What Surprised Me Most About Laparoscopy for Endometriosis

All I remembered was screaming at the nurses to make it stop. Make the pain stop. Begging them to take the pain away. I could feel that I was in a warm pool of liquid —they told me it was blood — and I freaked out more. Then, as quickly as I became aware of my pain and surroundings, I slipped away.

It’s a few hours later when I finally come round from anesthesia and the pain meds. Two nurses help me use the commode, they soothe me as I throw up and I get back into bed… any dignity I had left somewhat gently stripped away.

My phone is cluttered with notifications from my family and my now husband. Where am I? Am I OK? What’s taking so long?

I don’t know why a 45-minute procedure took so long — they just told me in my sleepy haze that it had taken double, maybe even triple, the amount of time they expected. I feed this back to my family by way of a woozy voice message because there’s no chance I’m making a coherent text message.

A few snacks later I feel much better. I call my husband and we’re interrupted by a doctor who comes to debrief me on the operation.

It went well, apparently, and they found endometriosis. I start sobbing. My pain had finally been validated and on the horizon was the pain-free (or significantly reduced), light period future my surgeon had assured me of.

Or so I thought.

It would be four months later that I would realize something was wrong. I was still taking a birth control pill and recovering from my surgery in Iceland with my husband. I went to the toilet one afternoon and there was blood. I was perplexed as I was quite far into my pill pack, not due a bleed for a good few weeks, and if there’s anything my periods actually did well it was to be on time — one of the reasons I was never taken seriously.

I put in a tampon and returned to my husband in the bedroom where I proceeded to be overtaken by abdominal pain and nausea. When I later returned to the bathroom, I realized that this was no ordinary period. To try and not be too graphic I’ll leave the description at this — imagine a red lava lamp.

This was not normal for me, even with endometriosis.

For the next week, I would bleed heavily and pass huge amounts of tissue and when I did finally mention it to a doctor, she referred me to gynecology at the local hospital.

I met my gynecologist who is lovely and deserves a lot of credit for how he’s helped me so far. We changed my birth control pill to another one, did a pelvic exam and ultrasound and I went on my merry way, reassured that the bleeding likely wasn’t anything serious.

A few issues with this medication later, I found myself calling my gynecologist and asking what else I could do.

See, I tried a few pills and hadn’t gotten on with any of them. He suggested I try a medication that is paracetamol with a muscle relaxant for my pain. We discuss my future because I ask him what endometriosis treatment looks like in Iceland and he tells me there is one specialist clinic in the capital of Reykjavík. We do not live in the capital — we live about five hours away in small-town Iceland.

I expect nothing more of the conversation until I’m woken by a phone call one morning. The caller ID says it’s from the national hospital in Reykjavík and I’m stumped as to why they’d be phoning me.

“Hello?”

“Hi, is this Melanie?”

“It is.”

“You speak English, yes?’

“Yes.”

“OK! I am calling from the endometriosis clinic in Reykjavík.”

I nearly sobbed because until that point, I had been continually let down by doctors where my pain was concerned. I am 99% sure I did not hear my gynecologist tell me he was referring me to the specialists in the south. He just did it. I didn’t have to beg or plead with him. In fact, I didn’t have to beg or plead with the GP to refer me to gynecology in the first place — she asked if I wanted a referral!

Being from the UK — this kind of initiative and care is not typical.

The nurse on the phone and I get into a discussion and I say how I’ve been exponentially worse since my laparoscopy. She tells me that it can happen for some patients… their condition gets worse. Had I not been told this?

No. Nobody told me it could get worse.

I was sold the story that somewhere around 85% of women feel significant improvement from an excision surgery. And those odds are good, right? The other 15% apparently get little to no relief — but nobody said anything about things getting worse.

The nurse tells me that sometimes it’s less like 85/15 and more like 50/50.

My gynecologist has labeled me as a severe case. Six to eight months on from a trip south to see the specialist things are no better, so we’ve tried a different medication for endometriosis and are seeking the advice of the specialist again. As I sit here typing this out, I am having potentially the worst endometriosis flare-up of my life. I’ve now been prescribed an opioid pain reliever.

I am angry. Sure, even with knowing what I do now, I would take the surgery any day of the week. The diagnosis has meant that I have been treated really quickly in Iceland and not needed to pay an extortionate amount for a laparoscopy. I am angry at the fact I was not told that a significant decline in my health was a possibility. It wasn’t even mentioned on the consent form — just the usual risk of needing a hysterectomy, infection, and death. How do I make an informed decision when I am not told all the facts?

And this isn’t just something the endometriosis clinic in Reykjavík told me. My research in forums and subreddits has backed this up and told me new information I did not know!

Nobody told me it could take a year for my periods to return to normal. I learned that from Reddit and the specialist nurse I spoke to was horrified I was told I’d be fine and back to normal in three months.

How did I make an informed choice?!

This story isn’t to deter anyone from having a laparoscopy or an excision. I fully advocate for them because having that diagnosis is important and should help you get better help further down the line. Without that surgery, I wouldn’t be getting the help that I am in Iceland, and compared to the UK, I am getting fantastic support. I am so unbelievably grateful to the doctors here because I know that if I took these symptoms to my GP in the UK (because I’m not allowed to contact my gynecologist directly), I’d be gaslit and told to exercise more. Have I tried paracetamol?

On Wednesday I woke up and called the gynecologist directly. He called me back and the hormone add-back he prescribed was delivered to my door 45 minutes later.

Some doctors need to be more honest with their patients. Why was I not told that one of the risks of the operation was my symptoms getting worse? Surely I did not give informed consent? Why couldn’t they use the time they tried to convince me to get an IUD to properly tell me the full risks?

I’ve had to accept that I can’t change things though. I can only move forward and heal.