Endometriosis and Pelvic Pain

Endometriosis is a condition in which the tissues that normally line the inside of the womb (endometrium) get deposited and start to grow outside of the womb lining. This tissue can grow in virtually any part of the body but is most commonly found on the inner wall of the abdomen and pelvis, the outside of the womb and its supporting ligaments, the ovaries, the fallopian tubes, and the intestines. Sometimes, the tissue grows into the muscle of the womb to cause a condition known as adenomyosis. Nobody knows for sure how many women are affected by endometriosis but we estimate about 1 in 10 women are and the typical features are found in 1 in 4 women operated on in hospital. Endometriosis appears to run in families so women are more likely to be affected if other close family members have had the condition.

What causes endometriosis?

Endometriosis is not a disease as such and nobody knows exactly how it starts. It is widely believed that the tissue that is shed from the lining of the womb during a menstrual period passes through the fallopian tubes to the outside of the womb, from where it spreads to affect other tissues. Ovarian hormones produced during the menstrual cycle stimulate these tissues just as they do the lining of the womb, making them grow and bleed. This bleeding outside the womb lining into the abdomen and pelvis is responsible for the pain of endometriosis as well as the inflammation that leads to formation of adhesions. Although we do not yet fully understand what causes endometriosis, we are experts in helping women achieve relief from its devastating consequences of pelvic pain and infertility.

What problems does endometriosis cause?

Endometriosis may not cause any problems and may only be found by chance during an operation for some other condition. It usually impacts very negatively on women’s family life and productivity.

Pain – typically, endometriosis causes pain that is notoriously most severe around the time menstruation, sometimes leading to a total disruption of lifestyle. The pain often begins before the period starts, continues throughout the duration of bleeding, and may persist for a few days after the bleeding has stopped. Endometriosis can cause painful sexual intercourse especially on deep penetration that is sometimes severe enough to render sex impossible.

Cysts – the condition can also lead to formation of cysts in the ovaries (endometrioma) and other parts of the body causing pain that is present all the time because of pressure on those. Endometriotic cysts of the ovaries could grow very large with the rare risk of bursting, leading to severe pain and an acute emergency.

Nodules – endometriosis can progress to a severe form where the vagina, rectum, bladder and ureters may become involved. This is called rectovaginal endometriosis and causes profound menstrual and pelvic pain symptoms that could result in complete disruption of normal routines and sex life.

Adhesions – endometriosis causes inflammation of the womb, fallopian tubes and lining of the pelvis, leading to formation of adhesions. These adhesions may cause blockage of the fallopian tubes resulting in infertility.

Infertility – women with endometriosis have a lower chance of conceiving both naturally and by IVF even when the fallopian tubes are not affected.

Bleeding – spotting of blood for a few days before the period starts properly often is associated with endometriosis.

How is it detected?

The presence of endometriosis is often suspected because of the nature of the pain that it causes. Some women may have spotting of blood for a few days before their periods actually start. It may be possible to see an endometriotic deposit (nodule) in the vaginal wall of women with rectovaginal disease. It is usually possible to see ovarian endometriotic cysts on an ultrasound scan. Endometriosis is confirmed by seeing the typical deposits in the pelvis during an open or laparoscopy (keyhole) surgery. We provide the full spectrum of diagnostic and treatment tools for endometriosis at all stages. We very clearly favour early diagnosis of the condition to avail the opportunity to control the symptoms from the early stages and to hopefully prevent the problems of long-standing and/or severe disease.

How we treat endometriosis

We offer conservative, medical and surgical options of treatment for endometriosis. This includes provision of the full range of surgical options from laparoscopic ultraconservative procedures for mild disease to radical excision of severe and rectovaginal disease. Although the predominant feature of endometriosis is pelvic pain many other conditions also give rise to pelvic pain (see below). This is why we adopt a methodical approach to the investigation and treatment of pelvic pain syndromes with provision of counselling and chronic pain physiotherapy to clients who need them.

We offer the full scope of interventions for these conditions:

Medical treatment

Very mild cases may require no treatment at all. Strong painkillers are usually helpful in controlling the pain of endometriosis. The oral contraceptive pill is useful in some women because it suppress ovulation and so reduces blood levels of the hormones that stimulate deposits of endometriosis. The pill usually needs to be used for prolonged periods and some women may find its side effects disturbing. Other medicines that prevent the ovaries from producing hormones that stimulate the lining of the womb have proved to be very effective remedies. These are available as monthly or three-monthly injections and can be used for prolonged periods in combination with mild hormone replacement preparations. All of these medicines do not eradicate endometriosis so it can unfortunately flare up again after they are stopped.

