hour I will limp for a while as my pelvis will seize up. Cramps can often make me limp. The cysts press against my bladder, so I can’t go for long without visiting the toilets. When the endometriosis flares up badly, it can also give me diarrhoea, so long distance travel is definitely a challenge. When the pain is at its worse it is like a hot blade in my guts. The pain at times is literally breathtaking and I’ve often wondered how it is possible to bear it. Most days it’s like a dull ache, a lurking bear of pain waiting to take a savage bite of me when I least expect it.

There are also the days I breathe through it – panting through contractions. The days I walk and walk (slowly, shuffling, limping) because there is no comfortable sitting position and I’m afraid my hip bones will seize up. You can always tell which women have endometriosis because they probably own a number of hot water bottles. On the bad days, I sit with one on my lap, and two tucked behind me. I avoid painkillers until it’s absolutely necessary because I don’t want to become accustomed to them. I did that once, and breaking the painkiller habit was awful.

I know that when we try to talk about the pain, people still don’t believe us. How can it possibly be that bad? If it’s really that bad, how can we cope?

Because we have learned to, and because we have had to.

We have been told our whole lives to “deal with it”, and for those of us of a certain age being born with a uterus has been a complicated journey. We have this complex set of monthly conditions that dominate our lives, but for some reason, we are raised to feel shame talking about it. Our blood is dirty and we have carried that shame since our early teens. We didn’t talk about our periods, we bled in secret and when we felt pain, we had that in secret too. We felt it was our cross to bear because we were encouraged to be that way. When the doctors told us it was “just one of those things”, we believed them.

This is why this conversation is so important. We have to break the silence. We have to give the future generations more options and better choices. Education is essential so that young people no longer have to feel as if this is some kind of a private shame.

When I was asked if I would endorse a new exhibition supported by Endometriosis UK and sponsored by Standard Life UK, it didn’t take me long to agree.  These exhibitions in London and Edinburgh, Beyond the Invisible, are part of the greater plan to create a wider conversation about endometriosis and its sufferers. The photographer, Rankin, has taken a series of photos around which the exhibition is based. These highlight real life stories of endometriosis sufferers, and hopefully, this will help people to talk more openly about their plight.

Join the conversation, share #RealLifeStories about #Endometriosis, and visit the exhibitions if you can (full details below). Those of us who feel comfortable talking about issues like endometriosis and periods can do a great deal of good simply by not hiding away any more. The next generation coming up behind us will, perhaps, grow up not hiding natural bodily functions and illnesses. If they feel more comfortable about talking about their periods, maybe their openness will have a positive impact on things like medical awareness and diagnosis.

Let’s all work hard at making the invisible, visible.

Dawn Finch is an author, librarian, and activist.

This post has been sponsored by Standard Life UK who are in collaboration with Endometriosis UK in creating the Beyond the Invisible exhibitions in London and Edinburgh.

Admission to both exhibitions is free. Please share and use #RealLifeStories
#BeyondtheInvisible
#Endometriosis
#InvisibleIllnesses

London – 21* – 28 March, 2019
La Galleria Pall Mall
Royal Opera Arcade
5B Pall Mall
London
SW1Y 4UY
Open 11am-5pm each day

Edinburgh – 1 – 8 April, 2019
Stills Photography Centre
23 Cockburn Street
EH1 1BP
Edinburgh

Open 11am – 5pm each day

*Open 12pm-5pm on launch day to public