How my endometriosis became severe before anyone noticed

The undiagnosis of my endometriosis

Okay, so my first sentence is going to contradict my headline: I’ve just been diagnosed with severe endometriosis. But I what I want to write about is how it got so bad without any of my specialists, my GP or myself even questioning if I had it (until very recently at least).

Because what happened when I came round after my laparoscopy (a keyhole surgery to investigate for things like endometriosis) was the surgeon looked genuinely shocked, and said to me: “It’s weird, you should be more symptomatic.” To which I replied: “I am, but it’s just been put down to my other illnesses.”

And this sparked a little flame of anger in me. Why had it got this bad before being discovered? My drugged-up reply was part of the answer. But it wasn’t the whole answer. Because I had gone into that surgery half expecting to be told they couldn’t find anything wrong. That’s what happens when you have Lyme, ME or Fibromyalgia. You get a new symptom, you have it investigated, everything comes back normal.

So I’ve decided there are three factors at play here:
1. If you already have a chronic illness new symptoms get blamed on the pre-existing condition (by yourself and doctors)
2. Period pain and related symptoms aren’t taken seriously enough (by yourself and doctors)
3. The taboo around period discussion means women don’t know what’s “normal”

So let’s examine these one at a time.

1. The catch-all condition

When my fibromyalgia symptoms started, and my endometriosis got a lot worse, I mentioned to three separate doctors how bad my symptoms had got during my period.

To my rheumatologist I said: “My pain gets really bad during my periods. My normal pain flares but my hips and my stomach just all hurt together.”

His response: “Yes, fibromyalgia patients report that.”

No follow up questions. No: “do you have heavy, irregular periods.” Just a, yes that will be the condition I’ve only just diagnosed you with. (I’m now slightly suspicious knowing how far the endometriosis had spread from what they could see in the laparoscopy and the fact they might want to do an MRI to investigate further that it might not be fibromyalgia after all. A discussion to be had when I go back to see the surgeon.)

But I accepted that, though. I believed him and thought I just had to get on with it.

I also told my ME clinic about how badly my periods were affecting me. I was seeing a clinical psychologist there, but they normally refer more medical questions onto other team members. What didn’t help here is they knew I was seeing a rheumatologist who was investigating my new symptoms.

But I told them this: “I feel like I spend my life recovering from periods. My exhaustion increases the week before, the week during (my periods last seven days) and then I spend two weeks trying to get myself back to normal from that. Then… I might be lucky and get a few more weeks before another period, or it just starts up again.”

I also told them how bad my pain gets just before and during my period. But I was being investigated by someone else, and when the rheumatologist diagnosed me with Fibromyalgia they too accepted this as the explanation for all my symptoms and we stopped mentioning it.

My GP, actually, I give a lot of credit to. After being told I had to put up with this and it seemingly just getting worse, I went to her with desperation in my voice for the first time (I’m a regular in her office so she knew this wasn’t normal for me) and said: “Can I stop taking breaks from my pill so I don’t have periods?”

No was her answer, but she did instead put me on a different pill, the mini-pill, because “it helps her endometriosis patients”. She too had accepted the fibromyalgia as the cause, but she did treat my symptoms. And it helped. A lot.

At first it made things worse, when I had my periods my pain lasted longer. But soon my periods vanished and my pain settled down to something I could cope with. I was no longer stiffly stumbling into the living room in tears once a month, saying “could you get me a hot water bottle,” between sobs and then loading myself up on painkillers.

Thank you to my GP for that.

Me in my hospital bed after my laparoscopy
Me in bed after my laprascopy

But it wasn’t until My cervix started hanging lower (apparently the pill I was on can relax things a bit down there) and I started experiencing acute pain during sex, that I started having the investigations that led to my diagnosis.

When my cervix moved back up again (no idea why) the pain was much better, I started to wonder if I was wasting everyone’s time with these investigations. Which brings me nicely to my next point..

2. Period pain (and women’s pain generally) aren’t taken seriously enough

This has been in the news fairly recently. There was the story that doctors take women’s pain less seriously than men’s, the story that period pain can be as bad as a heart attack and the story that a work place was offering “period days” to its female employees.

And I remember watching a debate about whether women should be given days off for period pain. One woman was saying: “No, we shouldn’t make a special case for women. It doesn’t help them to be taken seriously in the work place. A period shouldn’t stop you going to work. Take some painkillers and get on with it.”

The other was saying: “I don’t think you understand how badly periods affect some women. They can be in Excruciating pain, barely able to leave bed etc.”

But the other woman was not having it. And I wanted to scream at the TV. What we don’t need is special period days. What we need is for period pain to be taken seriously enough that women don’t feel ashamed taking sick days for it and employers see it as a genuine medical reason to need a sick day.

It would also need a change to those strict sickness policies where you get taken in for disciplinaries for being sick too often. I was taken in for a warning meeting once because I had gone back to work too soon with a bad ear infection, and had to have an extra two days off. As I had gone back in for a day, this counted as two periods of sickness and meant I had to have a meeting about it. If I hadn’t gone in for that day, there would have been no meeting.

