Endometriosis: What it is, symptoms and treatment options

It affects 120,000 Kiwi women, but what is endometriosis and how can it be managed?

By Ellie Hooper
What is endometriosis?
Endometriosis is a common disorder that 1 in 10 women will be diagnosed with. However it is thought this number is actually far higher, with many being misdiagnosed with other conditions. The problem occurs when tissue similar to the lining of the uterus (called endometrium) is found outside the womb, causing intense pain, bowel problems and heavy periods.
This tissue involved can appear red and inflamed and form nodules and cysts elsewhere in the body. Most commonly, this tissue is found in the pelvic area such as in the ovaries, bowel, bladder and uterine ligaments, but occasionally it can form in other regions. This causes intense pain, bowel problems and other issues – and can cause a great deal of suffering for women who have it.
We spoke to Endometriosis New Zealand, who said it is an often overlooked condition.
"As a society we generally don't get concerned about girls and women who experience period pain and we still don't feel that comfortable engaging in the subject. However, many girls and women experience distressing symptoms with their period which can sometimes persist throughout the month.
"This is not normal. Endometriosis is one of the main causes of period pain and it starts young. The suffering is often silent but everyday function like going to the toilet can be excruciatingly painful. It can significantly impact on schooling, career, relationships, general well-being, mental health and even fertility downstream. Endometriosis is a major public health issue and we ignore it at our peril, because as well as the human cost, it carries a significant financial and economic burden to our country. We need to identity symptoms early and aim for timely intervention to improve quality of life and avoid the potential for fertility to be compromised."
Who can suffer from it?
Any woman from the age of their first period can suffer with endometriosis, and it has varying levels of severity.
Girls creator Lena Dunham revealed last year she'd had a lifelong battle with the condition, going through intense agony since her first period.
"From the first time I got my period, it didn't feel right," wrote Lena in her blog.
"The stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. Those might as well have been ads for yogurt or the ocean, that's how little they conveyed my experience of menstruating. During the worst of it, my father brought me to the ER, where they prodded my appendix and suggested it might be food poisoning and that we should go home and wait it out. My mother placed a pillow under my lower back, and I moaned in the guest room, where no one could hear me, my legs spread like a woman in labor.
"Throughout high school, I had irregular periods and hideous mood swings, but these were hard to uncouple from the looping thoughts of doom and crippling anxiety that had been a part of my life since early childhood, when I began to struggle with obsessive compulsive disorder. It was also hard for me to imagine that the same girl who counted her every breath and blink, who had to masturbate eight times a day or not at all, who was convinced she had leukemia because she was dizzy when she sat up too fast, was now suffering from an entirely separate medical condition. Even my eternally supportive and tolerant parents seemed dubious. And who could blame them? It was impossible for me to take my own pain seriously, so how could anyone else?"
You can read her full post about her condition on her blog here.
What are the symptoms of endometriosis?
According to [Endometriosis New Zealand], the symptoms include:
•pain with periods (dysmenorrhoea). Often the most common symptom
•bowel problems like bloating, diarrhoea, constipation, pain with bowel movements, painful wind (sometimes diagnosed as Irritable Bowel Syndrome)
•painful intercourse (dyspareunia)
•sub-fertility or infertility
•tiredness and low energy
•pain in other places such as the lower back
•pain at other times e.g. with ovulation or intermittently throughout the month
•premenstrual syndrome (PMS). This might make you feel moody, emotional or irritable
•abnormal menstrual bleeding
•bladder troubles like interstitial cystitis (IC)
It can also affect some women's ability to conceive, meaning they may require assistance with IVF.
Endometriosis can cause painful cramps
What causes endometriosis?
Despite being a common condition, it is not a disorder that is particularly understood by the medical world. Theories range from it being genetic, to lifestyle factors having their part to play. There are other theories about how endometrial cells can end up where they do – ranging from this happening after surgery to the area to menstrual blood flowing back into the pelvic cavity instead of out of the body.
How can you treat endometriosis?
Endometriosis New Zealand have some tips on how to manage your condition day to day, suggesting the magic trio of a good diet, exercise and plenty of sleep.
In particular, women with endometriosis should watch out for FODMAP™ FOODS, otherwise known as difficult to digest carbs found in milk, beans, soy and more. Other sufferers have reported that dairy, alcohol, caffeine, spicy food and highly processed food can irritate them, so avoid these too.
By avoiding these you can prevent some of the painful bowel symptoms often associated with endometriosis, an hopefully give yourself some more comfort.
Gentle exercise is also encouraged, as it releases endorphins which act as a natural painkiller. Start slow and don't do too much at once, and just be mindful that if symptoms actually worsen during exercise, it's probably a sign something else is wrong.
Something like yoga, pilates, or swimming are good options for when you're feeling delicate and not like you could throw yourself into running or touch rugby…
Accupuncture can help to relieve pain in sufferers
Treatment options
The treatment for endometriosis depends on how old you are, how severe it is and whether you plan on having children later down the line.
While there are no known medications that cure the disorder, you can take medication for pain management, or may be prescribed the Contraceptive Pill to help ease some of the symptoms.
Similarly, hormonal injections may be recommended for controlling it, or a device fitted inside your uterus which slowly releases hormones over a long period.
Some women prefer to use complementary medicine and supplements to ease their symptoms, and these can include:
• Massage – especially shiatsu
• Accupuncture
• Meditation
• Physiotherapy
• Chinese herbal medicine
Magnesium is also tipped as being a natural painkiller and many sufferers take supplements to ease their symptoms.
What to do if you think you have endometriosis
See your doctor. The only way to officially determine if you have endometriosis is through keyhole surgery, but your doctor will be able to assess how likely it is that this is what you're suffering from. They may well refer you to a gynaecologist, or if you have private medical insurance you could go directly to them for a consultation.
If you want to talk to someone about endometriosis you can call Endo NZ on 0800 733 277, or visit the site [here].