Surgical treatment

Surgery is used to cut away or burn off deposits of endometriosis and this provides the only real chance of eradicating the condition. Surgery is also useful for dividing adhesions and unblocking the fallopian tubes to restore fertility. Surgery provides the only treatment option for women with nodular and severe endometriosis of the rectovaginal septum. In the absence of adhesions or blockage of the tubes (obvious things that compromise fertility) the treatment of endometriosis in women who are actively trying to conceive raises a dilemma. This is because most of the medicines that are used for treatment of endometriosis either prevent or are not appropriate for use during pregnancy. We guide women in deciding what best to do depending on the severity of their condition and urgency of the desire for pregnancy. Pregnancy is known to offer some relief from the pains of endometriosis because it stops the bleeding into the abdomen and pelvis from the deposits. Some women may thus choose to try for a pregnancy first before having treatment for the condition.

Ancillary treatment

Women with endometriosis could be helped by ancillary treatment such as alternative therapies (including acupuncture) and counselling. When we exhaust medical and surgical treatment options, there is still scope for treatment with chronic pain management.

Recurrence of endometriosis

Irrespective of how successfully endometriosis is treated, there unfortunately remains a small chance that it might recur (return). The risk of recurrence averages about 1-in-4 women after 5 years. The risk appears to be greater with more extensive endometriotic deposits and surgical excision carries the smallest risk of recurrence. Despite this, monitoring women after surgical treatment of endometriosis has not beem shown to be necessary.

Pelvic Pain

Pelvic pain is one of the most common reasons why women are seen in hospital during reproductive life (15-45 years). Pelvic pain may occur at any time (sporadic) or at particular phases of the menstrual cycle (cyclical). Irrespective of when or why it occurs it can lead to severe disruption of personal and family life and warrant investigation and treatment. As mentioned above, endometriosis accounts for a large proportion of pelvic pain in women within the reproductive years.

Causes of pelvic pain

Pelvic pain can be caused by a variety of conditions but sometimes the cause is not obvious even after full investigation. Common causes of pelvic pain include:

Pelvic infection: this can cause pelvic pain at any time and the onset is normally very quick. Women can become very ill quickly with accompanying fever, vomiting and a vaginal discharge.

Endometriosis: see above.

Uterine fibroids: these are benign (not cancerous) swellings of the womb that can give rise to pain and heavy periods.

Ovarian cysts: these are cystic swellings of the ovaries that normally do not cause pain but that can sometimes undergo accidents which give rise to sudden pain (like torsion or bleeding).

Cancer: cancer of the ovaries, womb and cervix can give rise to pelvic pain of varying degrees during their course.

Non-gynaecological causes: sometimes the cause of pelvic pain is not gynaecological including bladder infection or stones, appendicitis, bowel dysfunction and inflammatory bowel disease.

What problems can it lead to?

Pelvic pain can be debilitating with disruption of personal and family life. It can contribute to several days of lost productivity from work absences. The impact on the sufferers’ quality of life can be profound. If not investigated and treated promptly, any underlying pathology can progress to more severe stages when treatment might be difficult or impossible.

How is it investigated?

The key to understanding the nature of pelvic pain is a good history; it is very helpful if affected women can give a detailed history of their symptoms. We will then undertake a full physical examination that includes examination of the abdomen and pelvis. Vaginal and cervical swabs will be taken during the examination to check for infections. A pelvic ultrasound scan is a very useful investigation that can detect the presence of swellings and cysts of the pelvic organs. Sometimes, all of these might not reveal the cause of the pain and it might be necessary to undertake a laparoscopy to inspect the abdomen and pelvis.

Treatment of pelvic pain

The treatment of pelvic pain is essentially the treatment of the underlying condition although other general measures are sometimes used in attempts to control the pain.

General measures: these generally aim to control pain, thereby reducing suffering and improving quality of life. Many painkillers help especially anti-inflammatory drugs. Women with cyclical menstrual pain often benefit from having fewer periods and this can be achieved with hormone preparations (like the pill). It might be useful to stop periods completely for some time and this is achieved with monthly or three-monthly hormone injections. Women often enquire about complimentary therapies such as acupuncture; we advise that these can be used alongside the traditional measures.

Specific treatment: this is essentially treatment of the underlying cause. Pelvic inflammatory disease is treated successfully with antibiotics but surgery might occasionally be necessary to deal with more severe cases. See above for endometriosis treatment. Fibroids can be treated by surgical removal (myomectomy) or hysterectomy (for older women) or by blockage of the blood supply to the fibroids (uterine artery embolisation).

Long-term outlook

Most forms of pelvic pain are treated successfully by the measures outlined above. However, a small number of sufferers with chronic pelvic pain might unfortunately not be helped by these (even after pelvic clearance). These situations are very difficult to manage and sufferers are ultimately referred to the care of chronic pain specialists.

Useful contacts:

The National Endometriosis Society
50 Westminster Palace Gardens, 1-7 Artillery Row, London, SW1P 1RL
Tel. 0207 222 2776; www.endo.org.uk

World Endometriosis Society