How self-doubt nearly stopped me finding an important diagnosis…
I have found myself having a very similar conversation with multiple people recently, about self-doubt about your own illness when you’re chronically ill. I’d never previously spoken about it, because, I guess, I don’t want to undermine anyone else’s belief in my illness.
But when I realised that we all think it from time to time, and saw it stressing, in particular in my circles, women with suspected and undiagnosed endometriosis, I felt the need to share my experience.
Self-doubt in chronic illness can be caused by many things. Negative results, dismissive doctors, a stigmatised illness, or just having a diagnosis that leaves you in a limbo land without treatment.
With my ME there have been many times when I have been curled on a ball on the sofa recovering from some minor bit of fun the day before, like having friends round for tea and cake, and thought to myself: “Maybe I’m not as ill as I think. Maybe I’m just imagining it. Maybe if I just push through, I’ll be fine.”
I’m afraid that thought process never ends well. I push myself to be normal and half an hour later I’m in bed wondering what the hell I was thinking. Pushing through and doubting what my own body was telling me is what made me so very ill in the first place.
But I have a story for you. A story with solid lessons and endings that I know many of you will never get yourself but I’m hoping can still impart this important nugget of wisdom to you: you are not alone in doubting yourself but you need to trust that you know your body better than anyone else.
Enter Endometriosis, a condition that can be physically seen by a surgeon but still involves a lengthy process of dismissive doctors and negative tests before you get diagnosed. Even then, women are given ineffective treatments and all too often don’t have their pain taken seriously.
I have today seen women on forums in desperation because, despite diagnosed endometriosis, their doctors are telling them all their current pain is in their heads.
I’d been ill for about four and a half years. Originally, I was just diagnosed with ME/CFS but when my chronic pain started I was sent to a rheumatologist who also diagnosed me with fibromyalgia.
Just before my fibromyalgia diagnosis I became very aware that my symptoms were a whole lot worse just before and during my period. It was taking me the whole month to recover from my previous period, before the next one came along and triggered me off again.
I told my rheumatologist this but he shrugged and said: “women with fibromyalgia report that,” (“that” being unbearable pain during my periods).
It didn’t take long before I went to my GP in desperation to ask to stop my periods. She gave me the progesterone-only pill to do just that, but otherwise the matter was dropped, I had been diagnosed and had to get on with it. And I did (the pill helped my symptoms for a while, if it hadn’t I’m not sure how I would have coped for as long as I had to).
Then a new symptom cropped up. Pain during sex. At first it was really intense, the kind of pain where you forget to breathe. I put up with this for longer than I should of before going to the doctor because I couldn’t face the endless negative tests again.
I’ve spent five years being poked and prodded in an effort to find answers and more often than not I’m told “it’s good news, it’s not *insert illness here*”, like that is something for celebration when you’re sitting there with the symptoms of that illness anyway, just without a name or treatment for it.
Going through tests
So my GP does a smear, she says if it’s clear she’ll send me for a scan. It’s clear, so off to the transvaginal scan I go.
And as I sat there with a probe up my vagina, the radiographer smiled genuinely at me and said: “it’s good news, it’s all healthy.”
I felt, beyond anything else, guilt. Guilt that I was wasting everyone’s time. Her time, my GP’s time, my partners time to drive me to the hospital.
And not to mention the cost of uncalled for tests when there was nothing but a healthy uterus in there.
I sat down in the waiting room next to my partner and I wanted to cry. There was nothing wrong, or so I thought.
My partner, however, reminded me that there was something wrong, we were both very aware of it, and it wasn’t wasted time, even if they didn’t find anything.
So I went back to my GP, slightly down trodden, not sure anymore if I should be pushing for answers still. Luckily, my GP didn’t require any convincing to send me to a gynaecologist, she looked at me with genuine concern and sent off my referral.
The next stage came as a bit of a shock. I was basically given the choice between surgery to investigate my symptoms or just putting up with it.
I was sent away to think about this for a few months. But it took about 24 hours for me to make a decision. Basically long enough for the shock of the word “operation” and the knowledge that came from googling the word “laparoscopy” to make me think: “ok, it’s not as scary as it sounds.”
But the self-doubt nagged at me the whole time. The pain changed. It wasn’t acute anymore, it was more a deep ache that kept going well into the night. I thought maybe it was just a new fibromyalgia symptom and I had to put up with it. Why was I having surgery for that?
The word “endometriosis” still hadn’t been said to me. But it had turned up in my google search. And I remembered a time years ago when someone in a support group said to me: “have you been checked for endometriosis?” and I thought they were being ridiculous because I was complaining of knee pain.
