I am sad. I am feeling sorry for myself.
Maybe this blog is just for me to post when I feel sad and mad. I guess it’s true that no one writes (or feels the urge to write) when they’re happy – and I am busy enough and happy enough normally that this means I simply don’t write.
I also get to write a lot in my job, and although that writing is neither personal nor artistic, it is creative and fulfilling.
But tonight I am not happy, I am sad. And writing is usually the best way for me to handle those feelings so here goes.
I live with the fact that I have to eat a very restricted diet simply to function somewhat normally. And it sucks. Because I LOVE food.
Maybe I will write about this in more detail at some point, but basically I have had serious gastro-intestinal issues for the past two and a half years. Since they started, I have visited my GP countless times as well as several visits to three different gynaecologists, several gastroenterologists, a dermatologist and had a bunch of extremely unpleasant and invasive exams.
Finally, eight months ago I got the final diagnoses: I have adenomyosis and suspected endometriosis (cannot be confirmed without surgery but likely based on the adenomyosis, extreme period pain and digestive issues), IBS and am VERY lactose intolerant.
The good side of getting a diagnosis has been that I can address it. I have been following a low-FODMAP diet and avoiding other foods I know trigger bad reactions. And I do feel much better. I don’t feel constantly bloated or in pain or gassy or have to go to the bathroom every half hour.
But it is also extremely restrictive. I cannot eat any dairy at all. I also cannot eat many dairy substitutes such as soy or oat milk – at least only in very small doses, not even enough for a creamy a cup of coffee. I can barely eat any lentils or beans which means no daal, no hummus, no black bean burrito. I have to be very limited in how much bread I eat.
Some of my favourite vegetables, such as broccoli, spinach, kale, mushrooms, garlic and onions are either off-limits or can only be eaten in very small doses. Like three little florets of broccoli. Basically garnish-level amounts.
And it really sucks!
I have a lot of anger about it. I can’t shake the feeling that I should have been diagnosed earlier. And that maybe, if I had been, it would never have got this bad.
Ever since I was a child, I had what was just called a ‘nervous stomach’. I was at the doctor’s several times, but it was fopped off or considered psychosomatic.
But the thing is, my lactose-intolerance is genetic. Maybe if someone had checked that back when I was a child, I wouldn’t have spent the next 35 years eating so many milk products. Maybe that would have left my digestive system in a better state. And maybe I wouldn’t have had so many stomachaches that I thought were simply ‘nervous’.
One of the clues that something serious was wrong was me quitting a stressful job about 18 months ago. I felt happy and free and I thought my digestive issues would get a lot better. They did not.
But a doctor should have explored the non-psychosomatic route way before that. Most people always have something stressful in their lives – even kids. The first time I saw a doctor about this I was eight and we had just moved. Easy answer! This kid is just affected by the move to a new town and new school! Done.
But hey, maybe the doctor could have done an itty-bitty bit of blood work before ordering me to, I kid you not, drink MORE milk because it is ‘calming for your stomach’.
I have also always, always had very painful periods. Can’t-function-without-maxing-out-on-painkillers painful. They have got slowly worse but in a frog-in-boiling-water kind of way where I didn’t really realise how much worse they had got until last year I got my period back post-pregnancy and nursing and found myself in bed for ten days with a hot water bottle and painkillers, unable to move.
My very first period was excruciating. And every one since then has been too. More so over time. But I also learnt to tolerate more pain.
I have been to the doctor about this many times. In my teens. In my twenties. In my thirties.
No doctor ever mentioned the word ‘endometriosis’. Despite the fact that it is estimated that one in ten people who menstruate suffer from it!
I myself only learnt of this incredibly common disease five years ago!
I am MAD that I didn’t know about it. And I am MAD that doctors didn’t know of it or think to suggest it.
There aren’t many treatments for endometriosis but one very good one is the contraceptive pill. It can reduce pain and limit damage accruing over the years.
Because I have travelled so much in my adult life and lived many places, I have spent probably 20 out of my 30 menstruating years NOT on the pill. Because it is a hassle to get and keep and renew a prescription.
If I had known that the pain would get worse and worse and that it could end up affecting your digestion the way it is now, though, OF COURSE I would have gone to the trouble of staying on the pill constantly.
We can’t know. No doctor has wanted to speculate if any of this would have made a difference. But it MIGHT. And I am angry that I didn’t get the chance to try.
I finally learnt there was such a thing as endometriosis when The Guardian published a landmark article about it on 17 September 2015. I and I am sure many others read it and thought: That sounds like me.
It was a relief to learn that the pain I had suffered for all those years had a name. It is also heartening to see how much coverage The Guardian has given to the disease since then – and astonishing to realise how little coverage it got before.
Looking at all the articles on The Guardian’s website about endometriosis, more than 3/4 of them are from the last five years.
Before that special article from 17 September 2015 (which was shared 16,000 times), there is a total of 12 articles spanning the previous 13 years, and nothing from before 2002. The Guardian’s website has articles going back way longer than that, I found one from 1992, so that is not the issue. Rather, it was simply not covered – even though it has been known about for much longer than that.
So I am not exaggerating when I stress how unknown to the general public this was. I didn’t know of it. And I know many friends other than me who have struggled for years to get an endometriosis diagnosis who also didn’t know what it was and who had it dismissed as either regular period pain or, yet again, psychosomatic.
It makes me so angry! We didn’t know better but doctors should have!
When I finally discovered there was such a thing as endometriosis I was living in the US temporarily and only had travel health insurance. This covered me for emergencies but not for something like an endometriosis examination. By the time I was back in Denmark and covered by comprehensive healthcare, I was already pregnant.
So I let it lie. I didn’t like being pregnant in the least but one thing it was good for was no periods. What a blessed, blessed time that was.
And how lucky I know I am that endometriosis didn’t affect my fertility. About half of endometriosis-sufferers also suffer from decreased fertility. I don’t.
But once my pregnancy and breast-feeding days were over, the period came roaring back and so did the pain and so did the digestive issues.
I suspected I had endometriosis and that it could have something to do with the other issues. I did a lot of research. I directly asked my GP about it several times. Even so, even with all that knowledge, it took me over a year to get my GP to give me a referral to an endometriosis clinic.
The pain wasn’t enough. It should have been enough.
The digestive issues weren’t enough. They should have been enough.
Either of the above can be a symptom of endometriosis.
But I had to say that the digestive issues were cyclical before she finally gave me a reference.
I didn’t lie. They are. They get even worse around my period (and weirdly, better a few days before).
But they don’t have to be cyclical. I shouldn’t have had to say that. You can have digestive issues that are not cyclical and they can still be endometriosis-related.
Today I was talking to a professional dietician. I really struggle to eat healthy meals with all the restrictions I have, and I decided I need help.
But just like when you go see a therapist and really face the hard stuff in your life, talking to this wonderful dietician was really tough. Because I had to tell her all the things I cannot eat. And I had to explain all the awful symptoms I get when do.
Most of the time I get on with it. I know I am lucky and I am so so happy I was able to get pregnant and have a child.
But just today, just tonight, I am sad.
Sad that I can’t just eat cauliflower cheese. Or a slice of pizza. Or a sandwich.
Sad that I can only have a burger when I know I don’t have any big commitments the next day.
Sad that I went to the doctor so many times with stomachaches and period pain and no one ever thought I might have something physically wrong that could actually be treated. Sad that they, and I, thought it was all in my head all these years.
Angry at the life I could have had.
Free from pain. And maybe still able to eat ice cream.
That is a thing to mourn.
And tonight I mourn.
Where I'm Coming From 