What is Endometriosis?

Endometriosis is a chronic and debilitating condition where tissue from the lining of the womb grows outside of the womb in areas such as the bladder, bowel, fallopian tubes and ovaries.

As we know, each month the lining of the womb builds up to prepare for a potential pregnancy and if no implantation occurs it breaks down and bleeds, resulting in a period.

In endometriosis tissue outside of the womb does the same, each month it swells and sheds, resulting in blood loss that has no way to leave the body. This causes extreme pain and inflammation. In some women due to the chronic inflammation it can cause bowel, bladder and fertility issues.

This condition impacts the lives of one in ten women and girls between the ages of approximately 11 and 55. It most commonly affect women in their thirties and forties. This is around 1.5 million women in the UK alone.

The low awareness of endometriosis among the medical profession has led to an average diagnosis time of 7.5 years. It is thought to cost the UK economy a staggering £8.2 billion each year and impacts sufferers’ education and long term career. It has a huge impact on the mental health of the sufferer and has been linked to higher levels of depression.

Cause of endometriosis is not fully understood, many theories have been suggested It is most likely a combination of different factors including genetic predisposition and environmental factors.

What are the symptoms of Endometriosis?

Endometriosis can present as a wide variety of symptoms and can include a combination of the list below:

  • Lower back pain
  • Lower abdominal pain
  • Pelvic pain
  • Pain which worsens during your period
  • Pain after sex
  • Extreme period pain that stops you from doing normal activities
  • Pain on passing urine and opening your bowels when on your period
  • Heavy periods
  • Association with low mood and depression
  • Blood in the stool
  • Bleeding from the back passage

If you are experiencing any of these symptoms or believe that you have endometriosis, the first step to take is to speak to your GP.

During your consultation your GP will ask you more about your symptoms, the timeline of how you have been feeling and may suggest an examination.

Your GP may then refer you to a gynaecologist for specialist input.

When discussing your symptoms with your GP or specialist, it may help to note down your symptoms in a diary to help with diagnosis and management. Similarly, once you are on a treatment, continuation of the diary will help to analyse whether the treatment(s) are working for you.

Complications of Endometriosis

Endometriosis is associated with fertility problems, however, the cause is not fully understood. Not all women with endometriosis will experience fertility problems, many will get pregnant without any treatment. With severe Endometriosis, adhesions (scar tissue) is more common in the pelvis. Adhesions can reduce the chances of natural conception as they can obstruct the movement of the egg through the fallopian tube,.

For Endometriosis, medications have not been found to increase fertility. Some surgical treatments (as discussed below) may improve fertility through the removal of adhesions and cysts. For women with endometriosis that is impacting their fertility there are many options to consider such as IVF. There are many factors that impact the best fertility treatment for each woman. The treatment choice will be tailored by a specialist doctor for each individual case.

Although endometriosis can impact the time it takes to get pregnant, once you are pregnant some women may experience increased pain in the first couple of months but otherwise, the pregnancy is expected to be no different to a woman without endometriosis. 

Endometriosis can affecting the bowel and bladder can be very complex to treat and may require specialist endometriosis services.

Surgery for endometriosis and the bowel or bladder may involve cutting away part of the bladder or bowel. These are major complex operations, after bladder surgery you may be required to have a catheter for a few days post-surgery or a temporary urostomy. A urostomy is a small hole into your bladder through your tummy that is connected to a bag for waste.

Similarly with bowel surgery, if a section of bowel is removed some women require a temporary colostomy whilst the bowel heals. A colostomy involves diverting a part of your bowel to a hole in the abdomen attached to a bad that collects waste.

Endometriosis UK has more information regarding bowel and bladder surgery.

What treatments are available?

There is currently no cure for endometriosis. Treatments options are focused to relieve the symptoms rather than cure the condition. Treatments include a combination of medications, lifestyle changes and surgical options. Each woman has an individual experience of her symptoms and wishes going forwards, individualised treatment combinations will reflect this.

It is important to explore different treatment combinations that are available and ensure an informed decision in regards to your personalised treatment.

When considering treatment options, your gynaecologist will explain the risks and benefits of each going forwards and together, will advise a decision on which treatment is right for you. Factors that can influence the choice of treatment include age, symptoms, whether you wish to become pregnant, previous treatments that have been tried.

If you do decide that you wish to be treated, some of the options are listed below:

  1. Painkillers – Your GP will discuss your pain in detail and illustrate the levels of pain relief available. Initially, simple pain killers may be used such as paracetamol and non-steroidal anti-inflammatory (NSAIDs) medications such as ibuprofen*.

If your pain is not controlled by using a combination of these pain killers after continued use, inform your GP as stronger pain relief may be required. This can include codeine-based pain relief or pain modifiers such as tricyclic antidepressants.

