Endometriosis – the hidden epidemic

How to survive diagnosis and treatment and help the body to heal itself, by endometriosis expert Dian Shepperson Mills.

What causes endometriosis?
The endometrium – the inside lining of the womb – sheds as a menstrual period in the monthly cycle. From day one to day 14 of the menstrual cycle, it is building up ready for conception around day 15, when most women ovulate. This process occurs in response to the hormone oestrogen, creating a nutrient-rich layer inside the womb ready to receive an embryo. When conception doesn’t occur, a period will shed this lining. However, some of the blood may drip inside the abdomen via the fallopian tubes. Here it can begin ‘seeding’ itself onto healthy tissue on the bowel, bladder and ovaries. With each period, this tissue then bleeds along with the womb lining, and the fluid it creates can become trapped inside the abdominal cavity, generating inflammation and pain.

The reason why this happens is little understood. Research reports that as that many as half of all menstruating women are affected by period pain, and 10% have such severe pain that it incapacitates them for three or four days each month.[4] How many of these have endometriosis is unknown, as diagnosis requires invasive techniques to determine the presence of rogue endometrial tissue. Where it is investigated, endometriosis is commonly found on the outside of the womb, ovaries, ligaments, bladder and bowel; large blood filled cysts may form on ovaries; and adhesions can stick organs together. Rarely it can grow on other organs, such as the lung, gums, kidneys, diaphragm, stomach, and liver.

The four key symptoms of endometriosis
1. Chronic/acute period pains
2. Ovulation pain
3. Pain on intercourse
4. Sub-fertility

Other reported symptoms
5. Abdominal bloating, IBS
6. Bladder pressure, urgency, interstitial cystitis
7. Extreme fatigue
8. Ovary pains, lower back pains
9. Chronic bowel symptoms, rectal bleeding, IBS
10. Low body temperature
11. Recurrent hormone imbalances
12. Pains at all times
13. Low moods and anxiety
14. Reduced immunity with frequent infections and sore throats

What’s strange about endometriosis is that small specks of endometrial tissue can cause enormous pain, while huge lumps may give no pain at all.

Approaching your GP
Not all GPs are very knowledgable about endometriosis. So it really helps to take a list of the main symptoms with you to show him/her what happens to you each month. Explaining what the pain is like is also important. “It hurts here,” often isn’t sufficient. Try to describe the pain – ie pinching, stabbing, wringing, dragging, searing, deep aches, burning, tearing, twinges, backache, left ovary or right ovary pains.

Does this correspond to the time of your period or when you ovulate mid-cycle? Do your bowel habits change when you ovulate? Do you become constipated or have diarrhoea before, during or after your period? Explain it all, write it down and go through exactly what happens when and how many days the pain lasts. Score the pain on a 0-10 scale. Keep a diary. The doctor is more likely to take it seriously if you can show pain is happening with the period and at ovulation.

Some women even get pain every day. Tell your GP which painkillers you take and how many are needed to stop the pain, or do they not even touch the pain? Ask to be referred to a gynaecologist with specialist interest in endometriosis. Aim to be assertive but not aggressive. If taking the oral contraceptive pill and painkillers at periods does not stop period pain, then you must see a specialist. When you get a referral, tell the specialist all the same points. Having a scan may show cysts and identify if organs are misaligned – but it will not show small spots of endometrioisis, only large lumps. These can only be identified by laparoscopy. Getting a diagnosis is a great relief to know what is causing the pain.

Surgical treatment of endometriosis
Gold standard diagnosis is done by laser laparoscopy, where any endometrial tissue is identified and simultaneously...

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