As it’s Endometriosis Awareness Week we asked Dr Josephine Fagan to give us the lowdown on a condition that affects an estimated two million women in the UK, though many aren’t even aware that they have it.
What is endometriosis?
A condition where tissue that behaves like the lining of the uterus or womb (the so-called endometrium) is found outside the uterus; most commonly on the ovaries, the pelvic lining behind the uterus and covering the top of the vagina.
These endometriosis cells behave like those that line the uterus, so every month they grow during the menstrual cycle and bleed. This blood from the endometriosis cells then becomes trapped as it has no way of escaping the body.
What are the symptoms of endometriosis?
It may cause:
• painful periods (worse and more prolonged than usual)
• bleeding between periods
• painful sex
• abdominal, pelvic and lower pain
• reduced fertility
• pain on passing motions or urine
• less commonly it may also cause other health problems, such as pains in various parts of the body
What causes endometriosis?
This is currently unclear. It may be that endometrial cells spill out of the fallopian tubes during menstruation. Experts agree that genetic, hormonal and other factors may also play a part. Patches of endometrium outside the womb can cause adhesions with other organs, which can cause the uterus to ‘stick’ to the bowel or bladder.
Larger clumps of endometrium may form cysts, which bleed during menstruation (when full of dark blood these are known as ‘chocolate cysts’). Generally the larger these clumps of endometrium are then the worse the symptoms will be, though this isn’t always the case.
Who develops endometriosis?
Potentially any woman at any age can develop endometriosis but most are diagnosed between the ages of 25 and 40. The condition tends to run in families and the risk of developing it is reduced by taking combined oral contraceptives (what most of us call ‘the pill’). Endometriosis is rare in post-menopausal women because they have low oestrogen levels.
How is endometriosis diagnosed?
Many of the symptoms of endometriosis can be caused by other conditions. However, if symptoms persist a diagnostic laparoscopy is usually undertaken, which involves inserting a laparoscope (an instrument like a small telescope) into the abdomen while the patient is under anaesthetic. If the gynaecologist sees patches of endometriosis the diagnosis is confirmed. Other potentially useful diagnostic tests are currently in development.
What are the possible complications?
If left untreated, four out of 10 women will experience worsening symptoms but three out of 10 will get better. The remainder will have no change in their symptoms. Severe complications in untreated endometriosis can include bowel obstruction or blockage of the tubes from the kidneys.
What are the treatments for endometriosis?
As there is no curative treatment the focus is on symptom control. Painkillers such as paracetamol and codeine are helpful, as are anti-inflammatories such as ibuprofen.
Hormone treatments have similar success rates for improving pain but they do not improve fertility. These include:
• The combined oral contraceptive pill (‘the pill’). Strictly speaking this is not a licensed treatment for endometriosis but many women have lighter, less painful periods when using it. Pelvic pain and pain during intercourse may also improve.
• The intrauterine system (IUS), which is a small plastic device containing a progesterone hormone that makes the uterus lining thinner and may affect ovulation. These features reduce endometriosis pain and bleeding – many women who use the device have no periods. The IUS is also a popular form of contraception; once inserted by your doctor it can remain effective for up to five years.
• The progestogen-only pill (‘mini pill’) causes endometrial cells to shrink and prevents ovulation. Side effects include irregular periods, weight gain, mood changes and bloating.
• GnRH (or gonadotrophin releasing hormone) analogues block the production of gonadotrophins, which are made in the brain and influence oestrogen production. Some preparations are given as a nasal spray, others by injection. A six-month course is usual. They may stop periods but side-effects can include hot flushes, vaginal dryness, reduced sex drive and sleep problems. Small doses of HRT have been used in combination with GnRH analogues to reduce side effects.
• Danazol, which reduces the production of gonatotrophins and hence oestrogen levels. Danazol usually stops periods but side-effects include acne, mood changes, hair growth, weight gain and, more rarely, an irreversible deepening of the voice.
It’s important to note that condoms should be used if having intercourse while taking non-contraceptive treatments for endometriosis because they may affect a developing baby.
Keyhole surgery can remove larger patches of endometriosis but larger cysts may require an operation. If other treatments have failed and the patient’s family is complete (or they do not want children) a hysterectomy (removal of the uterus) and removal of the ovaries may be suggested.
Endometriosis and pregnancy
The longer a woman has endometriosis the more her fertility will be affected, which may influence decisions about family planning. Surgical treatment can improve the chances of conceiving and having endometriosis does not put pregnancies at risk. Pregnancy can also reduce the symptoms of endometriosis but they may recur afterwards.
What’s the take home message?
• Treatment depends on symptoms and the condition may settle down by itself.
• After successful treatment, symptoms may recur.
• But remember, endometriosis is not a cancerous condition.
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Josephine works as a doctor in urgent and primary care. She’s also a bit of a globetrotter, is working on her first novel, and loves the colour purple.