WITH studies showing it can take eight years to get a diagnosis of endometriosis, sadly many women are suffering from a condition which although common, seems to be less well understood, perhaps by doctors and patients alike.

The Lancashire Telegraph's guest GP, Zak Uddin highlights the symptoms of endometriosis in his most recent column.

Endometrium is the medical term for the lining of the womb, or uterus. When periods commence, it undergoes cyclical changes under hormonal control, including growth (proliferation) in readiness for a fertilised egg to implant. If this does not happen, this lining sheds, signified by vaginal bleeding, also known as menstruation.

Endometriosis, conservatively affecting 1 in 10 women, is the presence of endometrial tissue outside of its normal setting, i.e. the womb. It can occur anywhere in the abdominal and pelvic cavity, including its lining (peritoneum), the fallopian tubes, ovaries, and on the surface of the bowel and bladder. Rarely it may migrate up into the chest, a condition called intrathoracic endometriosis.

Like the tissue in the womb, it too is under hormonal control, hence it grows and bleeds with every menstrual cycle. However, unlike blood in the uterus which can exit through the vagina, blood elsewhere cannot escape.  It causes irritation, inflammation and swelling of the tissues it comes into contact with, often causing excruciating pain. In addition, scar tissue formation, known as adhesions, twists and distorts the normal anatomy.

It isn’t exactly clear what causes endometriosis. It does run in families, so if you have a first degree female relative with the condition, your chances of suffering are higher. One theory is that of “retrograde menstruation”, so rather than endometrial tissue leaving the womb through the vagina during a period, it travels back up through the fallopian tubes and out into the pelvis and abdomen, seeding itself on various organs.

One of the reasons for delay in diagnosis, as mentioned earlier is that the main symptoms are painful and heavy periods.  As well as some doctors, many women are not aware of what is a normal amount of pain to expect with menstruation. The discussion of such matters is still unfortunately taboo among large aspects of society. 

Other symptoms include pain during and after intercourse. If the bowel or bladder are involved, there can be pain on opening the bowels or passing urine, and rarely blood in the faeces and urine.

Infertility is thought to be due to either inflammation damaging the egg and sperm themselves, or interfering with movement of egg and sperm in the female reproductive system. In severe cases fallopian tubes may be completely blocked.

As well as heavy periods, endometriosis may be incorrectly diagnosed as Irritable Bowel Syndrome (IBS), urinary tract infections and back pain. Though obviously not a psychiatric condition, the distress of repeated presentations often to different healthcare providers, failed trials of treatment and living with chronic pain can bring on mental health conditions including anxiety and depression.

Again, one of the difficulties in diagnosis is that there isn’t a non-invasive test that can confidently pinpoint the condition. Abdominal and trans-vaginal ultrasound are often used, although the most common type of endometriosis, peritoneal, may not be apparent on ultrasound scanning. MRI is second line imaging, particularly if there is the suggestion of advanced disease.

The gold standard is diagnostic laparoscopy, where a small incision is made in the abdomen and a slender camera is inserted into a cavity distended by gas, so the organs can be directly visualised, as well as the extent of disease.

However, an astute clinician, taking a thorough history, and mindful of endometriosis as a potential diagnosis, could commence a trial of treatment, at least the initial steps, before resorting to the above surgical procedure.

Treatment is dependent on symptoms and where the woman is terms of her desire for, or completion of a family. Strong analgesia may be required, some women having pain only just before and during their periods, while others will suffer continuous symptoms.

Hormonal treatments include both combined and progesterone only contraceptives, which will make periods lighter and less painful. In some cases, women using the Mirena Intrauterine System may not have periods at all. Although these can be used long term, and commenced comfortably without a diagnostic laparoscopy, they are obviously unsuitable for women wishing to conceive.

Hormonal methods that do not interfere with conception include danazol and gonadotrophin-releasing hormone (GnRH) agonists. These would mostly be started by specialists.

Surgery to strip away endometrial deposits may be used with the aim of improving fertility, though it does not work in every case. As a final resort, those who do not wish for, or who have completed their family, may be offered surgery to remove of the womb, fallopian tubes and ovaries.

I would urge any woman with symptoms not to be shy in raising the possibility of this diagnosis in consultation with their regular GP.