Anna-Maree was 12 years old when she started to menstruate. Her first few periods were painful with heavy bleeding. Her GP told her that this was fairly common for young girls and that it would settle down in three or four months. Unfortunately her pain did not improve — in fact, it got worse.
She would experience dull pain for about for one week before her period was due. This dull pain would then develop into a sharp, stabbing pain one day before her period and would continue throughout the whole time she was bleeding.
Her periods were irregular — this means that the bleeding could come every two or three weeks and last up to ten days. As well as experiencing pain and heavy bleeding Anna-Maree started to vomit, suffered from constipation and developed low backache.
Numerous visits to her GP over the next few months resulted in her being examined by specialist doctors for her backache and constipation. She was told that she suffered from an irritable bowel (spastic colon). The suggestion to take Panadol and eat a high fibre diet did not relieve her pain and other problems.
At this ti me the pain was so bad that she had to take two to three days off school each time she had a period. She was always worried about the pain and hated missing out on being with her friends.
Her family and friends were becoming increasingly concerned about her.
After two years of going back and forth to her GP she was finally sent to a gynaecologist who suggested that she take Ponstan. The gynaecologist said that if the Ponstan did not decrease the pain she would have to live with it.
Unfortunately, the Ponstan did not relieve the pain and so once more she turned to her GP for help. He suggested that she take the Pill for four months. She felt much better on the Pill but as soon as she stopped taking it the pain and heavy bleeding returned.
She continued to try and live with the pain and over the next year she read many medical books trying to find the answer to her problem.
At 15, just before she was about to set off on a school camp Anna-Maree again had extreme pain with her period. Her GP told her to keep taking Ponstan and to see him again if necessary.
After returning from the camp her period had finished but the severe pain persisted. After seeing her GP yet again, he suggested Anna-Maree have an ultrasound which was eventually performed five days later. The ultrasound revealed an ovarian cyst and possible pelvic inflammatory disease (an infection of the reproductive system). She was given antibiotic tablets to take.
The night after her ultrasound Anna-Maree’s pain became unbearable. She was admitted to hospital and was operated on the following day. She had endometriosis.
Anna-Maree cannot remember the details of her gynaecologist’s visit after the operation as she was still too sleepy to understand what he was saying. However, the gynaecologist spoke at length to her parents.
After reading about the Endometriosis Association in the local paper, her mother contacted the Association and had many of her questions answered. They recommended a book about endometriosis that would be helpful for Anna-Maree to read. Her family also read the book and at last they had some understanding of what she had been going through over the past three years.
Anna-Maree understood most of the medical terms in the book because she had received a good grounding in sex education at school.
After the operation, Anna-Marie was told to take Duphaston (a hormonal tablet used for treating endometriosis) for six months. The Endometriosis Association was able to give her information about the drug. She took two tablets a day but she started vomiting and suffered from dizziness. Her doctor suggested that she only take one tablet a day for two or three weeks.
This helped to reduce the side effects and she has not had any other side effects since, even though she has increased her dosage to two tablets a day again. She continued to have periods while on Duphaston.
At her check-up six weeks after the laparoscopy, Anna-Maree found her doctor understanding and happy to answer her questions. Unfortunately, she then was not given another appointment to see him for the six months while she was taking Duphaston. Anna-Maree feels that she would have liked the opportunity to have seen him during that time for support and further information.
None of her friends at school had heard of endometriosis. They wanted to know about the disease and how it would affect her. They wondered if the tablets would get rid of the endometriosis and if she would be able to have children later in life. Anna-Maree was very open with her friends and tried to answer all their questions.
Anna-Maree’s mother also contacted the school nurse who gave Anna-Maree’s teachers information leaflets so that they too could understand her problem.
Now 16, Anna-Maree has finished taking the Duphaston tablets and is waiting to have another laparoscopy to make sure that her endometriosis has been cleaned up.
What were Anna-Maree’s feelings
Anna-Maree was asked what her feelings had been during the last four years. Before she was diagnosed as having endometriosis she was confused. As a 12 year old she found it difficult to understand why she could not cope with the pain at the time of her period. None of her friends had to take time off from school. Was the pain really as bad as she believed it to be?
She was frustrated that a cause for her problems could not be found. Her mother gave her support and continued to seek doctors’ opinions. She felt that her elder brother was tired of her being sick so often and her father did not accept that she was unwell and thought that she was ‘playing on it’ to get out of doing her school work and chores around the house.
Anna-Maree felt intimidated by her doctors. They talked down to her and did not seem to understand how she felt.
Once Anna-Maree had been diagnosed she experienced different feelings. At first she was relieved to know that all her problems were not in her head — she was not making them up — they were real — she had endometriosis. She was frightened that endometriosis was a form of cancer and that she might die. She was quickly reassured that this was incorrect.
She then became angry. Why me? What have I done to deserve this? She was angry with her doctors. She felt that her GP had taken too long to send her to a gynaecologist. She was angry that he had not taken her symptoms seriously. She was angry at her gynaecologist who told her parents about the disease and not her — the one who was suffering. She wished that the gynaecologist had told her in private about the disease with plenty of opportunity for her to ask questions. She was angry with her mother. Was it hereditary? Was it her mother’s fault that she had the disease?
Anna-Maree also felt guilty that she had developed this disease. She questioned herself whether there was anything that she had done as a child to cause the endometriosis to develop.
At times Anna-Maree feels isolated because she does not know any other teenagers who have the disease. She would like to meet and talk with others of her own age. She feels that she now has the full support of her parents, brother, friends and teachers but she still wants to find out how other teenagers feel and cope with the disease and its implications.
Anna-Maree has found a great comfort in her dog. She can talk to her dog about her concerns and feelings and know that it will not answer her back!
She feels that she has accepted her condition but still has concerns for the future.
Anna-Maree knows that endometriosis can be treated but that it may recur. She realises that it may be an ongoing problem and that in the future she may have difficulty in becoming pregnant.
As a teenager she is concerned that she will not have control over her decisions. She wants to be able to listen to her doctor’s opinions, read as much information as possible and talk over her options with her family and others and then make a decision herself — a decision that she is happy with.
She is concerned that she may continue to have to take time off school each month, and that this may jeopardise her studies in the future.
Anna-Maree is not concerned about future relationships with boyfriends. She feels that she will be able to talk openly about endometriosis when the time comes.
She says that she is not going to dwell on these concerns but will take life as it comes.