I remember the fear I felt prior to my first endo related surgery a few years ago. It wasn’t fear of the surgery itself, the anaesthetic, the potential risks, or the pain of recovery. Rather, I feared the doctors wouldn’t find anything wrong with me despite all my symptoms. It was the fear that my pain was all in my head. Thinking about it now, I wonder what made me question myself so much? Why was that my greatest fear? And even if it was all in my head, would that have been so awful?

Curiously my fear didn’t dissipate once I received my diagnosis. Yes, I felt relief to have a name for my pain, something concrete to explain all the troublesome symptoms that had been plaguing me for years but I still didn’t have much faith in myself. For so long I’d just dismissed that there could be anything connecting my intense back pain, cramps, diarrhoea, nausea, bloating, heavy periods, migraines, etc. I was so used to finding reasons – perhaps I just had really bad gastro. Maybe I had injured myself when I lifted the heavy suitcase on holiday (I am a chronic over-packer after all). Maybe I was stressed and over-tired working too much. Perhaps I wasn’t looking after myself properly. I came up with reason after reason to explain my pain.

After time, it was more remarkable if I woke not being in pain. At that point, I convinced myself that I was exaggerating the feeling in my head. Every morning when I went to get out of bed it felt as if my insides were being stretched and pulled apart. I thought that having been in pain for so long the almost daily knife-like twinges I felt throughout my abdomen and down my legs were a kind of new normal. I started to believe that I was making things up, that it was my mind filling me with pain. This was particularly easy to justify because I had just had surgery where the endometriosis had been removed. I had been privileged enough to have the disease excised by a specialist surgeon. Surely these symptoms were not the same as before?

I didn’t trust myself or my body, not even after I had gained a diagnosis.

I didn’t trust myself or my body, not even after I had gained a diagnosis.

Lying on the operating table for my second and third laparoscopy to remove yet more endometriosis, all within 18 months of the first surgery, I was gripped with the same fear I had felt the first time. I was terrified of not being believed. Of making things up, or worse still, wasting the doctor’s time.

Each time, when endometriosis was found and removed, I felt a strange relief when I heard my surgeon confirm “Yes, we removed a lot of the disease, much more than we had thought was there.”

Why was I so relieved to know that this disease was still present inside me? Was that really what I was feeling? Surely not.

I didn’t want there to be more disease. I didn’t want more pain. More than anything I never wanted to have to think about this endometriosis ever again. But I was also desperate for some kind of confirmation that I wasn’t making this all up – that my struggle to do the most basic daily tasks, my constant bloating and worsening symptoms were real. And in my thinking, the way to prove that was for a continued diagnosis.

Pain of course is a complex phenomenon. You can have immense pain without a diagnosis. And particularly with endometriosis, you can have a diagnosis with minimal pain. There is not a linear relationship between the type and amount of the disease you might have and the amount of pain you will experience.

There is also absolutely nothing wrong with doing everything in your power to investigate your pain, its causes, and the treatments that might help you. You know your body best after all. There’s no point it gaslighting yourself.

A few of my close friends have recently undergone, or are planning their first diagnostic surgeries for endo. In speaking with each of them I have been struck by how similar their thinking has been to my own. What if the doctors don’t find anything? What if I have been exaggerating this? What if my pain is getting better, is there a need for the surgery? What if it’s all in my head?

I think a big part of this has to do with the fact that the current diagnostic tool for this disease requires anaesthetic, and a surgeon cutting into you then sending samples of the suspected tissue away for analysis. It’s not a simple blood test or even an internal scan – it’s major and expensive.

I don’t find it that surprising then, that the stats show the average diagnosis takes between 7-10 years or thereabouts. Along with a lack of access to affordable and quality medical care as well as the lack of general education about the disease, I think another factor in the delay in diagnosis is the dismissing of our own conditions.

All of the people I know who have finally gone through with getting a diagnosis have put it off until the symptoms were bad. I’m not talking just heavy periods, cramping, or pain with sex. I’m talking sometimes incapacitating pain. And despite this pain, all of them have confided in me pre-surgery that they are convinced and fearful that nothing will be found.

I wish this fear wasn’t part of the process. I wish we could all have the resources and be empowered to bravely work towards figuring out what was wrong without fearing we are wasting a doctor’s time, fearing we might be dismissed or not taken seriously.

If you are reading this, considering your diagnosis or pre-diagnosis please know that doing so is brave. Fear will most likely be surrounding you but it’s not all in your head even if there is no diagnosis. All that means is that you’ve tried to find out what is going on with your body- and there is absolutely nothing in the slightest wrong with doing that.

For now, I hope you can bravely fight through the fear and know that you are not alone.

Rach

xx

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