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Endometriosis

Read our guide below which explains about endometriosis.

You can also download a PDF version of this patient information by following the link on the right.

What is endometriosis?

It’s when there’s tissue similar to your womb lining outside your womb (uterus).

This tissue can implant in many places in your pelvis including:

  • your ovaries
  • bladder and bowel
  • on the ligaments attached to the back of your uterus and the space between your vagina and bowel.

Endometriosis can also develop:

  • outside the pelvis in abdominal surgical scars
  • the lungs
  • kidneys
  • almost any other organ in the body.

Endometriosis affects many women and usually presents with pain or reduction in fertility. It may significantly affect quality of your life, but you can treat symptoms by either medication or surgery. Your doctor will discuss the best management option with you depending on your individual circumstances.

What’s the risk of getting endometriosis?

It’s a common condition and occurs in about 5 to 10% of the female population. 1 in 6 women with pelvic pain and 20% of women with fertility problems will have endometriosis.

If your sister or mother has endometriosis, your risk increases.

What are the symptoms of endometriosis?

There are a number of different symptoms although some women may not have any symptoms at all.

Symptoms include:

  • painful periods
  • painful intercourse
  • chronic pelvic pain
  • ovulation pain.

You may also feel pain (usually worse during your period) when opening your bowels or passing urine. You may occasionally pass blood from these organs during your period.

Some women may only get non-specific symptoms such as bloating, nausea and vomiting.

Endometriosis can also make it more difficult to become pregnant.

How does endometriosis produce symptoms?

Just as the endometrial tissue inside the uterus bleeds monthly from menstrual periods, so does the endometrial tissue of endometriosis.

Endometriotic tissue bleeds, irritating the surrounding tissue which then heals over by scarring. The scar tissue may form into a tender nodule or, if the endometrial tissue is in the bladder or bowel, it may cause bleeding when passing urine or stools during your period.

Adhesions, (scar tissue) formed as a result of endometriosis, may obstruct the normal movement of some organs such as the bowel. This will usually result in pain.

How do you diagnose endometriosis?

A vaginal exam will show a non-mobile uterus, tender support ligaments of the uterus or enlarged painful ovaries. Visible endometriotic nodules may be in the vagina or on the cervix (the neck of the uterus).

We can usually diagnose enlarged ovaries (called endometriomas) by ultrasound or other imaging techniques. But the best way to diagnose endometriosis is a  visual inspection of the pelvis by a laparoscopy. This is an operation where we’ll insert a miniature telescope into your tummy while you’re under a general anaesthetic.

What does endometriosis look like?

It may appear as dark brown or black powder burn patches on the peritoneum (the lining of the inside of the abdomen or tummy). Endometriotic cysts can swell
your ovaries.

A biopsy of any of these lesions may help to establish a diagnosis of endometriosis but may not always be conclusive.

How do you treat endometriosis?

By medication or surgery. We try to reduce endometriosis associated pain, improve quality of your life, or to help you try and get pregnant, when appropriate.

Medical therapy

Drug treatment may include analgesia (pain relief tablets) or hormone therapy.

Analgesia

This helps to control pain in endometriosis. You must take these tablets as per the manufacturer’s instructions.

Hormone therapy

Hormonal medication stops monthly menstrual periods and can make endometriosis tissue become inactive. You can take hormones in the form of progesterone tablets or the oral contraceptive pill. You’ll usually take these for 6 to 9 months without a break. This may mean you don’t have a monthly bleed which isn’t abnormal.

You can also have hormones via the Mirena® intrauterine coil.

Another type of hormone treatment prevents ovarian stimulation of endometriotic tissue. These drugs are called Gonadotrophin Releasing Hormone agonists or Antagonists (GnRHa). They’re injections given on a monthly basis for 6 months in the first instance.

Alternatively, you can take GnRH antagonists daily orally. Longer use may result in thinning of your bones but you can prevent this by taking additional hormone replacement therapy (HRT).

HRT may also help with the side effects of GnRHa treatment, which are similar to the menopause but less intrusive. These include hot flushes, night sweats, mood swings and headaches.

Up to 7 in 10 patients will have improvement of their endometriosis-associated pain. But the benefits from medical treatment may be short lived.

Surgical therapy

It removes or reduces as much or all of the visible / palpable endometriosis to improve pain or help fertility. Surgery offers a longer-term effective treatment for endometriosis without the unpleasant side effects of medical therapy.

Ideally, we do conservative (uterine and ovarian sparing) surgery for endometriosis by laparoscopic (keyhole) surgery. Occasionally, we may discuss open surgery via an abdominal incision (cut).

Endometriotic deposits that infiltrate the peritoneum (the skin covering the inside of the abdomen) are known as superficial peritoneal endometriosis (SPE). We can treat this by cutting out with diathermy (heat) or laser.

We normally treat endometriosis that affects the ovaries (ovarian cysts or endometriomas) by  draining of the cyst or by draining and stripping the cyst wall.

Occasionally your gynaecologist may advise the removal of an affected ovary as the best option. When endometriosis affects your
bowel or bladder or when you have deep pelvic endometriosis, you may need a joint surgical procedure with other specialty doctors. We’ll discuss this with you at your gynaecology clinic consultation.

For some patients who have severe endometriosis and have completed their families, a hysterectomy to remove the womb and both ovaries may be the most appropriate treatment.

We usually combine a hysterectomy with removal of all endometriotic tissue to improve the benefits of surgery.

Your gynaecologist will discuss all treatment options with you at your clinic consultation.

Will my symptoms return after treatment?

Endometriosis can be quite a difficult condition to treat. Even though medical or surgical treatment may initially cure your symptoms, it’s not unusual for similar symptoms to return after a while.

If this happens, you’ll probably need further treatment. Make an appointment to see your GP for another referral to your gynaecologist.

Contact us

Ward 16A, Stoke Mandeville Hospital

01296 418107 or 01296 418108 (24 hours)

Wycombe Hospital

01494 526161

About this information

It explains some of the most common side effects some people may have but it’s not comprehensive. If you have other side effects and want to ask anything
else related to your treatment, talk to the gynaecology nurses on Ward 16A (see contact details above).

How can I help reduce healthcare associated infections?

Infection prevention and control is important to the wellbeing of our patients so we have procedures in place. Keeping your hands clean is an effective way of preventing the spread of infections.

You, and anyone visiting you, must use the hand sanitiser available at the entrance to every ward before coming in and after you leave. You may need to wash your hands at the sink using soap and water. Hand sanitisers are not suitable for dealing with patients who have symptoms of diarrhoea.

More help or advice

Contact our patient advice and liaison service (PALS) on 01296 316042 or bht.pals@nhs.net