Medically Reviewed April 2023, by Mr. Bryan Mayou (GMC: 1414396) - founder of the Cadogan Clinic and one of the world's leading
plastic surgeons
What is Endometriosis?
Endometriosis is a female medical condition where tissue similar to that found in the lining of the uterus (womb) is found growing outside of this space, such as on or in the fallopian tubes, ovaries, vagina or intestine.
It is a long-term medical condition and although some women are fortunate enough not to experience any endometriosis symptoms, for others the condition can have a devastating impact on their quality of life. Endometriosis pain can be debilitating and the condition sometimes causes infertility. Other complications may include the development of ovarian cysts.
There is currently no cure for endometriosis. Fortunately there are a number of endometriosis treatments available, including hormone therapy, endometriosis surgery and, in extreme cases, hysterectomy (surgical removal of the uterus).
Endometriosis can be a very difficult condition to live with. As well as the pain and other physical symptoms, endometriosis can have a huge impact on mental wellbeing. But you don’t have to just ‘put up’ with endometriosis symptoms. Our team of expert consultants will help you to find an endometriosis treatment that is right for you.
What are the symptoms of Endometriosis?
Although endometriosis symptoms vary from woman to woman, these are common symptoms that you may find yourself struggling with. You may be experiencing one, some or all of these.
- Heavy periods: Heavy periods are a common symptom of endometriosis. You may find that you get through a high number of sanitary pads or tampons during your monthly bleed, and may bleed through your clothing.
- Period pain: Endometriosis pain during your period can feel so intense that it can actually stop you from carrying out day-to-day activities. This is because the uterine tissue that has grown on your ovaries or fallopian tubes can cause immense pain when shed.
- Pain during sex: Persistent pain during sex, also known as dyspareunia, is a common symptom associated with endometriosis.
- Pain when going to the toilet: You may find urinating or having a bowel movement painful when you are having your period. This is because endometrial tissue can be found inside and outside the bladder, on the surface of the bowel and sometimes in the wall of the bowel.
- Pelvic pain: Pelvic pain in your abdomen or lower back is a common endometriosis symptom.
- Digestive problems: If you have endometriosis in the bowel, you may find you experience symptoms which are similar to irritable bowel syndrome (IBS) such as diarrhoea or constipation. Nausea is another common endometriosis symptom. This may feel worse during your period and when eating.
- Bleeding when going to the toilet: If you have endometriosis in your bladder or bowel, you may notice blood in your urine or bleeding from your rectum.
- Struggling to conceive: Endometriosis can cause a build-up of tissue in and around the fallopian tubes which can make it more difficult for the sperm to reach and fertilise the egg.
What are the stages of Endometriosis?
Endometriosis is typically broken down into four different stages. This is graded according to the spread and depth of the endometrial tissue, and the areas of the body affected.
- Stage 1 (minimal): There are a few small implants, wounds or lesions on the organs or the tissue lining your pelvis or abdomen. Little to no scar tissue is present.
- Stage 2 (mild): There are more implants than in stage 1 and these are deeper in the tissue. There may be some scar tissue present.
- Stage 3 (moderate): There are many deep implants, more than in stage 1 and 2. Small cysts may be present on one or both ovaries, along with thick bands of scar tissue called adhesions.
- Stage 4 (severe): There are many deep implants and thick adhesions present, as well as large cysts on one or both ovaries.
Endometriosis doesn’t always progress from one stage to the next. If untreated, the condition may get worse, improve or stay the same.
It is important to remember that the extent of the endometriosis does not always tally up with the severity of the symptoms. A woman with mild endometriosis may experience intense symptoms while someone with severe endometriosis may not experience intense symptoms.
What causes Endometriosis?
It is not known what causes endometriosis, although there are a number of theories. Your endometriosis may be due to one or a combination of one of the following:
- Genes: Endometriosis tends to run in families, so if your mother has the condition, then you are likely to have it too. Research has shown that endometriosis can get worse down the generations. The condition can affect people from certain ethnic groups more than others.
- Immune system problems: The immune system is the body’s natural defence against infection and illness. Sometimes there may be a problem with a person’s immune system which may be a cause of endometriosis.
- Retrograde menstruation: This condition causes the uterine lining which should leave the body as a menstrual bled to flow upwards through the fallopian tubes instead. The lining then embeds itself on the pelvic organs.
- Spread of endometrium cells: Endometrium cells can spread through the body in the bloodstream or lymphatic system. This system is a series of tubes and glands that form part of the body’s natural immune system.
Any woman who has menstrual periods can get endometriosis. The condition is most common in women aged between 25 and 40. Sometimes endometriosis can continue after menopause, but this is rare.
How is it diagnosed?
If you are experiencing endometriosis symptoms, you should make an appointment to see a doctor. They will ask you questions about your symptoms. Although you may find it embarrassing, it is important that you answer open and honestly. Rest assured that our expert consultants will treat you with the respect and dignity you deserve.
The doctor will then want to carry out a minor procedure called a laparoscopy, more commonly known as keyhole surgery. Laparoscopy is a minimally-invasive surgical procedure which allows the surgeon to see inside the abdomen and pelvis without having to make large cuts through the skin. Instead only a small incision is needed, just big enough to allow a small tube with a light and camera into the body. The pictures from the camera will appear on a screen, allowing the consultant a clear view of your pelvic organs. The procedure is carried out under a general anaesthetic, so you won’t feel any pain. A laparoscopy is carried out as a day case and has a quick recovery time.
