It took two thirds of my life to diagnose me with endometriosis

Suzanne spent 22 years with unexplained, agonising symptoms, but her diagnosis was just the beginning of another difficult journey

This story appears as told to Wellbeing of Women, a research charity who invest in pioneering health research for women and people with vaginas, and shared with The Femedic
 
 
It feels like my insides getting torn, like someone is stabbing and cutting and tearing them — you get this pain where you feel like everything is going to fall out.

I have to wear two night-time towels, overlapped, during the day and I have to change them every hour and a half. One time, I drove to work and had leaked right through by the time I had arrived — I had to call my husband in tears and ask him to bring me a change of clothes. You feel totally embarrassed and vulnerable.

I was always told it was a bad period. Doctors gave me the pill to control its regularity, mefenamic acid to control the bleeding, and painkillers. I was put on all of that when I was just 12 years old.

I got tested for everything; I had bloods, urine, swabs, smears, internal exams, and ultrasounds, and they couldn’t work out what was wrong. I even had a laparoscopy — keyhole surgery to examine inside my abdomen — but they said everything was fine.

During this time, I went off the pill and had the contraceptive injection, but afterwards my periods were still very heavy and painful.

I signed a form that told them they could take it out if they needed to, and I felt like I was signing away part of me — a part of my future. The part of me that’s so desperate to be a mum

When I was 33, I saw a GP who told me about endometriosis. They referred me to a gynaecologist who looked at the notes from my previous surgery and saw that there had actually been signs of endometriosis this whole time, and that my ovary had actually been stuck to my kidney.

I felt failed. When I asked the gynaecologist why I had been fine after the operation, he said it was because the contraceptive injection I’d taken had a “masking” effect — my body hadn’t known what was going on.

In 2018 I had another laparoscopy. Before the surgery, they said they might have to take one of my Fallopian tubes out because it had become so damaged, which isn’t what you want to hear when you want to start a family. I signed a form that told them they could take it out if they needed to, and I felt like I was signing away part of me — a part of my future. The part of me that’s so desperate to be a mum.

After the operation, the gynaecologist officially diagnosed me with endometriosis, and reassured me that it wasn’t all in my head.

The disease was so advanced that they hadn’t actually removed any of it — it had fused my bowel and womb together, it was on the back of my womb, in the ligaments going out of my back, in my pouch of Douglas (a space between the womb and rectum), and on the outside of my bladder: basically, everywhere in that area. I was 33 years old when this happened, which was 22 years after I first started getting symptoms. It took two thirds of my life, 22 years, to diagnose me.

I always get upset when I remember my husband’s face as we were being shown the photographs of my endometriosis — his head just dropped. He’d always been this person that was so positive.

I tried to take in all this information without breaking down and losing it in front of the doctor. They gave me medication that would help me ovulate

Luckily, they didn’t have to take my Fallopian tube out, and my ovaries were now free from my kidney, but they decided to put me into a chemically-induced menopause. This is when you take medication that causes a menopausal state.

Apart from stopping the bleeding it did nothing for me. The pain was still there 24-7, only now I had hot flushes, cold sweats, trouble sleeping, and other menopause symptoms too, so they took me off the medication again.

Starting a family

I’m so thankful that I have a supportive and understanding husband who will always stand by me. I met my husband when I was going on 27, and we’d agreed that we both wanted marriage and kids, though when we first tried getting pregnant nothing happened.

So as soon as the hormone replacement therapy (HRT) and everything else I’d been taking during my induced menopause were out of my system my husband and I started trying again.

When we both had fertility tests, I found out I also had polycystic ovaries, which is when the ovaries develop multiple, smaller follicles that do not mature properly — therefore preventing ovulation from happening.

I tried to take in all this information without breaking down and losing it in front of the doctor. They gave me medication that would help me ovulate that would be fine to take with endometriosis.

With all the years of pain – with periods, with endometriosis, with the laparoscopies I’ve had — this was the worst pain I’ve ever been in

That was in December 2019, and by the end of January 2020, my period hadn’t come. I thought: “I’m not going to get my hopes up, because I’ve had my hopes up before”. We waited a little longer and did a test.

I was so nervous I couldn’t look at it; I couldn’t look at the result. I made my husband look at it – and it was positive. We were ecstatic. Finally, the drugs had worked.

The following week I had a miscarriage. With all the years of pain – with periods, with endometriosis, with the laparoscopies I’ve had — this was the worst pain I’ve ever been in.

I was at work when it began. No one knew I was pregnant at the time, and I didn’t tell anyone what was happening.

My husband kept saying that it was okay, that we didn’t know anything yet, but I knew my body and I knew something wasn’t right.

I had a blood test, and we had to wait two days for a confirmation that we had lost the pregnancy. They were the longest two days of my life.

When we saw a nurse, she explained that the pregnancy could have been ectopic. She said that everyone’s at risk of an ectopic pregnancy, but if you have endometriosis your risk is even higher. This is an issue for people with polycystic ovaries, too.

I did the pregnancy test and gave it to my husband again so he could read it. We’d been disappointed so many times before; we were happy in February, but it was taken away again so quickly

She said because the miscarriage has already started, they weren’t going to do anything and wait for it to pass. However, the following week the bleeding hadn’t stopped, and the pain was getting worse. I woke up in the middle of the night screaming and in pain.

We went to A&E and I had so much morphine that they said they couldn’t give me any more, and I ended up in hospital for two nights. They told me I had lost the embryo.

The future

My husband and I agreed we’d wait a couple of months before trying again, but then the pandemic happened. Still, I started the treatment to help with ovulation again in July 2020.

I did the pregnancy test and gave it to my husband again so he could read it. We’d been disappointed so many times before; we were happy in February, but it was taken away again so quickly.

But it was positive — the treatment had worked just as quickly as it did the first time. We had scans at six weeks, then eight, then we got to the 12-week scan – and they said that everything was fine, that the pregnancy was not ectopic and was where it was supposed to be.

The first time I saw the embryo, it looked like a little Smartie on the screen. The healthcare professional told us we may or may not see the heartbeat, but that we could have a look. We managed to see the heartbeat.

That was me, straight away, in tears. It was overwhelming seeing their little heart going.

It has been a long journey to get here – it’s taken over five years – but I’m here, and I’m going to be having my first child. There is hope; there is a light at the end of the tunnel.
 
 
Wellbeing of Women are a research charity who work to develop new tests and treatments that have the potential to change, and save, many people’s lives. Endometriosis is one condition that their work focuses on, alongside gynaecological cancers, pregnancy and birth complications, and more
 
 
Featured image is an illustration of Suzanne, the narrator of this story. She wears a red-pink dress and has curled brown hair with a blonde balayage, against a decorative pink background
 
Page last updated March 2021

Monica Karpinski

Founder & Editor, The Femedic

Monica is the Founder and Editor of The Femedic. Against a journalism background and after years of leading content marketing projects in the healthcare space, it became clear that health information out there for women simply wasn’t good enough. No-one had bothered to look deeper into the ways women were searching for information, or consider the depth of what they actually needed to know. Instead of waiting for the perfect publication to approach her, she created The Femedic.

Monica has been named one of The Drum’s 50 under 30 for influential women in digital 2018 and was shortlisted for Female Entrepreneur of the Year in the 2018 British Business awards. She speaks and writes widely on gender and health inequality.

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