It's a disease often tossed aside by health authorities despite affecting tens of millions of women worldwide. It's a disease we don't know much about, a disease without cure. As Jennifer Paterson discovers, endometriosis is a crippling disease that is an enigma to its sufferers.
The endometrium is the tissue that lines a woman's uterus. Sometimes, however, this tissue develops on other parts of the body; normally through the reproductive system, but sometimes the endocrine system, as well as surgical scars all over the body.
Whilst this tissue is removed from the uterus, it still responds to the menstrual cycle in the same way. The tissue develops into a lesion, and every month the growth inflames before breaking down and shedding.
However, while menstrual blood from the uterine lining can escape via the vagina, the discarded tissue and blood from endometrial growths has no such escape route. This results in internal bleeding and swelling, and can lead to effects as arrant as infertility.
Causes - A Matter of Opinion
No research has been able to conclusively deduce the causes of endometriosis.
There are a number of theories, and the current thinking is that the actual cause is a combination of many of them.
Some theories include:
Retrograde menstruation (transtubal migration): Menstrual tissue becomes clogged in the fallopian tubes, implants on the ovaries, and grows - possibly because of a deficiency in the immune system or a hormonal problem.
Transportation: Endometrial tissue is shipped across the body via the blood or immune systems.
Transplantation: Tissue is accidentally implanted during surgery and manifests itself on the surgical scars. This theory has been debunked by cases involving scars located in areas such that cross-contamination during surgery would have been unlikely.
Heredity: A genetic link has been established.
Embryonics: This theory postulates that either the remnants of a woman's embryo tissues have become endometrial tissue in later life, or that some adult tissues have retained the embryonic ability to transform reproductive tissue.
Endometriosis affects different women in different ways. There are many symptoms, but not all are exhibited by all victims, and their severity does not reflect the severity of the disease itself. Some women may be chronically ill without displaying obvious signs of the disease.
The Bottom Line
Fortunately, because there is no rhyme or reason to the prevalence of the symptoms associated with endometriosis, there is one guaranteed method for diagnosis: a laparoscopy. This is a simple outpatient procedure where the inside of the abdomen is viewed via a tiny tube inserted through a small slit. In more drastic cases a laparotomy is utilised - a more heavyweight operation involving a fuller incision.
Katherine Humphreys, 25, had experienced many of the classic symptoms associated with endometriosis for over 10 years. "It took several years or so to diagnose, although I'd suspected something was wrong for that length of time. I started getting really bad period pain, waking up at 4am in a cold sweat, black outs, diarrhoea, vomiting and hyperventilation - all from about the age of 12."
Katherine went to several doctors, all of whom said she was normal (as she had regular periods and no spotting). It was only after her older sister was diagnosed with the disease, and operated on, that she was referred to a specialist. "It was quite bad for my sister, she had multiple adhesions - on her bladder, bowel and spine."
Katherine was examined using a speculum and ultrasound probe. This was combined with her past medical history to finally diagnose endometriosis. Katherine was put on the pill, and has noticed an enormous improvement in her periods. "Just about all the really bad symptoms have disappeared. I may need to be operated on at a later stage, but at the moment things are looking promising."
While Katherine realises her endometriosis may affect her long term fertility she remains positive. "My sister has managed to carry two children successfully, which gives me a lot of hope that I may be able to as well."
The Next Step - Treatment
Endometriosis is incurable. Treatments to alleviate the trauma of the disease vary, and a combination of many - tailored to the individual- can be utilised with a good deal of success.
Treatment for endometriosis is geared towards the patient's goals. For example, a gynaecologist is the ideal specialist if the patient seeks to ease the pain, the growths, and the recurrence of the disease. However if the patient wants to lower the risk of infertility, then she should consult a reproductive endocrinologist.
There are many drugs available, ranging from over-the-counter painkillers to more serious hormone therapies; such as GnRH (Gonadotropin-Releasing Hormone) acetates, synthetic hormones, and some contraceptives.
Surgery seeks to eradicate growths and is used to relieve pain and in some cases bring about pregnancy.
Techniques utilised range from a laparotomy through to a more serious hysterectomy, and the removal of ovaries.
Some women have dabbled in alternative medicine with varying success. Acupuncture, herbal medicines, massage, homeopathy, and nutritional approaches can all ease the patient's suffering.
Old Wives' Tales
Perhaps because there is little proven treatment for the disease there are a number of mythical cures for endometriosis, most notably hysterectomies and pregnancy.
Neither are cures for the disease. Hysterectomy may reduce pain for some women, but will not fully rid the patient of the disease. In addition, the drugs employed post-operation may not be suitable for some.
Pregnancy is unfortunately not an option for the 40 per cent of women with endometriosis who are infertile. Many women are able to carry to term, however not all of these experience relief from monthly cramping while with child. In nearly all cases, the pain of endometriosis returns to its former severity after pregnancy.
There are many unknowns to endometriosis. Thankfully there is now a nascent army of online support groups out there. If you need help with this crippling disease, your first stops should be the Endometriosis Association, and the Endometriosis Research Centre