Living with endometriosis: Laura's story

How long have you been living with the symptoms of endometriosis?

I believe I’ve been having symptoms ever since I started menstruating at 14.

Everyone told me that heavy painful periods were normal for some girls, and I didn’t know any different, so I didn’t question it. But looking back now I know they weren’t normal.

Over the years, my periods got worse and I developed more symptoms. Eventually I had my diagnostic laparoscopy when I was 27.

What were your symptoms like before you were diagnosed? How did it affect your life?

Prior to my laparoscopy, I experienced a long list of debilitating symptoms - menstrual pain, heavy bleeding, pelvic pain, nausea and vomiting, constipation and diarrhoea, bowel pain, pain during sex, night sweats, fatigue, sciatic pain…

I found it incredibly difficult to cope. I could only wear loose clothing and I wore out a lot of hot water bottles. At home I relied on my partner for help with almost everything. At work I was struggling and having to take a lot of sick leave. In the end I made the very difficult decision to go part time.

What was your journey to diagnosis like?

By the time I was 24, my periods had become unbearably heavy and painful, so I went to see a GP.

Initially, I was told the same thing I’d been told when I was younger – that some women just get bad periods. But I insisted they were worse than ever before and the doctor gave me painkillers to try.

Over the next year and a half I would go back to see a GP every three months. Each time I would be given a different painkiller to try, perhaps a blood clotting medication, or a different contraceptive pill. Nothing really helped and eventually I was in pain all month long, not just during my period. At this point I was referred for an ultrasound.

Nothing showed up on the ultrasound, but at this point I had done research and found out about endometriosis. I had read that the condition often was not visible in an ultrasound. So, although my GP initially suggested trying the contraceptive coil (IUD), I pushed to be referred to a gynaecologist.

The gynaecologist agreed that it was likely I had endometriosis, and I was referred for a diagnostic laparoscopy, after which I received confirmation that I had the condition.

What treatment have you had since diagnosis?

I had laparoscopic excision surgery, where endometrial tissue was removed from my bowel, fallopian tube and pelvic wall.

The recovery from the surgery took a lot longer than I had expected. I went back to work after three weeks, but in hindsight I think I should have taken more time to recover as I struggled a lot at first. I was very tired and still in some pain from the surgery.

My first few periods were very heavy and painful, even more so than before my surgery, and I had a lot of irregular bleeding. All in all, it was about six months before I felt like I had fully recovered.

Now, I take the progesterone-only pill and luckily it has stopped me from having periods for now, which has made a huge difference to my quality of life.

I have also had further treatment with a gastroenterologist and a dietician, who have helped me to cope with my bowel symptoms, through both the use of medication and changes to my diet.

Have your symptoms changed since you had surgery?

Now, three years after my surgery, I have far fewer symptoms and the ones I do have are less severe. I am still taking a contraceptive pill, which means I don’t have periods anymore; although I still do have some cramping, pelvic pain and bowel pain.

I still experience fatigue and I’ve found that I must be very careful with my energy levels. I am still only able to work part time.

Ultimately I have learned that the best way to cope is to do everything I can to look after myself, so that if I have a flare up of symptoms, I have the energy to deal with it.

What ways have you found to cope with your symptoms?

I use a heat pad that I can wear on the go, which has really helped me to cope.

Because of the fatigue I experience, I try to make sure I don’t overdo it at any point. I eat well and I avoid foods that I have identified as making my bowel symptoms worse.

Ultimately, I have learned that the best way to cope is to do everything I can to look after myself, so that if I have a flare up of symptoms, I have the energy to deal with it.

How has living with endometriosis affected you mentally and what ways have you found to cope?

Before diagnosis, living for years with chronic pain and fighting to have my illness taken seriously was mentally exhausting. It made me feel like I was losing my mind.

When I got my diagnosis, at first, I was relieved, even happy. I finally had answers and knew what was wrong. But not long after this, I went through a phase of grief, depression and anger.

Endometriosis has turned my life upside down; every aspect of my life has been affected by it. My social life, my relationship, my career, my finances, my confidence and my sense of self.

I felt betrayed by my body and I felt a sense of loss for the life I lived and the person I was before the symptoms of endometriosis took over. I also felt terrified about what my future would be like living with the condition.

It’s so important to know that endometriosis is not just a gynaecological disease. It can affect a lot of other organs and cause a lot of different symptoms.

It was at this point that I came across an online support group. Connecting with other people with endometriosis, hearing their stories and getting their advice, really helped me to come to terms with my diagnosis.

I still struggle sometimes, when I think of the ways my life has changed and the things that this illness has kept me from being able to do. But the group gives me a place to vent to people who understand what I’m going through, and it has also given me the amazing opportunity to offer my advice and support to others.

Do you have any advice for people who have (or think they have) endometriosis? What do you wish you had known at the start of your journey?

Trust your instincts, you know your body better than anyone. If something doesn’t feel right, don’t let anyone dismiss you.

See another doctor, get another opinion, demand proper treatment.

Also, it’s so important to know that endometriosis is not just a gynaecological disease. It can affect a lot of other organs and cause a lot of different symptoms. In fact, it often needs to be treated by a team of specialists. It’s so much more than just bad periods.

I wish I had known about the existence of endometriosis when I was younger. I wish I had been taught properly about menstrual health in school. It’s something everyone should learn about, so that it can be diagnosed early and treatment can begin as soon as possible.