But here it was again… so at my next appointment, I nervously said yes, I did want the surgery. And I used the word endometriosis like it had already been said to me and suddenly the consultant was using it too, and talking about it like it was definitely a possibility. I felt a renewed sense of faith that I was doing the right thing.
That was until she started going through the risks of the surgery. One of the risks, she said, is that they would find nothing and the operation would have been done needlessly.
She meant it in terms of me going through that for no reason but oh, there was the guilt again. I was wasting everyone’s time. They weren’t going to find anything. Why the hell was I having an operation when they weren’t going to find anything?
It didn’t occur to me to think: “These doctors wouldn’t all be agreeing to send me for these tests if they didn’t think it was justified.”
Luckily, I couldn’t bring myself to blurt out “no, I’ve changed my mind!” I agreed because I had already. And I wanted to know. I couldn’t live with not knowing and putting up with my ever increasing pain.
In the next few weeks I went to see my new Lyme clinic and started a stabilisation period, where we tried to sort out my sleep and pain a bit to boost my immune system, before starting the main treatment. I kind of decided that if the op came through after I’d commenced treatment I wouldn’t do it as it would set me back.
The more I thought about it, the more I worried it would make me worse for no reason. Because they wouldn’t find anything.
(P.s. For anyone about to have this surgery, for me, it didn’t actually have any long-term effect on my ME/Lyme symptoms)
Having a laparoscopy
But then they called, they had an appointment for just over a week’s time. So I rushed in for the pre-op blood tests and before I knew it, I was sitting in a hospital chair in a backless gown and my night robe wondering what the bloody hell I was doing.
Then they called me through for surgery…
I came round with three people leaning over me while I tried to figure out what was going on (my brain had forgotten where I was).
One of them was my surgeon, and there was a peculiar look on his face. I couldn’t read it. They asked me a few questions and when they realised I was lucid he explained what he found.
This next bit is hazy, general aesthetic has the habit of making you forget things, but he said the words “severe endometriosis,” with a big emphasis on the “severe”.
He also said he was shocked to find that bad disease when I had so few symptoms.
“What?” I splurted out, with about as much incredulation as I could muster. Then I realised they didn’t have all my symptoms down, because I’d already had my symptoms diagnosed as other things. I went to them with one symptom only.
I tried to explain. But my words, I knew, weren’t fitting together as well as I’d like. “I do have lots of symptoms, I was just told they were other things.”
The truth is, I had read a blog about the symptoms of Endometriosis and had discovered that I could tick very nearly every symptom on the list. But that’s not new, that had happened every time I’d had some new investigation.
So it had dawned on me in these few seconds that this time there was a reason I had all the symptoms. It was because I had the disease.
On my discharge papers I found the words “obliteration of the Douglas pouch”. I googled it and found that this is where the endo in the bit between your uterus and your rectum has caused adhesions, which sticks the two together.
It was an odd feeling being told they could see my illness. It was beyond doubt.
I felt vindicated. Even though I am yet to know how much of my overall illness the endometriosis has been causing. It was there, it had been seen and photographed by a surgeon.
I got myself to an excision specialist, which is the gold standard of treatment for Endometriosis. Think of it like this. The normal treatment for Endometriosis is ablation, where they burn off the endo they find. This is like finding a weed in your garden and breaking it off at the stem. If the roots are still there, it’s going to grow back.
Excision by someone who knows what they’re doing is like digging out that endometriosis by the roots. If you’re careful to make sure you get it all, it won’t grow back.
And the better the surgeon the better he’ll be at both knowing how to get all of those roots out and finding the other weeds growing in your garden. The ones hidden in unexpected places, and the ones that are just sprouting and aren’t very noticeable yet.
Although, even the most expert gardener may occasionally miss a few weeds.
He gave me even more vindication. In my consultation he said to me “this is really having a big impact on your life,” and It took me aback. Because it was. And it was blindly obvious to me and my partner (and my family) and yet I had never truly let myself think that.
I had doubted that my experience of pain and fatigue and all the rest of it wasn’t in the very least exaggerated by my mind. And yet, when the surgeon saw inside of me, it was even worse than he was expecting. He told my partner that it would be causing me an immense amount of pain.
I’m fresh from surgery, so I can’t tell you the outcome of it yet, but I wanted to share this message with you: it is normal to doubt your own illness sometimes. You are not alone in thinking it (so don’t give yourself a hard time for it).
But I nearly let it stop me getting my first laparoscopy. I don’t want to think about the impact that decision would have had on my life.
While you can’t stop self-doubt popping up, don’t let it drive you, have faith that your experience of illness is real, especially when it comes to making decisions about your health.
You may not be able to see your illness, but it doesn’t mean your experience is any less valid.
Hope you all are as physically and mentally well as can be,
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