March is Endometriosis Awareness Month. This aims to raise public awareness of endometriosis, it’s symptoms, and the impact it has on women’s lives. It affects 1:10 women in the UK. While more people know about the condition today, there’s still a significant need for greater understanding and change, especially when it comes to diagnosis and treatment options.
WHAT IS ENDOMETRIOSIS?
In women who suffer from endometriosis, tissue similar to the womb lining (the endometrium) is found outside the uterus and in other parts of the body. The endometrial tissue normally lines the uterus and is what peels off and causes bleeding during menstruation.
The exact cause of endometriosis is still unknown. The most widespread theory is that during a period, the menstrual tissue passes backwards through the fallopian tubes and into the pelvis where it attaches and grows. This is called retrograde menstruation.
Endometriosis does seem to run in families, so you will be more likely to have it if your mother, aunt or sister has had it.
There are some theories that it could be caused by hormonal imbalance or immune system problems.
Many women have endometriosis with no symptoms or problems but this is not always the case. The main symptoms of endometriosis are abnormally heavy and painful periods, severe abdominal pain or cramping especially before and at the start of a period, extreme fatigue, bloating and pelvic/back pain, .This is because the scar tissue can cause the pelvic organs including uterus, bladder and bowel to get stuck together, which can result in pain on going to the toilet (for a number one and/or two), and also dreadful, deep pain during sex (dyspareunia). It is a reproductive disorder affecting 176 million women worldwide and is the leading cause of infertility and chronic pelvic pain.
All of these symptoms have other possible causes.
Some women who have difficulty becoming pregnant are found to have endometriosis, even when they don’t have other symptoms.
HOW IS ENDOMETRIOSIS DIAGNOSED?
Your GP might suspect endometriosis after a discussion about your symptoms and a physical examination. Early detection means that patients have a better chance at learning to manage their symptoms before having to resort to surgery. However, recent research published by Endometriosis UK shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis.
The pain of endometriosis is often put down to painful periods, irritable bowel syndrome, or simply that you cannot tolerate pain. But crippling pain should always be investigated, and a second opinion sought if your symptoms are initially dismissed. Women must be empowered to stand up for themselves and tell the doctor that something is not right.
If your doctor thinks you may have endometriosis they will most likely recommend you have an ultrasound scan. This will exclude other causes of your symptoms such as ovarian cysts or fibroids, but many cases of endometriosis are not visualised by ultrasound. A transvaginal ultrasound scan may be able to show if you have lumps (nodules) of suspected endometrium growing near or into your bowel and bladder. In more moderate stages of endometriosis, a scan might show endometriosis cysts (also called chocolate cysts because of the dark coloured blood which is contained inside them).
However, a normal ultrasound scan, blood tests and internal examination does not mean that you do not have endometriosis.
A definitive diagnosis can only be made if you have a laparoscopy (keyhole surgery) performed by a gynaecologist. A tiny incision is made in your abdomen and a small sample of tissue taken. Tests done on the tissue will confirm if it is endometrium or not. Based on the severity of your symptoms, your doctor will plan the best treatment for you.
ENDOMETRIOSIS AND FERTILITY
There are many reasons why a couple may be infertile. Endometriosis is sometimes found in women who are having trouble getting pregnant. In a minority of these women, scar tissue or adhesions caused by the endometriosis will have caused a blockage of the fallopian tubes. This can also lead to an increased risk of ectopic pregnancy, a condition where the pregnancy develops in the fallopian tube. However, in most women it is not clear why endometriosis affects their fertility. Theories include that the endometriosis results in eggs that are less likely to fertilise and that it may produce natural toxins to sperm.
ENDOMETRIOSIS AND PREGNANCY
The painful periods and heavy menstrual bleeding that are often characteristic of endometriosis may resolve temporarily in pregnancy, and there may well be some other relief as well. Some women benefit by the increased levels of progesterone during pregnancy. It’s thought that this hormone suppresses and perhaps even shrinks endometrial deposits.
However, some women find that their symptoms worsen during pregnancy. This is due to the growing uterus, which as it increases in size to accommodate the growing baby, it can pull and stretch scar tissue, causing pain and discomfort. An increase in oestrogen can also make endometrial deposits grow.
Experiences of other pregnant women with endometriosis may therefore vary during pregnancy, and how you feel will depend upon the severity of your condition, your body’s hormones, and the way your body responds to pregnancy.
Even if your symptoms do improve during pregnancy, unfortunately they will resume after the birth of your baby. Breastfeeding can delay the onset of symptoms, but once your period returns, your symptoms are likely to reoccur.
WHERE ELSE CAN I GO FOR ADVICE AND SUPPORT?
Endometriosis UK provides vital support services, reliable information and a community for those affected by endometriosis. You can look through the website or call the helpline on 0808 808 2227.