(C) Kathie's Pain 2001
My name is Kathleen King; I am 29 and work as a Medical Scientist in my local hospital. My experience with endometriosis has made significant changes to my life and taken me down paths I may not have otherwise encountered. I have chosen to challenge my endometriosis and use the anger, fear and frustration associated with this chronic condition to help change the awareness and support systems in place for women with endometriosis. At the age of 12, I had my first period.
The day this occurred is a very vivid memory; I developed back pain that morning on the way to school, thinking I had just hurt it I really did not give it much thought. Later that evening I was walking home from town, by then the pain had worsened, so much so that I could hardly walk and ended up sitting on the side of the road. When I got home it was just unbearable, I did not know why. In the hours following, I discovered that I had started my period. I wasn’t upset or happy – the pain was the main factor here.
Seven days later, I was wondering if this would ever go away. I was passing a lot of blood and clots and the flow was extremely heavy. Surely this could be expected with a first period? Well maybe, but month after month this reoccurred. The menstrual flow was so heavy that I would have to wear both tampons and sanitary towels and change them on almost an hourly basis. I could not wear anything light coloured, or sleep without protecting the bedclothes.
This continued, I was tortured, but did not know that this was particularly abnormal. Other girls at school did not have this experience, they did not seem to suffer as I did, and they certainly did not bleed for seven to ten days at a time. I began to realise that my cycle was different. As I had an interest in medical issues it was logical for me to investigate this further. The pain was significant, and no painkiller seemed to touch it. At this time I was suffering from migraine, I was attending my gp. I had read about painful periods and how the GP could help. So I asked, and asked and asked. I was given prescription after prescription of painkillers of varying sorts. These had no effect on the pain – at best they could only take the edge off it.
By the age of 16, I was missing time from school every month. I was suffering severe pelvic, back and leg pain for up to two out of the four weeks of my cycle. I knew something had to be wrong, despite my GP feeling that I was looking for time off school. My cycle was always 30 – 32 days, heavy bleeding for 7-10 days. Midcycle pain would kick in around day 14 and last for a few days; the pre period pain would start in the days preceding menstruation and then follow through. I experienced bowel symptoms with my period similar to irritable bowel syndrome. I was extremely tired. At times I felt that I was going to die. I had read about dysmenorrhoea in a medical text book, and the different types, primary and secondary. The symptoms of secondary dysmenorrhoea matched my experience, I was shocked – could I finally have an answer. The recommended treatment was the oral contraceptive pill! Went promptly to my GP and asked for the pill to be prescribed for the treatment of dysmenorrhoea, after much debate she finally prescribed it. I was excited at the prospect, now 17 I needed the break.
The contraceptive pill was amazing after the first month, I only bled for a couple of days – and it was so light, it was hard to believe. I still had pain, but it was a relief. Unfortunately this did not last, over the next few years I went through various types and brands of the pill in order to find one that would work. One that would stop the pain, lessen the menstrual flow and give me the break I desperately required. This was not to be; while the oral contraceptive pill is a successful treatment for women with dysmenorrhoea and menorrhagia, it was not successful for me. During this time I had met a woman who had told me of similar problems that culminated in radical surgery to remove her uterus, fallopian tubes and ovaries. She had endometriosis. I had read about this when I researched secondary dysmenorrhoea. Her symptoms were so similar, surely I could not have endometriosis – the text book said it mainly affected women over 30 and was usually discovered during investigations for infertility. I was 17, could I possibly have endometriosis. I researched some more, the more I read the more I was convinced that this was my diagnosis.
This sounds like typical hypochondriac behaviour! I approached several GP’s during this time and pleaded for further investigations. Each one took the same approach, pain is normal around period time; you are too young to have anything wrong, heavy bleeding is subjective etc… The most frightening part was the advice to have a baby – that would cure my problems! Fortunately I did not heed any of this rubbish; I was determined to be heard. I finally managed to get an ultrasound; this showed a small ovarian cyst. Ultrasound cannot diagnose endometriosis. It can show the presence of cysts however. For endometriosis to be diagnosed it requires a laparoscopy, a surgical procedure where a scope is inserted into the abdomen in order to view the pelvic organs. There was little chance of having a laparoscopy done; my current GP said it would be impossible for me to have endometriosis, and to quit reading about it. My breakthrough came when I was on student placement in a new town, after missing time through out the first two years of college due to this pain, I decided enough was enough. After being at college, this was the first year I had money as we were paid a training allowance. I knew if I wanted a laparoscopy – I would have to pay. A consultant was recommended by a friend, he was in a City nearby. I asked my new GP could I have a referral, she declined and said that she was happy that there was nothing wrong with me.
I asked her to write this in the letter she would then send to the consultant gynaecologist, I would have to go privately – that way it made it more difficult for her to refuse. I seen the consultant, he agreed that endometriosis may be a possibility and scheduled a laparoscopy. My laparoscopy date was the 27th March 1997, I was 20 – eight years and three months after menarche – I had a diagnosis. I had waited all day in the ward for this surgery, anxious and worried that they would not find anything – that I was indeed mad. Was this all in my head? I was told often enough it was. I was finally called to theatre, I was ready.
