Signs of ‘invisible life-changing illness’ affecting women

Millions of women around the world are unknowingly living with a painful and uncomfortable condition. People are being urged to understand the warning signs and to speak to a doctor if they regularly experience bad periods and any of the symptoms listed below.

Endometriosis is surprisingly common, according to the NHS. It is a condition where tissue, similar to the lining of the womb, grows in other areas – like the ovaries and fallopian tubes.

It affects approximately 10% (190 million) of women and girls of reproductive age worldwide. Endometriosis can affect women of any age however.

It is a chronic condition that can significantly impact your life, but there are treatments available. The exact cause of endometriosis remains unknown, however, it’s not due to anything you’ve done or haven’t done.

Genetic, environmental, and anatomical factors may contribute to the development of endometriosis. Endometriosis UK provides a wealth of online support for women living with endometriosis.

The symptoms of endometriosis can vary greatly. Some women are severely affected, while others may not experience any noticeable symptoms.

Diagnosing endometriosis can be challenging due to the wide range of symptoms, and many other conditions can cause similar symptoms. Some signs to watch out for include:

  1. Pain in your lower abdomen or back (pelvic pain) – usually worse during your period.
  2. Period pain – that prevents you from carrying out your usual activities.
  3. Pain during or after sex.
  4. Pain when urinating – or defecating during your period.
  5. Feeling sick, suffering from constipation or diarrhoea – or spotting blood in your urine or stool during your period could indicate endometriosis.

Struggling to conceive might also be a symptom. Heavy menstrual bleeding is another typical sign.

You may find yourself using an excessive number of pads or tampons, or even bleeding through to your clothes. For some women, the impact of endometriosis on their lives can be substantial, potentially leading to depression.

At present, there’s no cure for endometriosis, but there are treatments available that can help manage the symptoms. These include:

  • Painkillers such as ibuprofen and paracetamol.
  • Hormone medicines and contraceptives, including the combined pill, contraceptive patch, intrauterine system (IUS) and contraceptive implant, and medicines called gonadotrophin-releasing hormone (GnRH) analogues.
  • Surgery to remove patches of endometriosis tissue.

In more severe cases, surgery may be needed to remove parts or all of the organs affected by endometriosis, such as part of your colon, your appendix or womb (hysterectomy). Your doctor will discuss these options with you. In some cases, they may suggest waiting before starting treatment, to see if your symptoms improve on their own.

If you suspect you have symptoms of endometriosis, especially if they’re having a big impact on your life, book an appointment with your doctor.

It may help to write down your symptoms before seeing a doctor. Endometriosis UK has a pain and symptoms diary (PDF, 238kb) you can use.

It can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms. You may be referred to a specialist for some further tests, such as an ultrasound scan, MRI or laparoscopy.

Endometriosis can be a difficult condition to deal with, both physically and emotionally. As well as support from your doctor, you may find it helpful to contact a support group, such as Endometriosis UK, for information and advice.

In addition to detailed information about endometriosis, Endometriosis UK has a directory of local support groups, a helpline on 0808 808 2227, webchat, and an online community on HealthUnlocked for women affected by the condition.

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