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Endometriosis: the signs, symptoms and how it affects fertility

Last modified on Monday 18 January 2021

If you have endometriosis, you're not alone. Affecting 1.5 million women in the UK, it's a painful and debilitating condition. We look into the signs, symptoms and treatment options – as well as how it could affect your fertility and pregnancy.

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A new government report into endometriosis has discovered that 58% of women visited their GP more than 10 times before getting a diagnosis – and 53% had visited A&E before getting diagnosed.

Speaking about the delay MP Sir David Amess, who chaired the inquiry, said:

'It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously – or downplayed as linked to the menstrual cycle and periods.'

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MPs are now calling for endometriosis care to improve and the speed of diagnosis to half here in the UK. Good news for sufferers.

In the meantime, here's everything you need to know about this painful and often debilitating condition.

What is endometriosis?

Endometriosis affects 1.5million women in the UK, mostly aged between 25 and 35.

It's a common gynaecological condition that occurs when cells that are usually found in the lining of your womb (the endometrium) are also found elsewhere in your body.

The problem comes when, each month, these cells behave like the ones in your womb do, building up and then breaking down and bleeding. While the bleeding that builds up in your womb leaves the body as your period, these other cells (elsewhere in your body) have nowhere for the blood to escape to.

This monthly pattern causes painful or heavy periods as well as exhaustion, bowel and bladder problems. It can also affect your fertility.

Signs and symptoms of endometriosis

Although it's possible to have endometriosis without experiencing any symptoms, it's likely you'll notice one or more of these:

  • pain in the lower abdomen (tummy), pelvis or lower back
  • pelvic pain that's usually worse just before, and during your period
  • pain during sex and heavy bleeding during your periods
  • difficulty becoming pregnant if you're trying for a baby
  • extreme tiredness
  • feeling depressed due to long-term pain
  • pain during a bowel movement
  • blood in your faeces during your period or blood in your urine

It's not always easy to diagnose endometriosis (as many symptoms could be caused by other things instead) but make sure you see your GP if you notice any of the above.

To confirm that it's endometriosis causing your symptoms, you'll need to have a little operation called a laparoscopy. This is where a camera is inserted into your pelvis to get a good view of your pelvic organs and see any evidence of endometriosis.

What's the treatment for endometriosis?

Unfortunately, endometriosis isn't curable – but it is possible to manage your symptoms by trying various treatment options.

These include:

  • pain medication (anti-inflammatories, such as ibuprofen)
  • hormone treatment (such as using the combined pill or contraceptive patch to stop the production of oestrogen, which encourages the growth of endometriosis tissue)
  • surgery (such as a laparoscopy to get rid of endometriosis tissue or a hysterectomy (removing the womb completely).

Which treatment route you go down will depend on:

  • how old you are
  • whether your main symptom is pain or difficulty getting pregnant
  • whether you want to become pregnant – as some treatments may stop you getting pregnant

It's thought that endometriosis symptoms get worse over time, so do make sure you get help and treatment if you're suffering.

Will endometriosis affect my fertility?

Endometriosis doesn't cause infertility but because it can damage the fallopian tubes or ovaries, it can lead to fertility problems.

Struggling to get pregnant is one of the main complications of endometriosis. In fact, some women only find out they have endometriosis when they're TTC and infertility tests pick it up.

However, although it can reduce your chances of getting pregnant, it is still possible to get pregnant (naturally) – even with severe endometriosis.

According to charity and support group Endometriosis UK:

'Minimal to mild endometriosis sufferers have an almost normal chance of conception but some sufferers are infertile for unclear reasons.

'In cases of moderate and severe endometriosis chances of natural conception are reduced. This is because there are more adhesions (sticky areas of tissue that can cause complications) that can trap the egg and stop it from moving down the Fallopian tube.'

Here's how the condition affects your chances of getting pregnant within a year of trying:

  • 100 women without endometriosis all start trying for a baby. At the end of one year, 84 will be pregnant
  • 100 women with minimal-mild endometriosis all start trying for a baby. At the end of one year, 75 will be pregnant.
  • 100 women with moderate endometriosis all start trying for a baby. At the end of one year, 50 will be pregnant.
  • 100 women with severe endometriosis all start trying for a baby. At the end of one year, 25 will be pregnant.

(Source: Endometriosis UK)

TTC with endometriosis: your treatment options

If you have endometriosis and are struggling to conceive, your treatment options will depend on:

  • how severe your endometriosis is
  • your age
  • how long you've been TTC
  • other fertility factors (such as blocked tubes or sperm problems)

There's no medication that will help with your endometriosis and fertility at the same time. Although hormone treatment can help manage the pain factor of endometriosis, it won't increase your chances of getting pregnant.

Your best option to improve fertility and help pain is to try surgical treatment.

According to Endometriosis UK:

'the removal of cysts, adhesions and nodules during surgical treatment has been found to increase chances of conception.'

If this doesn't work and you're still struggling to get pregnant then there are a number of fertility treatments to consider.

These include:

  • OI (Ovulation induction) - this helps regulate ovulation.
  • IUI ((Intrauterine insemination) – sperm are inserted into the womb through the cervix timed with ovulation, so that they are as close as possible to the released egg. About 80% of couples who will conceive with IUI, do so in the first 4-6 cycles.
  • Ovarian stimulation with IUI – boosts a woman’s fertility so that she produces several eggs in one month.
  • GIFT (Gamete Intrafallopian tube Transfer) – eggs are removed from your ovaries and placed in one of the Fallopian tubes, along with your partner's sperm
  • IVF (In Vitro Fertilisation) – an egg is removed from your ovaries, fertilised with sperm in a laboratory and then implanted into your womb to grow and develop

Your doctor will be able to discuss these and any other options with you.

An illustration showing where endometriosis occurs outside the womb

Will endometriosis affect my pregnancy?

Due to the reasons outlined above, it may take you a bit longer to get pregnant if you have endometriosis.

The good news is that once you're pregnant, your pregnancy should be no different than if you didn't have endometriosis.

Endometriosis UK says:

'There are reports of women who had more pain in the first few months of pregnancy. In general, pain improves, but may return after giving birth as periods return.'

What happens once you've had the baby?

Although your symptoms may seem to improve during pregnancy (thought to be due to hormonal changes) it is likely to get back to how it was once you've had the baby.

Your chances of getting pregnant again will depend on your age and how severe your endometriosis is.

If your symptoms are particularly severe or get worse and you don't plan to have any more babies, a hysterectomy may be an option for you.

Getting help and coping with endometriosis

Your first point of call should be your GP who may refer you to see a specialist called a gynaecologist.

Some women find that complementary medicine (acupuncture, reiki, homeopathy) can help with symptoms although there is no evidence to back this up.

Endometriosis UK also offers advice, information and organises support groups you can attend to help you cope with your condition.

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