Living with endometriosis: Cassie's story

For Cassie Lomas, living with endometriosis has been a long and painful journey that’s affected everything from her mental health to her fertility. She shares her story to highlight the importance of greater awareness and education about the condition.

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

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I think I have had symptoms ever since I started my period at 13, which is 17 years ago now.

My periods were always very painful, but, at first, I thought it was normal. It was a few years before I realised something was wrong.

What was it like living with the symptoms before you were diagnosed?

From around the age of 15 I knew something was really wrong. None of my friends were having the same experience as I was.

By that point I had episodes of the most intense cramps even when I wasn’t on my period. I would be doubled over on my hands and knees, screaming and crying in agony. I could barely move. For days after I’d be exhausted.

Each time I would go to the hospital, but I was always told it was just period pains and that I would grow out of it. They didn’t even do any investigations.

From around the age of 15 I knew something was really wrong. None of my friends were having the same experience as I was

In between these episodes I was still in pain. I had a constant dull pain in my lower abdomen and back, sex was always painful, and I was tired all the time.

I spent seven years like this, with my pain and fatigue being dismissed as menstrual pain and part of being a teenager.

How did you come to be diagnosed?

I was diagnosed when I was 22. I’d been experiencing quite severe pain in the lower left side of my abdomen for about two years.

At first my doctor dismissed it as just part of growing up, but eventually I was booked in for a scan. This showed that I had a large cyst on my left ovary. I felt relieved, because it proved the pain was real and I wasn’t going mad after all.

I had surgery to remove the cyst and at first both my GP and surgeon said that the pain I’d been having all these years was probably from the cyst. However, at a follow-up appointment I was told that, while they’d successfully removed the cyst, they’d also discovered I had endometriosis.

What treatment have you had since your diagnosis?

Straight after diagnosis I was prescribed the contraceptive pill and told ‘you’ll be fine’. I still didn’t really know what endometriosis was and I had no reason not to trust my doctor so I thought that would be the end of my problems.

However, the pill did not agree with me. I bled constantly for three months until I was told to stop taking it. But even after that I didn’t feel I was given any advice about what to do next.

For a long time, the main treatment I had was co-codamol. Every time I went to the doctors about flare-ups, even after my diagnosis, I was just given painkillers and told to “see how you get on”.

I think the mental effects of endometriosis might be the worst part

Two years after my diagnosis, when I was 24, I started to get episodes of crippling pain again, just like before I had the cyst removed. That was when I started to do my own research and I found a surgeon that specialised in endometriosis.

I went to my GP and said I believed I had another cyst and pushed them to book me in for a scan. The scan showed I was right, I had another cyst, and this time I made sure that I was referred to the specialist I had found at a different hospital.

The specialist sent me for an MRI and I then had surgery to remove the cyst, which was the size of a grapefruit. After the procedure, I was told I would need another operation in six months’ time as he had discovered that I had stage four endometriosis.

What was your experience of having surgery for endometriosis?

I had my first surgery specifically to remove endometriosis when I was 25, although it was my third surgery overall.

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People think endometriosis just affects your reproductive organs but that’s not true. Endometriosis growths can stick your organs together – often called ‘adhesions’ – and this is what had happened to me to quite some extent.

I even had to have an appointment with a stoma nurse because they thought I might have to have a part of my bowel removed due to damage from endometriosis. I was lucky in this respect, my bowel stayed intact.

However, in other ways I was not lucky. I ended up on a high dependency ward because I lost a lot of blood and I also developed an infection. I was in hospital for five days after surgery.

After surgery, I was put on Prostap injections for six months. The injections aim to slow the progression of endometriosis by creating a false menopause.

For me, the times when I was on Prostap were relatively pain-free. But the side effects were, at times, just as bad. I really struggled to handle the hot flushes, my mood was all over the place and I often felt low.

Have you had further operations since then?

By the time I was 28, I was in constant pain in my stomach and my legs and I struggled walking very far.

I went back to see my specialist and he arranged another MRI, which showed that my endometriosis had spread again and that my ovaries were stuck to my bowel and my womb. Another scan showed that my fallopian tubes were swollen and blocked.

I was told that my chance of having a baby was extremely slim – and impossible without IVF. I was devastated

At the time I was hoping to start IVF but I was told I would need surgery first. When I woke up from the operation, I was told they had had to remove my left ovary and tube.

A week before surgery I had been told that I would not be allowed IVF on the NHS, and now I was told that my chance of having a baby was extremely slim – and impossible without IVF. I was devastated.

I left hospital the day after surgery, but a few days later I was readmitted with internal bleeding that led to a bad infection. I was back in hospital for nine days.

After this I was put back on Prostap injections. It’s now been five months since I had surgery, the Prostap is wearing off and I have been put on a different contraceptive pill to stop my periods.

How does endometriosis affect you physically?

Right now, I am starting to feel the same pains and symptoms I had last time my endometriosis returned. I feel certain it’s coming back and I honestly don’t know what is next in my journey.

Physically, I feel drained most of the time. The fatigue is one of the hardest things I have to deal with. I can wake up feeling refreshed and yet a couple of hours later, I’ll feel so exhausted that it takes all I have just to hold my head up. No matter how much sleep I get, it doesn’t stop the tiredness.

The pain is something I have just learned to live with. Sometimes it is eased by my heat pad or co-codamol. Sometimes they don’t even touch it. I don’t have any magic tricks that help me cope, I just do because I don’t have any other choice.

How has endometriosis affected you mentally?

I think the mental effects of endometriosis might even be worse that the physical ones.

No one seemed to understand what I was going through and I felt very lonely”

In the beginning, before my diagnosis, I thought I was mad. I was told it was just a normal part of growing up. I felt like a wimp, as if I just had a low pain threshold and just couldn’t handle period pains like other girls. When I was exhausted, I thought, maybe I am just a lazy teenager.

No one seemed to understand what I was going through and I felt very lonely.

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One of the most challenging things since my diagnosis has been its impact on my fertility. Because of this illness, I can only have a baby through IVF.

Normally, if you have endometriosis you can get one round of IVF funded on the NHS. However, because of where I live (Staffordshire) and because my partner has two teenagers, I won’t get funding.

I have always wanted to be a mum and to find out that I may never be one has broken my heart. It is something I am still struggling with.

When did you start reaching out to other sufferers online?

I started to speak to other people with endometriosis about a year ago. I actually tried to start my own online support group, but I discovered that there were already some amazing ones out there. They have helped me to feel less alone.

I haven’t had any professional support to help me come to terms with my illness or with the chance I might not have children, so speaking to other sufferers online has helped with the loneliness that comes with this disease.

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

My advice for other women is to listen to your body. If you think something is wrong, keep going to the doctors and make them listen. Don’t give up.

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If you don’t feel you are being listened to, do your own research and push to see someone who will listen. My experience with doctors hasn't been good but I am so glad I did my own research because the specialist I am under now has been amazing.

Don’t be afraid or embarrassed to talk about it because the more we speak up the more we are heard.

I wish I had been taught about endometriosis in school. It might have helped me to understand what I was going through. It’s so important to raise awareness and education because early detection can make all the difference.

I just can’t help but think, if I had known about endometriosis, if it had been caught earlier, there’s a chance I could have been a mum by now.

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