Here, Suzanne describes her experience of living with endometriosis.

Every time I have a period, it feels like my insides are being torn, as though someone is stabbing, cutting and tearing them. You get this pain where it feels like everything is going to fall out because there’s this pressure pushing it down.

Due to heavy bleeding, I have to wear two night-time towels, overlapped, during the day and I change them every hour and a half. On one occasion, I drove to work and had leaked right through by the time I 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.

Problem periods from the beginning I was always told I was having a bad period and to give it time for it to settle. At the age of just 12 years old, I was given the contraceptive pill to control the regularity of my periods, a medicine called mefenamic acid to control the bleeding, and painkillers.

I was tested for everything. I had bloods, urine tests, swabs, smears, internal exams, ultrasounds, and the doctors couldn’t work out what was wrong.

After stopping the pill, I had the contraceptive injection, but after a while my periods were just as heavy and more painful than before.

Later that year, in 2016, I was finally diagnosed with endometriosis. The gynaecologist said: “It’s not in your head, and it’s not a bad period.”

Signing away my future

In 2018, I had another laparoscopy, and they said they might have to take one of my fallopian tubes out because it was so damaged. This 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 a part of me – a part of my future.

I met my partner, Martin, when I was 27, and we agreed we wanted marriage and kids. When we were engaged, I was 31 and we tried getting pregnant, but nothing happened. On the day we were telling everyone we were engaged, my period came – and it was all over the place, there wasn’t a proper cycle to it. It was just as heavy and the pain was worse than before.

The doctors said I couldn’t get pregnant until six months after the repeat laparoscopy operation, as I needed to heal.

My endometriosis was stage four and, unfortunately, it couldn’t be removed because my womb and bowel had fused together. Luckily, my fallopian tube didn’t have to be removed and my ovaries were free. I was told I had it on the back of my uterus and into the ligaments going out of my back, in my pouch of Douglas, an area between the womb and rectum. I was diagnosed with rectal vaginal endometriosis – one of the most severe and painful forms of the condition. It was everywhere.

Early menopauseAlongside hormone replacement therapy (HRT), I was put into a chemically induced menopause, but the pain was still there, and this time with menopause symptoms, such as hot flushes and trouble sleeping.

I was taken off the menopause medication and referred to a rectal surgeon to see if the endometriosis was on the inside of my bowel, but after a long waiting list, I was relieved when it wasn’t found.

As soon as the HRT and everything else was out of my system, my husband and I started trying to get pregnant again – we felt we’d been delayed because of the chemically induced menopause and the surgery.

In 2019, my husband and I had fertility tests. My husband was fine, but my urine samples showed that I wasn’t ovulating and I had polycystic ovaries as well. In December, I was given medication to help me ovulate.

Raising hopes By the end of January, my period hadn’t appeared. 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 then did a pregnancy test. I was so nervous I couldn’t look at the result. It was positive and we were ecstatic. I thought that, 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 – this was the worst pain I’ve ever been in. I went to A&E, and the nurse said that the pregnancy had been ectopic. She explained that the risk of an ectopic pregnancy is even higher if you have endometriosis and PCOS.

Martin and I agreed we’d wait a couple of months before trying again. Then Covid happened. We had to wait until July 2020 to start fertility treatment again, after the first Covid lockdown. Fortunately, I became pregnant and we are now proud partners to a beautiful girl called Lily.

While my story has a happy ending, there are many women struggling.

The more research there is, the more likely it is women will be able to avoid early menopause, multiple surgeries or coils, injections and implants in order to have some quality of life.

Research is really important but education is too. I’ve had endometriosis since the age of 11 and it took more than two thirds of my life, 22 years, to diagnose me. The average for women is 7.5 years. This is unacceptable.

I wouldn't want my daughter to go through this.

Suzanne shared her experience and took part in our ‘Let’s Talk Periods’ webinar series. You can watch the recording here.

March is Endometriosis Awareness Month. For more information, please visit our dedicated webpage. To donate to our ongoing research, education and advocacy work on women’s health, including endometriosis, please click here.