I am writing this article during March, which is Endometriosis awareness month. It has been a positive campaign, with Bindi Irwin and others coming together to talk about their symptoms and often,sadly, how long it took them to get a diagnosis. Studies have shown it can take 7 ½ years to get a diagnosis, and with this is a delay in understanding and management of the debilitating symptoms.
So, what is endometriosis?
Endometriosis is deposits of tissue, similar to the tissue inside the uterus, found on organs, mainly in the pelvis, like the bowel, ovaries and bladder. It can, more rarely be found in the lungs. These deposits grow over time and may have the same cyclical change, including bleeding. The cause is poorly understood but there does seem to be some factors associated with developing it, including having a period before 11, heavier periods lasting more than 5 days, having a low body weight and having a family member affected by it. There is also a phenomenon called retrograde menstruation, where some menstrual blood flows up from the uterus along the fallopian tubes and into the pelvis, this blood contains fragments of womb lining, and in women with endo, this tissue can implant and grow.
The difficulty in diagnosis is due to many things. For many women, periods are accepted as being uncomfortable, but it is not ok to have periods that don’t respond to over the counter pain killers, and are so painful you are missing repeated days from school, or work, or social engagements. Symptoms of endometriosis can be very varied, ranging from painful periods, to pain on opening bowels, painful sex, heavy periods, problems getting pregnant, to no symptoms at all, adding to the general confusion in identifying it. Symptoms can also change for a woman through the years.
One of the biggest hurdles in diagnosing this condition is there is no simple test that can identify it. There is no blood tests and it is rarely seen on scans. The only way to get a definitive diagnosis is to see a gynaecologist and have an operation called a laparoscopy. This is keyhole surgery where a tiny camera can be inserted through the tummy button to allow the surgeon to see and possibly sample any abnormal tissue seen.
There is no cure for endometriosis, but it can be managed, and this management will depend on what your symptoms are, how bad they are, and whether you are trying to get pregnant.
- Good lifestyle really does help, this includes trying to get gentle exercise most days, maximising your immune system with good sleep, and stress management techniques for example meditation or gentle yoga.
- Pain management, if Panadol and anti-inflammatories aren’t strong enough, your GP will be able to discuss the use of other painkillers, if appropriate, for part of your management.
- Hormones, such as the contraceptive pill, can help by slowing the growth of the endometriosis tissue, and by stopping your period
- Surgery can help by diagnosing the disease and removing the patches of tissue, sometimes it may be necessary to repair damage caused by the endometriosis, including to the fallopian tubes, and ovaries. This can be done to help improve fertility. Rarely, it may get to the stage where organ removal is necessary, including hysterectomy and sometimes removal of some bowel or bladder.
Remember, most women (70%) with endometriosis will get pregnant without medical help, but some will need some assistance, so please talk to your doctor if you are worried about your fertility.
So, although you may be told that painful periods are normal, and feel you should be able to cope , if your periods are repeatedly impacting your ability to work, or go to school, or the gym, or out with friends, please come and see your GP. Living with any painful condition is exhausting and mentally draining and there is also help available with your GP, or counsellors, or support groups.
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Written by Dr Samantha Pethen, a GP at Your Family Doctors at Erina