1. Endometriosis is a chronic and often progressive condition, which occurs when tissue similar to the lining of the womb begins to grow on the ovaries, the lining of the pelvis, behind the uterus, over the top of the vagina and on the bladder and bowel. No one knows exactly why this happens, but the condition runs in families so there is almost certainly a genetic element. Some medics blame retrograde menstrual flow, where some of the tissue shed during the period flows through the fallopian tube into the pelvis. Endometriosis may also be an autoimmune disorder, or it could be caused by excess levels of oestrogen. Endometrial tissue has also been found in abdominal scars, so it may happen as a result of endometrial tissue being picked up and moved during surgery.
2. There is no way of preventing endometriosis, but the risk of developing it can be reduced by lowering the level of oestrogen in the body. Maintaining a normal weight and taking more than four hours of exercise a week decreases the level of circulating oestrogen. Alcohol increases oestrogen and so does caffeine. Research from the BioCycle study has shown that drinking more than one caffeinated drink a day, especially fizzy drinks and green tea, can raise oestrogen levels in premenopausal women (Schliep et al., 2012)
3. Endometriosis is thought to affect around two million women in the UK, but the true extent of the disease is hard to estimate because the condition manifests itself in a variety of ways, and it also shares symptoms with other conditions. For example, more then 60 percent of women who have endometriosis also have Irritable Bowel Syndrome (IBS) which can cause both constipation and chronic diarrhea. Most women with endometriosis first experience menstrual symptoms during adolescence, but the condition manifests most commonly in women who are in their 30s and 40s. On average, a woman with endometriosis will have experienced symptoms for 7.5 years before she gets a confirmed diagnosis.
4. Many women who are diagnosed with endometriosis worry about infertility. There is an established relationship between the two conditions, but it is far from clear-cut. Different studies have found the incidence to be as low as 5.5% (Fuldeore et al., 2010) and as high as 50% (Holoch and Lessey, 2010). At present, there is no cure and treatment is based on reducing symptoms by suppressing hormonal and ovarian functions with combined oral contraceptives. Surgical treatment (laparoscopy) can remove endometriotic tissue, but it is a specialized keyhole procedure which is not without risk. In the UK, 45 centers have been accredited by the British Society for Gynecological Endoscopy.
5. Pain during intercourse is one of the most common symptoms of endometriosis. In the World Endometriosis Research Foundation's 'EndoCost Quality of Life Study', half of the 931 female participants stated that endometriosis had a profound impact on their relationships; 56% reported painful intercourse (dyspareunia), and 60% of women reported chronic pelvic pain.
6. Women use terms like "sharp, stabbing, jabbing or a deep ache" to describe the pain, which can last for 24-48 hours after sex. It is the location rather than the size of the endometriosis lesions that typically determine the amount of pain a woman feels during sex. Endometriosis is likely to cause more pain if it is behind the vagina and the lower part of the uterus. When endometriosis occurs in this location it affects uterine nerves and sexual thrusting pushes and pulls the endometrial growths.
7. Experimenting with different positions can bring some relief. The missionary position tends to be more painful because the uterus is tilted at its most posterior aspect. Side to side, spooning and doggy style positions can be more comfortable because of the angle at which the penis enters. If deep penetration is painful, try sticking to shallow, slow or gentle sex.
8. The pain can be better or worse at certain times of the month so keeping a diary can help women to identify when symptoms are less intense. Many women experience the most severe pain mid-cycle during ovulation. Ovulation generally occurs between 12 and 14 days before a woman's period starts, so a woman who has a regular 28-day menstrual cycle would count the first day of her period as day one, and avoid sex between days 11 and 15 to minimize discomfort.
9.Women with endometriosis who have had a hysterectomy, or who are going through hormonal treatments, may experience pain due to vaginal dryness. Lubrication can help enormously, but women should avoid lubricants containing glycerin, parabens or warming agents because they can irritate the vaginal lining. Silicone based lubricants last longer than water based versions, but they tend to contain more chemicals. If you are not using condoms (oil erodes latex) you might want to try using natural oils such as apricot, or coconut, which smell fabulous and have a moisturizing effect.
10. Finally, women suffering with endometriosis need to understand the psychological impact of their condition. Once sex becomes associated with pain, the mere anticipation of post-coital discomfort can make a woman with endometriosis avoid sex and it is hard for their partners not to interpret this as rejection. It is very difficult for women to be honest about sexual pain because they want to be physically intimate and they often end up stuck in a double bind, where anxiety about sex and fear of pain aggravates their condition, but fear of rejection makes them engage in painful sex anyway. The couples that cope best in these difficult circumstances are the ones who keep their lines of communication open. There are all sorts of creative ways to have sex without penetration and couples who can learn to provide each other with painless pleasure during a flare up refuse to let endometriosis spoil their sex lives.