My consultant popped his head around the curtain as I lay in the bed still groggy from the surgery; he had a smile and told me yes, you have endometriosis. I was never so happy or relieved! Not the usual emotions associated with the diagnosis of a chronic condition – but when you have battled so long without a name it is the best word you will hear! I then started on further treatment, more oral contraceptive pill and more problems! I then moved towns to continue my degree, my GP there prescribed Provera, a progesterone treatment. This treatment, like all came with side effects. I was unfortunate; I suffered from severe mood swings, fatigue, depression and weight gain. I was on this treatment for 9 months; I could not bear to come off it. On the treatment I had no periods, therefore the pain was vastly reduced. I could attend college and start to feel normal. I knew that if I could take the treatment for the college term I could get through my exams. The Provera had terrible side effects for me, but faced with them or the severe period pain – I chose the Provera. Eventually the pain was returning, and the side effects were unbearable not just for me but for everyone around me. My consultant asked me to take a break from treatment, and see how my cycle returned. This lasted 4 months, it was living hell. The pain and bleeding were as they were before.
I was seen by the consultant again. This time I had my own suggestion for treatment, I asked for Zoladex injections. Zoladex is a monthly injection that switches off the ovarian function, effectively putting you into an induced menopause. It sounded like heaven, they were willing to let me try it, but only for 6 months, this is the maximum permitted by licence. This treatment was amazing; it suited my body and my type of endometriosis. I managed to loose weight and lead a normal life again. I still had some pelvic pain, but no where near the scale of the previous months or years. I went straight from Zoladex onto Depo Provera, which was given at two week intervals. Unfortunately this had similar effects to the Provera, despite the lower dose. Slowly the weight gain, depression and pain returned. I looked for an alternative – there didn’t appear to be anything else I could do. I met a gynaecologist online in a support forum for endometriosis, we chatted about my symptoms and she suggested the Mirena IUS. I researched this treatment, while not licensed for endometriosis it is licensed for menorrhagia and contraception. This seemed like a good progression. It was worth trying, I was nearly back to square one again. Combined with surgical removal of endometriosis deposits, I felt that it may be a viable treatment.
At 23, I had my second laparoscopy. I asked for a Mirena IUS to be fitted at this time, but was refused at my local hospital. It was felt that it was inappropriate for a woman who was not married, and not yet had children to have such a device. I then asked for a referral to Guys and St Thomas hospital in London, where I met my current consultant. She took my notes and fitted the Mirena IUS immediately. She scheduled a laparoscopy for later that year. At this laparoscopy she found and removed the visible deposits of endometriosis. The fitting of the Mirena was not without pain and torture, this lasted a couple of months while it settled down. I had gone to such lengths to have it fitted – I was not in a hurry to have it removed. Since then, I have had a further course of Zoladex and have had a further laparoscopy. The Mirena has stopped my periods completely, and as the progestin contained in the IUS is non systemic the side effects are minimal.
My endometriosis has not gone away, but is in a far less active state than ever before. I still have flare ups where the pain will become severe; I suffer extreme tiredness or experience bowel problems, dyspareunia continues to be a problem. I have missed time from work and also missed social occasions. I am happy with the Mirena as a treatment for me; it suits my symptoms and my lifestyle. I have the option of using Zoladex again in the future and also further surgery should it be required. The diagnosis of Polycystic Ovarian Syndrome came about after some investigations into weight gain and other symptoms such as excess hair growth. While my ovaries remain clear at present, I have the classical hormonal picture associated with PCOS.
When I was diagnosed with Endometriosis in 1997, a work colleague gave me a magazine article about a woman with endometriosis. It had a UK helpline number for the National Endometriosis Society; I called and received information and support. I later contacted the Endometriosis Association of Ireland and received a lovely letter – letting me know that I wasn’t alone. I needed a way to cope with the anger and frustration that my prolonged time to diagnosis had created. I contacted the National Endometriosis Society in the UK and volunteered for their helpline. I was brought to London and trained in helpline techniques. I began on the helpline in 1997 and have worked with the society ever since. The Endometriosis Association of Ireland and the National Endometriosis Society (NES) in the UK provide a valuable resource to women with endometriosis. They raise awareness and provide information. Recently, I have trained as a Self management tutor with the NES and deliver courses in Chronic Disease Self Management for women with endometriosis. This helps them come to terms with their chronic illness, learn new skills and develop coping strategies. It also covers communication and cooperation with the healthcare provider. I have acted as a local contact for many women with endometriosis or suspected endometriosis. The NES helpline also operates a referral system where callers can talk to someone with specific experience of a treatment. As part of my MSc in Biomedical Science I undertook a project to look at women with endometriosis. This looked at biochemical markers along with a questionnaire in order to determine a diagnostic pattern. The project and endometriosis information is on www.kathies-pain.com . Which has over 19,915 hits since September 2001.
Endometriosis is no longer perceived as a “career woman’s” disease. We now know that it can affect women of all ages. It is now up to women with endometriosis to educate their GP’s and consultants. We must dispel myths such as “A hysterectomy will cure you” or “having a baby will help”. We must also dispel the greatest myth of all – that women under 25 cannot have endometriosis; this myth has lead to terrible consequences. Women who have been misdiagnosed or not diagnosed until late in life, have suffered terrible pain and in some cases infertility. If endometriosis is detected early it can be treated and managed and the woman can make informed treatment decisions regarding her fertility. Many women have not been diagnosed until they present for infertility investigations, they may not have experienced any other symptoms.
Endometriosis can have life changing effects on women and their families. It affects ability to work study and socialise. As it can also result in infertility it can result in an emotional turmoil for the woman and her family. Chronic illness increases stress within relationships, both family and work relationships. It is vital that women are informed and supported; the Endometriosis Association of Ireland aims to support women and encourage members to set up local support groups similar to that in the UK.