Clare Cameron's story

I started my periods at 12 and had always suffered with bad pains, but it was when I was 15 that I started to question the normality of it.

"It was an

embarrassment but

I just put it down

to bad luck"

One minute I would be absolutely fine, next the pain would hit me. It was like a little gremlin was inside my stomach with a blowtorch, slowly moving back and forth. If I went pale, then I knew was in trouble. The unpredictable nature of this disease would take full of hold of me. I had no choice but to ride it out, there was no escape. I never knew when it would strike but I knew this ‘normal’ part of being a woman would manipulate my whole body, making me helpless and weak. All I could do was rifle around in excruciating agony until it passed. Sometimes it passed quickly, but then it would return instantly after a brief pause. Sometimes it would stay for hours and hours - first the pain, and then what would come along with it; I would go white, break out into a cold sweat, start shaking and be unable to stand. It was an embarrassment but I just put it down to bad luck.

Each doctor would just give me a new set of medication to try, but not one of them bothered to delve deeper despite the fact I had been suffering with the same symptoms for years. It felt as if no one cared and it seemed like they didn’t want to know. It didn’t matter to them how much school I was missing. Overall so much of my education has been missed due to this condition, and it was not until my last year of university that someone finally listened.

I saw a doctor who specialised in the field and for the first time, someone listened. I opened up to her and told her about how my hormones made me feel crazy – I even admitted that only a few days before I had threatened to shave my head with a BIC razor because my partner had muddled up the times of our hairdressing appointment. The doctor put me on a different pill which helped me hormonally but the pain was still intense. So I made another appointment and told her that sometimes it made me bed ridden and she shook her head, ‘that’s not right; I am referring you to the hospital.’ I was relieved but scared, what if it as something sinister, like cancer? I explained my worries to the doctor and she reassured me. The door had opened and after five years of going to doctors and saying the same old thing, one doctor finally listened. My journey was far from over but thanks to her I had the recognition I deserved and steps were actually being made to find out what was wrong with me.

Although I was pleased to finally be referred, I was still full of dread and apprehension. Questions kept resounding in my head; ‘What will they find?’ ‘What questions will they ask me?’ Will they examine me?’ Refreshingly, the specialist was not like the majority of the doctors I had seen in the past, she asked a lot of questions and I felt like someone was listening. This is when I first heard the word endometriosis being associated to my symptoms. I was so relieved to know it wasn’t all in my head. I was put on a tricycle pill (the pill is taken three months continuously and then a week break) and that played havoc with my hormones, I could be crying my eyes out for no reason one moment and screaming my head off the next. Not knowing what was wrong was frustrating, I was feeling unwell and as the symptoms are not always physical people did not seem to understand, I didn't even understand! There was only two weeks out of three months that I felt myself and after six months of the high and lows I was at the end of my tether.

After having such a positive experience at my last hospital appointment, I felt I had the confidence to be completely honest about the new treatment.

Clare, left, with her partner

The registrar reassured me that what I was experiencing were normal hormonal effects, and we came to a compromise. She was to arrange for me to have a laparoscopy, and I agreed I would stick with the treatment until after the operation. I felt very nervous as I had never had an operation before, but I felt relieved. I would be one step closer to knowing what was wrong, even if they didn’t find anything at least the elimination process would begin.

After the operation, the doctor confirmed that I had endometriosis. Even though I felt away with the fairies due to the anaesthetic, a mixture of emotions surged through me. In one aspect I was happy I had been diagnosed - that was it now, no more guessing, I was no longer seen as a hypochondriac. I felt even better to hear that it had been treated so I would hopefully be seeing an improvement in my symptoms, at least until it grew back. But I also felt condemned. I had a chronic disease that was never going to go away, I was scared that I may not be able to have children, which was something so important to me. I was also disheartened by the fact that I would have to carry on with the pill treatment as what they found was considerable. All I could focus on was getting better and wait for my review in six months. As I left the ward I knew this would be the turning point in a very long battle.

"Women need

to be aware

that it's not normal

to be in immense

pain every month"

At home I felt helpless. I needed help getting out of bed, I frequently needed the toilet and found it impossible to bend. My stomach was so heavily bloated and inflated due to the trapped gas, I looked like I was expecting. When the gas tried to escape my body it went straight to my shoulders and diaphragm, which was incredibly painful. I was signed off for two weeks and slowly recovered, finding I could do a little more each day. I was lucky to have support from my colleagues, but found it hard and somewhat embarrassing explaining why I needed the operation.

Now two months on from my operation I have done my best to learn as much as I can about my condition by buying books, becoming a member of the Endometriosis UK charity, researching diets and complementary therapies. I have been lucky to have such a great support network around me; it was not so long ago that I felt no one (including myself) understood what was happening to me. I suppose I should class myself as lucky considering I was diagnosed within six years of first seeing a GP as opposed to the average of eight. There needs to be more understanding of this condition that affects almost every day of my life and probably so many other women who haven’t been as lucky as I have in getting a diagnosis. More women need to be aware that if they are in immense pain every month, it is not normal and they need to persist to get the treatment they need. No woman should wait the six long years I have to get diagnosed, which is much longer in some cases. More education is vital.           

My biggest hope is that I can have children in the future and that there will be more support and knowledge available for sufferers and people who suspect they may have something wrong, not to mention the family, friends and partners who are also affected by it. I am trying my utmost not to let this disease win, and one day hope I can support other women with the condition.