But, I fear, it’s not just doctors and employers who don’t take period pain seriously. If my rheumatologist had picked up that something needed to be investigated, I would only have been diagnosed a year and a half earlier. By this point, it had already got pretty bad. It was me who hadn’t mentioned it until I was desperate. It was me who had just put up with it until the point that I couldn’t cope. It was me who neglected to go into my doctors office and say “something’s wrong, you need to investigate it.”

Because I didn’t know. I didn’t know it wasn’t normal… which, again, leads me nicely onto my next point…

3. Women (or maybe just I) don’t know what is normal

Ok, so no woman is “normal”. In fact, I’m told, one in 10 women have endometriosis. I think, in hindsight, I’ve had it pretty much since my periods began, but it was at a level that I could deal with it and that having surgery to investigate it would have seemed extreme compared to the symptoms.

But I very rarely talk to other women about my periods. In fact, I can count the times on one hand. A brief conversation in which I learned one of my friends also has heavy periods, a conversation about whether I could use a tampon yet, the “errr, my period has started,” conversation the morning it began for the first time, and one about which of the girls in our class had started yet.

That’s it.

And sex education didn’t really enlighten me either. Diagrams of the female reproductive organs, a video in which a woman walked around naked with a large bush while the boys in the class giggled hysterically. I missed the condom on a banana lesson, but that was long after my periods had started so I doubt I missed any period-related pearls of wisdom there. I know from all this how my reproductive system works. What I didn’t know was what other women’s experience of it was. And, actually, an open conversation in that classroom with just girls and a female teacher, rather than a video made in the 80s with very dry facts that was actually very boring except for the big bush would have been much better.

I do feel it is partly my fault that I didn’t speak up sooner. But I also don’t know if I would have been taken seriously if I had done. My ultrasound was clear. As I say, I don’t think I would have felt my symptoms warranted surgery (even if it was minor) to investigate before things worsened. I had got used to being massively constipated and bloated just before and at the beginning of my period. I had got used to my entire digestive tract and uterus feeling swollen just before and at the start of my period. I had got used to feeling sweaty and light-headed and generally quite ill when my periods began.

And I just got on with it, because I thought I was meant to.

 


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The undiagnosis of my endometriosis. How it went undetected for so long

Laura Chamberlain

Laura is a writer blogging about living with chronic illness, namely Lyme Disease, Myalgic Encephalomyelitis (ME/CFS) and Fibromylagia.

She likes food, cats, bad jokes. Unfortunately, her boyfriend is allergic to the last two...

5 Comments

  1. Laura, You write with such honesty and describe the pain and the failures in our care systems. Equally I agree with you when a new pain or symptom starts it is so easy to say it is due to the fibromyalgia, ME, Lymes, chemo, cancer, radiotherapy…. thank you for your open and honest pen!

  2. You are spot on, Laura. I suffered through debilitating periods as a teen, not knowing they weren’t the norm. And it seems once you have a label, no further medical investigation is warranted. You can have 10x the symptoms of an able bodied person, but they are brushed off.

  3. I suffered with endo for 14 years (in hindsight) before I was finally diagnosed. And everything you said is so true. Women are taught to believe the pain is normal and it’s our lot in life to suffer. Nobody thinks that something as common as a period can be a sign of something much more sinister going on. But no more! The tide is turning and we endo sisters are making progress in getting our voices heard! Although I’m an American, I encourage you to get involved with Endometriosis UK. They’re a wonderful group of ladies!

  4. Thank you for this piece, it’s like you were speaking directly to me. I’ve just been diagnosed and only because I was at the the doctor for ANOTHER uti and happened to mention that I thought I might have developed IBS , when asked why I explained the pain I was experiencing seemed like it was in my bowels but then as it went lower it moved more to the front. When asked when I experienced the pain I said it was usually the week before my period and that I thought that was because everything was bloated and put more pressure on my bowels. Luckily that rang alarm bells for my doctor and when he stated asking me other questions he realised quickly what was going on and has referred me to a gyno.
    On looking up the symptoms I couldn’t believe I had been experiencing every single one for years and had just been putting up with them and thinking they were “normal”.
    I’ve eaten a hole in my stomach from taken painkillers for headaches, back & shoulder pain, along with period pains. I’ve been gulping down bottles of gaviscon to help with the nausea.
    I’m just so relieved to finally know that there is something actually wrong! That I’m not too lazy to get out of bed, that I am genuinely exhausted! That pain during intercourse isn’t normal.

    1. I’m in the shoulder pain club too. Wondering now if the reason my physio can’t get it to budge is because it’s actually endometriosis on the diaphragm’ I think I was most shocked that I could have a disease I’ve heard of and not realise. And I could give Doctors’s a list of symptoms that are classic endo and not one mentioned it!

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