Endometriosis
In endometriosis, tissue resembling the lining of the womb turns up where it has no business being: on the peritoneum, on the ovaries, on the ligaments and…
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Medicines commonly prescribed for Endometriosis
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: ORAL SOLUTION/SUSPENSION, 100 mg / 5 mlActive substance: ibuprofenManufacturer: Laboratorio Aldo Union S.L.Prescription requiredDosage form: TABLET, 400 mgActive substance: ibuprofenManufacturer: Aurovitas Spain, S.A.U.Prescription not requiredDosage form: TABLET, 400 mgActive substance: ibuprofenManufacturer: Zambon S.A.U.Prescription not required
In endometriosis, tissue resembling the lining of the womb turns up where it has no business being: on the peritoneum, on the ovaries, on the ligaments and sometimes on the bowel, the ureter or the diaphragm. Every cycle those patches answer the hormones exactly as the womb lining does, swelling and bleeding, but the blood has nowhere to go. The result is inflammation, adhesions and a pain that over the years stops matching the period calendar. The condition is not rare: roughly one woman in ten of reproductive age lives with it, and for most of them the road to a diagnosis is still measured in years.
What happens inside
The exact cause is still unknown. The theories under discussion include menstrual blood flowing back through the tubes into the abdomen, an immune response that fails to clear those cells away, and an inherited tendency, since sisters and daughters of a patient carry a higher risk. Neither diet, nor temperament, nor "nerves" bring the condition on, and no patient is to blame for having it.
Three things about the patches themselves are worth understanding.
- Size and pain are only loosely related. A few tiny patches on the peritoneum can hurt more than a large cyst, so "the scan shows almost nothing" does not translate into "it should not be hurting".
- Long-standing pain eventually changes how the nervous system works: it becomes more sensitive, and the pain stops being a straightforward signal of damage. That is why treatment is aimed at the patches and at the pain itself.
- The patches live on oestrogen. Almost all drug treatment is built on that fact, removing the cyclical swings in hormones and so settling the tissue down.
What it feels like
The most recognisable complaint is period pain, though not the sort that a tablet settles and that lets you carry on as usual, but the sort that puts you to bed, makes you miss work or lectures and leaves you nauseated and pale. Alongside it there is usually something else:
- pain low in the abdomen and in the lower back between periods, sometimes constant;
- deep pain during or after sex that lingers for hours;
- pain on opening the bowels and on passing urine, particularly during a period, occasionally with some blood;
- heavy periods with clots, needing a pad or tampon changed every one or two hours;
- bloating with alternating constipation and diarrhoea, taken for irritable bowel syndrome for years;
- exhausting tiredness that rest does not fix;
- difficulty becoming pregnant;
- rarely, chest pain, breathlessness or coughing up blood tied to the days of a period.
Symptoms start within the first years of menstruating and need not all appear together. It is not only women who are affected: it concerns anyone with a womb and a menstrual cycle, transgender men included.
Why the diagnosis takes years
The delay has three causes, and every one of them can be shortened.
The first is the habit of treating severe pain as normal. "Everyone gets it" and "put up with it, it will go once you have a baby" have cost many women ten years of living in pain. Normal is discomfort you can work and sleep through. Anything that forces you to cancel plans every month is not.
The second is the disguise of a bowel or bladder complaint. If the bloating, the abdominal pain and the urinary urgency get worse strictly before a period and in the first days of it, say so plainly: that link with the cycle is the key.
The third is the belief that a clear scan rules the diagnosis out. It does not, as explained below.
See a doctor if period pain knocks you out of your own life, if sex or going to the toilet hurts, if you have been trying to conceive for more than a year, or if the treatment you were given is not working. It helps a great deal to keep a short diary for two or three weeks: day of the cycle, where it hurts, a score out of ten, what you took and whether it helped. With that sheet of paper the appointment goes quite differently.
What the tests show
Talking and examining remain the mainstay: the doctor asks about the cycle, about the pain and how it tracks the days, about the bowel, the bladder and sex, and about the condition in a mother or a sister. A pelvic examination picks up tenderness and thickening deep in the pelvis, but it is done with your consent and can be postponed if it feels unbearable right now.
- Transvaginal ultrasound shows endometriotic cysts of the ovary well and, in experienced hands, the deep patches behind the womb, on the bowel and on the bladder too.
- MRI of the pelvis is brought in where deep endometriosis is suspected and before an operation is planned.
