I May Or May Not Have Endometriosis: My Story

Hi folks! Something a little different for you today. It being Endometriosis Awareness Week this week (3rd-9th March) I thought I’d share my experiences with the condition, and do what I can this week to spread the word.

I’ve used inclusive, gender neutral language throughout this post. Not every woman has a uterus, not every person with a uterus is a woman. I firmly believe that resources on conditions like endometriosis should be accessible to everyone.

This post is a little long – if you’re here for the facts, then I’d advise you to read the first section, and then skip to the useful links at the end.

First, the exposition.

Endometriosis is a condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. These endometrial cells react to your hormone cycle in the same way as the ones in your uterus, building up and breaking down. Because they’re in the wrong place, this can cause severe pain during periods, and is also related to infertility, fatigue, and bowel and bladder problems.

For every ten people with a uterus, it’s estimated that one will have endometriosis. So it’s hardly an unusual condition. But despite this, it takes an average of 7.5 years to be diagnosed in the UK. GPs show a worrying lack of awareness of the condition, and from personal anecdotal evidence, people often have to suggest it as a possibility to their doctors before it is checked. Another problem is that currently the only way to definitively diagnose someone with endometriosis is with keyhole surgery.

Here’s what happened to me.

I had always had fairly heavy, but predictable, periods. The pain was enough for me to down a couple of doses of ibuprofen, but I never had to take time off school. Back in June/July 2011, when I was seventeen (as long as I’ve got my maths right!), something weird happened.

For three nights in a row, I woke up with severe pain in my hip. If it had been in the daytime, I might have panicked more. But because it was at night, somehow it didn’t bother me? Idk. I lay there for two or three hours until the pain went away, and then I went back to sleep. I mentioned it to my mum in passing, but once it stopped, I passed it off as a random Thing, and forgot about it.

The next month, the same thing happened. This time, I was worried. I went to the GP, but because the pain wasn’t actually happening at the time of the appointment, and I hadn’t yet linked it with my period cycle, she shrugged it off, and told me it was probably nothing.

Then it started happening more often. My mum hadn’t actually seen me in pain at all at this point, so I think she dismissed it as a weird Thing too. In the holidays, we went to Norfolk and stayed in the family bungalow – me, my mum, my brother and my grandma. And it happened again. I’d worked out by now that it was least painful if I lay on my front, but this time it was happening during a period, so if I lay on my front I’d stain everything with blood.

I didn’t sleep much. Neither did my mum, what with all the tossing and turning and a squeaky bed. The third or so episode was the first time I’d still been in pain come the morning. It hurt so much that I couldn’t eat, I couldn’t sit still. My mum saw how much pain I was in and drove me to the local GP. While we waited for an emergency guest appointment, she tried rubbing my back, but that just hurt more. My whole lower back was on fire. The GP thought I might have appendicitis and sent us straight off to Norwich Hospital. By the time we got there, of course, the pain had stopped. I had been in agony for five hours, the longest episode so far.

The hospital decided that it wasn’t appendicitis, and asked me to come back the next day for an ultrasound. I did, and they saw some lumps around my right ovary which may have been cysts. I was told to have another ultrasound when I got home.

Although being examined by surgeons at the hospital was scary, I realised later that the GP thinking I had appendicitis was the best thing that could have happened. When I got home and went back to my original GP, I was referred almost immediately to a gynaecological specialist. I think it would have taken a lot longer to get this far without that hospital visit.

In the meantime, the pain was escalating. It was still weirdly regular, but by November/December I was in pain for 2-4 hours, around every 26 hours. I was in my second year of A-levels at the time. I was offered extensions on my coursework, and I think I had a note to say that I could leave class whenever I needed to. Some days I ran out of painkillers and had to go home. I could barely walk across the green to the train station when the pain was at its worst. I’d been told by the nurse at the hospital (thank you, that nurse!) that I could have co codamol, ibuprofen and Buscopan at the same time, so I was taking at least two doses of those three painkillers most days.

I now can’t even smell co codamol without gagging – that’s how much I was taking (and also how gross it is). And more weirdly, there was only one point in the pain cycle when the painkillers made any difference. I would have around twenty minutes of low-level pain before the full attack came on. If I got painkillers down me before it whacked up, the pain stayed at a manageable level. If I didn’t, no painkiller would make the slightest bit of difference.

So it’s fair to say my life was a bit tricky for a while. I had a couple more ultrasounds and an MRI to decide whether those lumps around my ovary (remember those) were cysts or something else. In the end, the specialist concluded that the most likely diagnosis was endometriosis, and put me on the contraceptive pill to control my hormone levels.

Within a week, the pain had almost entirely gone, with only the occasional niggle in place of the agonising hours-long episodes.

And that was it. No more pain, take my exams, stay on the pill, the end.

Until, in the autumn of 2016, now aged 22 and a university graduate, I went to my local GP to complain of mood swings. She suggested that I change the brand of pill I was on (which worked, by the way, microgynon is an evil demon), and also have an appointment with a consultant regarding the endometriosis, since it had gone unexamined for four years.

While I was with the consultant, I asked if I could get a doctor’s letter to say that I had endometriosis, so that I could prove a pre-existing condition to my workplace’s private healthcare provider.

There was an awkward silence.

Then (and I spoiled you slightly for this in the title) the consultant said that I hadn’t been diagnosed with endometriosis.

Another awkward pause.

After some questions, it transpired that, though the specialist had raised the possibility of me having the condition, and successfully treated my symptoms, there was no way he could have actually diagnosed me. The only method of diagnosis for endometriosis is keyhole surgery.

The consultant then went on to doubt whether I had ever had endometriosis in the first place. Now, it’s not like I want to have, or to have had, endometriosis. But if I didn’t, then what was the explanation for my six nightmare months of agony? The consultant didn’t seem that bothered. I was asymptomatic now, he said, and hadn’t experienced pain for years. If I wanted to see whether the cause of the pain was still present, I could come off the pill for six months and see what happened.

No bloody way. Because of the original instructions from the specialist, I’m allowed to take less breaks from the pill than usual. Which means that I currently have planned periods every tenth week, instead of unplanned ones every fourth.

So that’s that. While I’m absent of any relevant symptoms, there’s no motivation on anyone’s part to do the keyhole surgery that would decide the issue. I may or may not have endometriosis. I may or may not have a pre-existing condition that would influence travel insurance quotes and healthcare provisions. Who knows??

In the meantime, I’ve suggested to several people who’d complained of similar symptoms to mine that they ask their GP about endometriosis, and been right on more than one occasion. In the meantime, the average time for diagnosis in the UK is still 7.5 years. I couldn’t have gone through another seven years of that.

That’s why I’ve written this post. People should be aware of this common condition. They should know that extreme pain during or between periods isn’t usual, and talk to their GP rather than soldiering through. And GPs and other healthcare professionals should be able to recognise the symptoms outright, rather than waiting for their patients to suggest it to them. We need to raise awareness so that everyone can get treatment sooner, and so that more research can be done into the condition.

Now for some useful links.

  • The NHS page is a good place to find out the symptoms of endometriosis, especially if you think you might have the condition.
  • Endometriosis UK has some great resources for educating yourself and others about this condition. They also have personal stories on their website.
  • This article in the Guardian states that doctors were first issued with guidance about endometriosis only last year.

One thought on “I May Or May Not Have Endometriosis: My Story

  1. I’m so sorry that you’ve had to go through all of this! I had a really hard time getting my syringomyelia diagnosis so I understand some of your frustrations. I hope that one day scientists are able to come up with a way for you to be diagnosed without having to come off of your pill or have keyhole surgery. Stay strong!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s