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We Need to Start Listening to People With Endometriosis

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It is amazing to think that endometriosis is one of the most common gynaecological diseases of the 21st century and yet we still have to fight to be heard.

Why are so many people still slipping through the net and not being diagnosed properly? Why can it take up to 11 years for someone to be diagnosed with endometriosis when surgical techniques have come such a long way, and why are GPs still dismissing hideous, painful periods as “normal”?

Where are we going wrong as a society? And what can we, as people who get periods, do to change this?

If a GP knows what to look for then the “classic” signs of endometriosis are pretty easy to spot. It seems that painful periods are “the norm,” but when you are being signed off sick month in and month out or missing weeks of school, this is not normal. The most common symptoms of endometriosis are painful periods, painful sex and pain with emptying your bladder or bowels. These are all indicators that something is not quite right when it comes to gynae issues. However there are still GPs who refuse to take their patients seriously and who refuse to refer patients to a gynaecologist. Instead all too often, they dismiss their patient’s symptoms and imply they are either paranoid, depressed or hysterical. They then misdiagnose the pain and send the poor person home.

If a person in pain is told there is nothing wrong with them, it can have serious repercussions.

When I was diagnosed with endometriosis and the pain didn’t get better, my GP managed to convince my parents the pain was all in my head and that I needed to see a psychiatrist. As far as he was concerned, my pain was psychosomatic and the sooner I had my head seen to the better. It didn’t matter that my gynaecologist told my parents the pain was real — they listened to my GP because it was easier to accept I was making everything up. The more I tried to get them to accept the pain, the more they buried their heads in the sand. So instead of focusing on myself and trying to learn how to live with the pain, I was locked in a battle of wills against friends and family. It was exhausting.

So many of us have been told the pain isn’t real and that there is nothing wrong with us. All we need to do is pop a few pills, have CBT and hey presto, we are cured of all pains and ills. If only it were that simple!

From how I’ve been treated, these doctors seem to imply people who get periods are making it all up just so we can be given strong painkillers. Apparently there is nothing physically wrong with us and therefore we ought not be in pain. As far as some GPs and gynaecologists are concerned, we are all barking “mad” and the only reason we are in pain is because we’re depressed or we’ve been abused as children. Either way, the implication is that we’re suffering from a complete mental breakdown.

It’s not really surprising when you think about it. Being in constant pain can be extremely grinding and debilitating. It wears you down until there is nothing left of you to fight. No wonder we feel depressed and afraid. The paranoia sets in and soon you believe that maybe you are going “mad” and there isn’t actually anything wrong with you. But what these doctors don’t understand and need to realize is that depression is a symptom of the pain — not the other way around.

More often than not, getting a diagnosis for endometriosis can take forever. People are told they have IBS, pelvic inflammatory disease or just “typical period pains.” The symptoms are treated accordingly but the pain still doesn’t go away.

Sometimes a doctor will investigate further — ordering scans and MRIs — but unless the doctor knows what they are looking for on an ultrasound, then endometriosis will be missed. However, most of the time, endometriosis doesn’t even enter into the equation and therefore by the time it is discovered, it is much further advanced and thus harder to treat.

Doctors are beginning to realize that any person in their reproductive years could be a possible candidate for endo. More and more teenagers are being diagnosed with endometriosis as well as people in their early 20s. However there are still doctors out there who believe that endometriosis is something which affects women in their 30s; more commonly known as The Career Woman’s Disease. They still believe that teenagers are too young to have endometriosis and that a hysterectomy or pregnancy will cure the disease.

When will these doctors see sense? When will they begin to understand that endometriosis is a serious threat to our health and well-being? When will they see that it’s not just something which causes painful periods?

Why are so many people falling through the net? And what do we have to do in order to get these doctors of ours to listen? How do we change the perceptions of our nearest and dearest? How do we get people to believe that this pain is real and that we are not just making it up in order to gain attention? How do we get our doctors to understand that we are not drug seekers and that we actually need these high doses of pain medication?

