What it is
Endometriosis is the presence, outside the uterus, of tissue similar to the one that lines it — on the ovaries, the ligaments of the pelvis, the wall of the rectum or the bladder, more rarely elsewhere. This tissue reacts to the hormones of the cycle like the uterine lining: it bleeds, it becomes inflamed, it creates adhesions that stick organs together. The disease affects about one woman in ten of reproductive age, close to two hundred million people worldwide, and it often begins in adolescence. Its exact cause is unknown; what is known is that it is chronic, that it cannot be cured in the strict sense, that it can be treated well in most cases, and that it generally dies down at menopause. It is not a cancer and does not become one.
The signs that should bring it to mind
- Very painful periods, which keep you from school or work, which ordinary painkillers do not relieve, and which worsen over the years. It is the most frequent and the most trivialised sign: pain during periods is common, being pinned to the bed is not. The page on the menstrual cycle describes the limit of normal.
- Deep pain during sex, at the far end of the vagina, in certain positions, sometimes lasting hours afterwards.
- Pain when passing stools or urinating during periods, bloating, sometimes blood.
- Chronic pelvic pain, outside periods, and unexplained tiredness.
- Difficulty conceiving: endometriosis is found in a large share of women who consult for infertility, and a third to a half of affected women meet difficulties — which also means that the majority conceive.
None of these signs is specific, and the intensity of the pain says nothing about the extent of the lesions: small lesions can hurt a lot, large ones can go unnoticed. That is one of the reasons for the diagnostic delay — seven to ten years on average between the first symptoms and a name being put on them, in most countries where it has been measured. The other reason is cultural: generations of women were told that period pain was normal.
How it is diagnosed today
Diagnosis has changed. It rests on the history — the precise calendar of the pain, its link with periods, sex, bowel movements —, the gynaecological examination, and imaging: a transvaginal ultrasound done by a practitioner trained to look for it, and a pelvic MRI for the deep forms. Laparoscopy, long the obligatory step, no longer is: international guidelines allow the diagnosis to be made and treatment started without operating, surgery being reserved for cases where it is therapeutic. There are three forms, which combine: superficial on the peritoneum, ovarian cysts — endometriomas —, and deep, which infiltrates neighbouring organs. A sister disease, adenomyosis, where the same tissue grows within the muscle of the uterus, gives heavy and painful periods and often accompanies endometriosis.
The treatments
- Against pain: anti-inflammatories taken early, from the start of the period, and not once the pain has set in; then, if that is not enough, chronic pain management — suitable painkillers, pelvic physiotherapy, pain-management techniques, sometimes a specialist centre.
- Hormonal: the principle is to block periods so as to rest the lesions. A combined pill taken continuously, progestogens alone as a tablet, implant or hormonal IUD, and, for resistant forms, treatments that put the ovaries fully at rest with hormonal add-back to limit their effects. They relieve the majority of women; they do not remove the lesions and symptoms return when they are stopped. They are also contraceptives, which matters when a child is wanted.
- Surgical: laparoscopy to remove lesions and adhesions, indicated when medical treatment fails, when a cyst is large, when an organ is threatened, or in certain infertility situations. It relieves, but recurrences are frequent — one woman in four to five within five years — and repeated operations damage the ovaries. Removing the uterus is not a treatment for endometriosis and does not cure it.
- For fertility: depending on age, the form of the disease and how long you have been trying, surgery or going straight to assisted reproduction, in vitro fertilisation giving good results in this indication. The page on assisted reproduction describes the pathways, and the country sheets their conditions.
Care, reimbursement, the existence of specialist centres and recognition of the disease as a long-term condition vary a great deal from one country to another; that is a point to check with the patient associations of your country, which are often the best informed.
Sex, and the couple
Pain during sex is the symptom least talked about and the one that weighs most on the couple: it installs avoidance, avoidance installs distance, and the partner ends up feeling guilty about a body she did not choose. A few markers. Deep pain often depends on position and depth: those where the woman controls the movement, or shallower positions, change a lot. It depends on the time of the cycle: the days before the period are the worst, and knowing this allows choosing. It does not require penetration: sex without penetration during painful periods is not a renunciation, it is an adaptation, and many couples discover on this occasion what the page on desire and pleasure describes. And it can be treated: a hormonal treatment that calms the lesions also calms sex; a pelvic-floor physiotherapist relaxes muscles which, from anticipating pain, tighten before any contact. What not to do: grit your teeth. Pain endured in silence maintains the contraction reflex and teaches the body to dread sex.
For the partner, the role is simple to state and hard to hold: believe the pain — it is neither exaggerated nor “in the head” —, do not take it as a rejection of oneself, and come along to appointments, because a chronic illness is better carried by two.
When to seek help
As soon as periods prevent a normal life, as soon as sex hurts deep inside, as soon as a pregnancy is slow in coming beyond a year — six months after thirty-five — with painful periods. The family doctor or midwife first, the gynaecologist next, and preferably a practitioner or a centre used to endometriosis, because the ultrasound only sees it if one looks for it. The page who to see, and when details the referral.
Recognition and care by country
Chronic-disease status, national plans, specialist centres, menstrual leave: what each country provides is summarised in the country table on the menstrual cycle page, with a full page for the countries where there is enough to say.
Frequently asked questions
Does pregnancy cure endometriosis?
No. Pregnancy suspends periods and therefore, often, the symptoms, which return afterwards. “Have a baby, it will pass” is advice still heard and without foundation.
Does the pill hide the disease?
It calms it, and that is precisely why it is prescribed. Many women discover endometriosis on stopping a contraceptive taken since adolescence, when the pain returns: the pill did not create the disease, it was holding it back.
Is it hereditary?
The risk is several times higher when the mother or a sister is affected, which justifies not letting very painful periods drag on in a teenager whose family knows the disease. But there is no endometriosis gene, and most affected women have no known family history.
Do diet, exercise or osteopathy help?
Regular physical activity reduces chronic pain in general, and some women notice an improvement when changing their diet; none of these approaches has proved any effect on the lesions themselves. They can complement a treatment, not replace it.