- Laparoscopy means looking inside the abdomen through small cuts, with the option of removing the patches during the same procedure and taking a biopsy. It used to be treated as compulsory for a diagnosis; that is no longer the case.
A normal ultrasound or MRI does not rule endometriosis out. Superficial patches on the peritoneum show up on no machine at all, and that is the commonest reason a woman is sent home empty-handed for years on end. When the picture is typical, treatment begins without waiting for proof on a picture. Nor is there yet a blood test that confirms the diagnosis.
What helps
Endometriosis cannot be cured outright today, but the symptoms can be brought under control in most people. The plan is chosen around whatever gets in the way most and around your plans for a pregnancy.
- Pain relief. Anti-inflammatory drugs work better when started a day before the pain is due rather than once it has become unbearable. They are combined with paracetamol. Which drug suits you and whether you may take it at all is a conversation for a doctor or pharmacist, especially with stomach or kidney problems or asthma.
- Hormonal treatment. The aim is to remove the cyclical swings. The options are the combined contraceptive pill, including taken continuously without the bleeding break; progestogens as tablets, an injection or an implant; and the hormonal intrauterine system, which also cuts blood loss sharply. In severe cases analogues of gonadotrophin-releasing hormone put the body into a temporary menopause and are prescribed together with add-back therapy to protect the bones. All of this treats pain, does not restore fertility and cannot be combined with trying to conceive.
- Surgery. Laparoscopic removal of the patches and of endometriotic cysts relieves pain for many, but the patches can return and repeated operations on an ovary reduce the store of eggs. Deep endometriosis involving the bowel or the ureter is operated on only in a specialist centre with a colorectal surgeon and a urologist on hand.
- Removing the womb is the last resort. It does not clear the patches lying outside the womb, and in some women the pain carries on afterwards. Agreeing to it as "the answer to the problem" is unwise.
- Working on the pain beyond drugs. Physiotherapy and pelvic floor exercises, heat, physical activity within your limits, help from a chronic pain service and psychological support. This is not "instead of treatment" but its other half, above all when the pain has lasted years.
Endometriosis and pregnancy
Reduced fertility with endometriosis is not a verdict: pregnancies happen without treatment, after surgery and with assisted reproduction. Two myths, though, deserve saying out loud. Pregnancy does not cure endometriosis: symptoms usually quieten while there are no periods and come back afterwards. And "have a baby and it will go away" is not a medical recommendation.
If pregnancy has not happened within a year, or within six months past thirty-five, both partners are assessed. What follows depends on age, on the state of the tubes and on whether other causes exist. Women with endometriosis who are postponing motherhood do well to discuss their ovarian reserve with a doctor early, particularly before any operation on an ovary.
Signs that cannot wait
Endometriosis rarely becomes an emergency, but it happens. Call an ambulance (in Europe the single number is 112) or go straight to hospital if there is:
- sudden severe abdominal pain with sickness, vomiting or fainting, which is how a ruptured cyst and a twisted ovary present;
- bloating with no wind or stool passing and repeated vomiting, the signs of bowel obstruction;
- bleeding that soaks a pad in under an hour for several hours running, with dizziness and a racing heart;
- a fever with lower abdominal pain and offensive discharge;
- sudden chest pain and breathlessness coinciding with a period.
One thing deserves separate mention precisely because it causes no pain and is therefore more dangerous: deep endometriosis can compress a ureter, and the kidney then loses function slowly without announcing anything. That is why, once deep endometriosis is confirmed, the doctor checks the kidneys with an ultrasound scan at least once even when nothing is troubling you. And one more point: new or altered symptoms after the menopause, as well as an ovarian cyst that is growing quickly, always call for a fresh assessment rather than the usual watching and waiting.
Online consultation
A remote appointment earns its place exactly in the run-up to a diagnosis and in the long follow-up afterwards. The doctor will go through the pattern of your pain and how it maps onto the cycle, help you set up the diary, explain which tests your case needs and why a normal scan cancels nothing, and set out what to expect from hormonal treatment. Online is a convenient place to weigh drugs against surgery, to prepare for the specialist appointment and to plan a pregnancy. The urgent signs listed above are not assessed remotely: with those you go to hospital.
This material is for information only and does not replace medical advice.
Consult with a doctor about Endometriosis
Discuss your symptoms and possible next steps with a doctor online.
Online doctors for Endometriosis
Discuss your symptoms and possible next steps for Endometriosis with a doctor online.