The trouble is, if no one listens or takes you seriously, you begin to believe these abnormal amounts of pain are all part and parcel of “being a woman.” They therefore decide to learn to live with it and don’t even consider that there may be something wrong. In fact, some people don’t even know they’ve got endometriosis until they go in for routine surgery, such as an appendectomy or a “Lap and Dye” to see why they’re not able to conceive. They may have had a niggling suspicion about their pain, but would probably have never had the courage to push for further tests.

I was 12 when my periods started and I thought I was in hell. Yet none of my friends seemed to suffer and so I just thought I was being pathetic. I’m sure I did visit a GP or two about my pain, but most of the time I was told to “suck it up” and that painful periods were normal. But we know that they’re not. If you’re too ill to go to school or college, that isn’t normal. If you’re throwing up every month due to the pain, that isn’t normal. If you are bleeding every time you have sex, that isn’t normal. Pain which has you crawling on your hands and knees in the middle of the night is not normal.

Why is it that people with endometriosis are ridiculed or not listened to? Why aren’t people investing in research into a disease which affects approximately 176 million people worldwide? Why do we still have to fight doctors and battle GPs in order to heard properly? Why do we have to exaggerate our symptoms so that someone takes us seriously and believes that we are in pain?

Extreme pain, heavy periods, bleeding in between periods and continuous exhaustion are not things we have to endure just because we’re people who get periods. We shouldn’t have to just “grin and bear it” or “suck it up.” Nor should we be dismissed by doctors as being hysterical or depressed whilst we continue to struggle with severe bouts of sickness and pain.

Why is it that we have to fight tooth and nail in order to be heard? Why is it that endometriosis is being missed time and time again by doctors? I know that endometriosis is a specialist subject, but surely it’s got to the point where GPs have a better understanding of the symptoms so that they can then refer patients to a specialist before the endometriosis worsens? If GPs were able to spot the symptoms early, then the disease could be dealt with swiftly and efficiently. The risk of further complications would lessen and there would be much less emotional trauma, because the need for multiple GP visits would lessen.

Our GPs only need to do two things in order to help us: they can listen to us and they can believe us when we tell them that something is wrong.

Why would anyone want to kick up a fuss so that they could be examined by a gynaecologist? Maybe they think that being poked and prodded year in and year out is something we enjoy? Maybe they believe that putting ourselves through this misery is something we do just for the hell of it? I can assure you, I wouldn’t do this if I didn’t have to. I would much rather live a normal, day to day life than have to worry about hospital appointments, GPs and everything in between.

It is hard when people won’t take you seriously. It’s hard when you’re labelled as being hysterical or when someone tells you that you need psychiatric help. It’s horrid when your family thinks you’re making mountains out of molehills and when your friends stop inviting you out because they can’t be bothered to understand what’s going on with you.

It is horrid when doctors cut you open only to tell you that there’s nothing wrong with you — that they can’t see any signs of endometriosis. It’s horrid when they tell you that the pain is “in your head” and that there is nothing causing it except for “nerve damage” and “remembered pain.” Yet all the while your symptoms persist and your pain worsens.

I have been emotionally scarred by my experience of not being listened to. It hasn’t been easy trying to convince the world and his wife that there is actually something wrong with me.

But I’ve been lucky. I have found an excellent gynaecologist and he has, at long last, given me a chance of getting my life back. I also have an amazing support network. I have friends with endo who I can talk to as and when I need to and cry with when things get bad. I have an amazing husband who looks after me to the point where I feel guilty at times. This isn’t how I wanted my life to be. But it is what it is and thankfully I finally have a doctor who believes in me. It’s just a shame that it’s taken so bloody long. I was diagnosed in 1994 and the surgery that seems to have actually helped was performed in 2016. I just wish that I had found my miracle surgeon 10 years ago.

If our GPs and consultants actually listened to us and believed us when we said we felt unwell then not only would it save time, money and effort — it would also save our sanity. Imagine only having to go to one or two appointments instead of being pushed from pillar to post — going round and round in circles for years on end.

Who knows? Maybe one day someone will get the picture and in the future people with endometriosis won’t have to endure the indignity and horrors that many of us have had to endure in the past. Perhaps one day endometriosis will be recognized for what it is; a disease which rips lives apart, instead of just something that causes painful periods.

Follow this journey on Antonia’s Epic Endometriosis Journey.

Getty image via David De Lossy

Originally published: August 7, 2019
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