Sarah Chambers' story

At the age of 13 I got my first period; I was overwhelmed. I had a twinge in my belly and at first I thought I had an upset tummy, so I ran upstairs to the toilet and there it was - a little speck of blood in my pants, a woman at last I thought.

I sat there for the rest of the day with a blanket and a hot water bottle. The pain was immense, I felt exhausted, sick, hot, cold, achy, and the shooting pains up my back were horrendous.

Seven days later my period started to fade away. I got lots of leaflets from the doctor and everyone told me to expect the next one in a month. The dread of that pain in only a month! Everyone said: ‘yes it hurts but when it is over your body feels so much better’. I just felt tired and grumpy all the time, never better.

"I gradually realised

that my periods were

different to other

girls I knew"

I gradually realised that my periods were different to other girls I knew. They were having only a small bit of pain and a little PMS but would be bright as a button when their period had finished. When I got my period I would have to have 2-3 days off school in bed, they were lasting 10 - 15 days, were very heavy and painful, in fact unbearable. I would feel exhausted, not grumpy but furious; I was irritable and would get very frustrated. I did not understand why it was so extreme but I knew something was wrong. I went to the doctors and they put me on the pill Microgynon to mild the symptoms.

I was about 16 when I decided that enough was enough. I could not live with what felt like constant torture. There was now not a day in the month that I did not have back twinges, constipation, bloating, tiredness, headaches, nausea or emotional torture. My mum took me to the doctor and my pill was changed. Six months later I was still wasn’t feeling any better. My mum was sympathetic but she’d always had bad periods and said you just have to get on with it. I was dissatisfied with this response so I took myself back off to the doctor.

The doctor discussed the female cycle with me in a very factual way. He said it sounded like I had a dropped ovary and I was sent away. I wasn’t happy with this response and lack of action so I started to do some research on the internet. People were saying I was a hypochondriac, but I ignored them, and it’s a good job I did. I came across a page on endometriosis and bullet point by bullet point I self diagnosed. I went down the list: severe period pain, back pain during menstruation, pain during sexual intercourse, painful bowel movements, fatigue, I had them all.

I was then referred to a gynaecologist. For support, I took my mum with me. I was 17 years old and I had read some very scary things about endometriosis to do with infertility. This should have been the last thing on my mind but a black cloud had been cast upon my future and affected me as much then as it does now. In the consultant room, my symptoms were discussed and I was examined. I was then referred for a laparoscopy which took place six months later.

As I was coming round in my hospital bed, the consultant told me the dreaded result – that they found extensive endometriosis. It was covering my abdomen, my pouch of Douglas and other areas, but luckily it was not in my fallopian tubes.

Because my endometriosis was so thick, and the consultants could not see the veins it was covering, they could not complete laser surgery. They also said because there was so much it would not be effective treatment anyway. I was shocked at the extent of my endometriosis but since that day I have never distrusted my instincts.

Since my diagnosis I have undergone many treatments. I was put on the oral pill back to back for twelve months, followed by a temporary menopause for six months. This was awful; hot flushes, cold flushes, weight gain, skin changes. The only benefit was I could relate to my mum - open a window, close a window! I was then put on Depo-Provera injection. Every 12 weeks, off I would go to have the injection in my left, then right bum cheek, very glamorous. During this time I had two more laparoscopies and in September 2007 I had an operation to cut away the endometrial scar tissue. Through the NHS I was referred to a pain specialist who had never heard of my condition, and after an examination wanted to put me on methadone to control the pain. But if I were to fall pregnant it could harm my unborn baby, so I decided against it.

"Reading other people's

stories on Endometriosis

UK really helps me"

After all of my treatments I would describe myself as a very up and down person, I have good days and bad days, I still feel constantly exhausted, achy, frustrated and I still suffer with stomach cramps, twinges, IBS and all of the other delightful symptoms that endometriosis presents you with. But my mum was right you just have to get on with it as best as you can.

For my symptoms and emotions, everyday is just another day to deal with them, I am very lucky to have such a supportive family and partner but even they loose patience with me at the best of times. I have been severely affected by endometriosis; it has changed me as a person in many ways. I do all the right things eat well, exercise but these emotions run deeper and they are unexplainable.

Reading other peoples stories on Endometriosis UK really helps me because for all these days I feel like and unstable crazy cow I feel normal for a few moments.