I must admit I was taken aback when my patient made this statement. It was over 15 years ago, but I remember it clearly. Initially I thought this was quite an extreme reaction but over the years, it has influenced my attitude and management of women suffering from endometriosis.
Endometriosis is usually a lifelong painful condition and my patient explained to me how she felt. She explained that with cancer, one has the sympathy of family and work colleagues. She felt isolated and unsupported as there were no external signs to account for her pain which often lasted for the best part of the month. She received little acknowledgment or sympathy, even after being diagnosed with severe endometriosis, as there was so little awareness about the nature of her condition.
Endometriosis can affect women from teenage years through to the menopause and can be debilitating for many women. Tissue similar to the endometrial lining of the uterus ( which sheds as your period every month) finds its way into the pelvis through a number of mechanisms, sticking itself to the back of the uterus and ovaries, which are the commonest sites. This in turn can result in ovarian cysts (often called chocolate cysts because of the dark blood as a result of bleeding into the ovary), adhesions and scarring. Women often suffer from painful, heavy periods, soreness for days after sexual intercourse and pelvic pain long before the period starts.
Difficulty in falling pregnant is a very real problem for women with endometriosis. Compared to the one in 20 women in the general population, as many as one in five women with chronic pelvic pain or infertility suffer from endometriosis.
Endometriosis is often called a disease of the modern age, as child bearing occurs at a later stage in women's lives nowadays and women opting for smaller families. Instead of spending most of our reproductive lives either pregnant or lactating as our previous generations did, we now have as many as 400-500 periods until we reach menopause. While it means that maternal mortality is not as high as before - there are more menstrual related problems such as endometriosis, fibroids, PCOS, lost days of work from painful and heavy periods.
As a laparoscopic (keyhole) surgeon and consultant gynaecologist with over thirty years of medical experience, I have seen, diagnosed and successfully treated many patients with endometriosis. There is no known cure for endometriosis but early diagnosis is key so appropriate treatment of symptoms can be offered..
What advice would I give young women of today?
Be aware of your own body and note any changes. You need to seek medical advice, if over the counter painkillers such Feminax and Neurofen do not settle your period pains or your day to day life is being affected by pelvic pain.
Keep a pain and menstrual calendar so when you meet your doctor, you have all the information ready.
Periods may make endometriosis symptoms worse. If you are not trying for a pregnancy, consider effective hormonal contraception such as the Pill, Mirena coil or implant that keeps your periods at a minimum. If taking the Pill, be aware you can take it back to back without a break. There is no medical reason to have a bleed whilst on the Pill. Your symptoms will usually improve on the Pill, unless there are large chocolate endometriotic cysts that need keyhole surgery (laparoscopy).
If there is a family history of endometriosis, you are at a higher risk of having the condition. If your symptoms tie in with endometriosis, speak to your doctor about your concerns. Sometimes, irritable bowel syndrome or pelvic inflammatory disease can cause confusion with diagnosis. An ultrasound scan and blood tests can be helpful in some cases. However, one can have a lot of pain with just a few spots of endometriosis that will not be seen on a pelvic scan.
The most definitive way of diagnosing the condition is by doing a laparoscopy, as biopsies can be taken. Ovarian cysts and scar tissue can be dealt with at the same time to help relieve pain and improve fertility chances.
In my experience, reducing dairy intake and a diet rich in vegetables, fruits, beans and whole grains tends to improve symptoms. Acupuncture, breathing techniques, yoga and regular exercise can all help with pain management.
As a gynaecologist, I firmly believe if women have access to the right information, they are in a better position to make informed choices regarding their health. Campaigns such as the Endometriosis Awareness Week are excellent ways of improving awareness. Further information and support is also available from the National Endometriosis Society.