For more complex pain relief, you may be referred to a specialist pain clinic where specialised treatment options, advice and support can be provided to manage long-term chronic pain.

*Ensure when using NSAIDs to take medication with food as increased risk of stomach ulcers*

  1. Transcutaneous Electrical Nerve Stimulators (TENS) Machines – TENS machines are often used as an alternative to medications for pain relief. A TENS machine is small and attaches to a belt, it sends small electrical pulses to the skin via small electrodes. TENS machines are thought to work by disrupting the process of pain signals. The small electrical impulses are not painful. Your GP can discuss whether you are able to use a TENS machine as if you have certain conditions or if you are pregnant they are unsuitable.
  2. Hormone Treatment – Hormone treatment for endometriosis is focused around reducing oestrogen production. By doing so, the tissue produced in endometriosis is unable to grow and symptoms will be reduced.

Hormonal treatments in endometriosis are temporary and can be reversed, although they may improve symptoms and slow the growing process of tissue, they do not increase fertility. The different hormonal options have different risks and benefits, each option should be fully discussed with your doctor to evaluate which is most appropriate for you.

Hormone treatments include :

Combined oral contraceptive pill (COCP) – This pill contains both oestrogen and progestogen. With endometriosis, this pill prevents ovulation and in turn reduces pain around your time of menstruation and can make periods lighter.

Progestogens – Progestogen is a synthetic version of the natural hormone progesterone. When taken in endometriosis, they work by preventing the thickening of the lining of the womb and therefore the thickening of endometriosis tissue. Progestogens can come in many different forms such as the Mirena coil, an injection, an implant and a pill. Each form has different advantages and disadvantages. Your doctor will be able to advise you which may be best for you.

More complex hormone treatments are available and can be discussed with your specialist.

  1. Surgical Treatment in Endometriosis can be used to not only improve symptoms but also increase fertility.

There are two main options for surgery with endometriosis, firstly, a more conservative approach of a laparoscopy.

A laparoscopy is more commonly known as ‘key hole surgery’. This surgery will involve a general anaesthetic, meaning you will be asleep and will not feel anything during the procedure. Your surgeon will make several small incisions into your abdomen. To visualise your endometriosis, a laparoscope (a small tube with a camera at the end) will be inserted. Once visualised, the surgeon will aim to destroy or remove the tissue seen in endometriosis. They may use heat, electric current or a laser to do so.

This treatment can result in a reduction of the endometriosis, however, it can grow back over time. Before and after your surgery you may be required to take a hormone treatment to aim to reduce the changes of recurrence.

The second option with surgery is a hysterectomy (removal of the womb). This is only considered when other treatments including conservative surgery have not been successful and the woman is not planning on starting a family.

Having a total hysterectomy is a big decision and a major surgery, it should be discussed extensively beforehand with you GP or gynaecologist. A hysterectomy is not reversible and although it is unlikely, in some cases, endometriosis symptoms have returned after the operation.

A bilateral oophorectomy involves the removal of both ovaries. Removal of the ovaries and the womb in a hysterectomy and oophorectomy reduces the likelihood of recurrence of endometriosis. Removal of both ovaries will result in an irreversible menopause.

Similarly to any surgical procedure there are risks such as infection and bleeding. Before any procedure, your surgeon will run through the full list of potential complications of the procedure.

After surgical treatment, you may be advised to see a physiotherapist for rehabilitation.

Endometriosis and Wellbeing

Endometriosis, like any other chronic condition can have a huge, long term impact on physical and mental health. It may stop women from doing activities that they enjoy and can impact their daily life leading to issues with emotional wellbeing such as depression. It is important to monitor your wellbeing whilst coping with chronic conditions as you may need emotional support.

There are many support networks for women with Endometriosis, your GP or specialist may provide information on local groups.

Karen’s story

“I was 19 when I first went to the doctors. They didn’t seem to understand the intense pain I was having with my periods. I was young and didn’t like to be a nuisance, so I didn’t go back but just put up with the pain, which gradually got worse.
When I was 22, I went to another doctor who was more sympathetic. She thought I had IBS (irritable bowel syndrome) but the pain still carried on. Eventually I had a laparoscopy, which showed I had endometriosis.

“Over the next 10 years I underwent several operations. I also went through three cycles of IVF, unfortunately without success. Things came to a head when, at the age of 35, I had a hysterectomy including removal of one of my ovaries. The operation gave me a new lease of life. I was able to do more exercise as a result and even dropped two dress sizes!

“My advice to other women would be not to be afraid of getting a second opinion if you feel you aren’t being listened too. The hysterectomy improved things for me but everyone is different. Ask about the options and be clear about the consequences of any treatment you are having.”