A laparoscopy is the best and only way to make an endometriosis diagnosis.
How is Endometriosis treated?
There is no cure for endometriosis, but there are several options when it comes to endometriosis treatment. Your treatment will depend on your age, the stage of the endometriosis and the extent and severity of your symptoms.
Non-steroidal anti-inflammatory drugs (NSAIDs)
If your symptoms are not severe, your doctor may recommend pain management with NSAIDs, such as ibuprofen.
Hormone medicines and contraceptives
The female sex hormone oestrogen encourages endometrial tissue to grow and to shed. By limiting the amount of oestrogen using hormone therapy, this can reduce the amount of endometrial tissue in the body. Hormone treatments include the combined oral contraceptive pill, containing oestrogen and progestogen, which can stop ovulation, therefore making periods lighter and less painful. There are several different types of combined oral contraceptive pill available and it may take some trial and error in order to find a brand that suits you.
Alternatively, the doctor may want you to try progestogens, for example the Mirena intrauterine system (IUS), the contraceptive injection, the implant or progestogen pills. This synthetic hormone behaves like the natural hormone progesterone and works by preventing the uterine lining and endometriosis tissue growing quickly. However there are side effects attached to progestogens, such as weight gain, bloating, mood changes and irregular bleeding.
Keyhole surgery (laparoscopy)
Small incisions are made in the abdomen and a small light source and camera are inserted. The pictures are projected onto a screen and the surgeon uses these images to carefully guide fine surgical instruments to apply heat, a laser, an electric current, or a beam of special gas to the patches of endometrial tissue. This will destroy the tissue. If the endometriosis has caused any ovarian cysts to form, then these can also be successfully treated at the same time.
Hysterectomy
A hysterectomy is a surgical procedure to remove the uterus (womb). Once the uterus has been removed, your periods will stop. However, if the ovaries are left in place, the endometriosis is more likely to return, so the surgeon may suggest that your ovaries should be removed at the same time (oophorectomy). If your ovaries are removed as part of your hysterectomy, you will go through menopause immediately after the operation, regardless of your age. This is known as a surgical menopause.
Hysterectomy is a major surgery and is usually only considered if all other treatment options have not worked
Infertility and Endometriosis
Endometriosis is the leading cause of female infertility, with an estimated two in every five women with the condition affected.
Endometrial tissue on the ovaries can prevent the release of eggs, block sperm from travelling up the fallopian tubes or stop a fertilised egg from moving down the tubes to implant in the uterus. The endometrial tissue can be surgically removed, clearing the way for conception. But even with this tissue removed, endometriosis can also affect the layer of tissue lining your uterus, preventing implantation, and the condition may even cause your body’s immune system to attack the embryo.
Your doctor may suggest intrauterine insemination (IUI), a fertility treatment which involves putting your partner’s sperm directly into your uterus. In vitro fertilisation (IVF) is another option to consider, but success rates can vary.
If you have surgery to remove your uterus (hysterectomy), then you will not be able to get pregnant.
None of the hormone treatments will have any long-lasting effects on your fertility.
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Frequently Asked Questions
How can I ease the pain of endometriosis?
Over-the-counter painkillers, such as paracetamol and ibuprofen, can help to ease endometriosis pain. A hot water bottle, heat pad or taking a warm bath are also quick and effective methods of alleviating the pain associated with endometriosis.
Exercise releases feel-good endorphins, which act as a natural pain relief. So although you may not feel like exercising, it may help manage the pain. Lower intensity exercises, such as yoga, stretches the muscles in the pelvis, which can also help with pain relief.
How serious is endometriosis?
Endometriosis that causes debilitating pain and very heavy periods can have a serious impact on a woman’s quality of life. It can also make it hard to conceive and can leave a woman facing difficult choices regarding her plans for a family.
Complications of endometriosis include the appearance of ovarian cysts. If these rupture, are very large or block the blood supply to the ovaries, then this can cause pain, urinary problems and digestive problems. Large ovarian cysts may lead to a condition called ovarian torsion, a rare complication which sees the ovary twist on the tissues that support it. If not treated promptly, it can cause the ovary to die.
Sometimes ‘sticky’ areas of endometriosis tissue may cause organs to join together, requiring surgery to separate them.
Where can endometriosis occur?
The most common sites of endometriosis include the ovaries and the fallopian tubes, which connect the ovaries to the uterus. It is also common to find endometrial tissue on the outer surface of the uterus and the lining of the pelvic cavity, as well as on ligaments that support the uterus and what is known as the posterior cul-de-sac (the space between the uterus and rectum) and the anterior cul-de-sac (the space between the uterus and bladder).
But endometriosis often affects the area beyond a woman’s reproductive organs. Endometrial tissue may be present in the intestines, rectum, cervix, vagina, vulva and even attached to abdominal surgery scars.
Endometriosis affecting the bladder is rare, but tissue can be found on the outer surface of the bladder as well as inside the bladder lining or wall. This can cause a nodule, which can also affect the ureter. If left untreated, bladder endometriosis symptoms are likely to get worse.
Endometriosis can also affect the bowel, with tissue found on the surface of the bowel and sometimes penetrating the bowel wall. In some cases, recto-vaginal nodules can start as superficial endometriosis on the surface of the bowl and progress to infiltrate the bowel wall.
Will I need a hysterectomy if diagnosed with endometriosis?
You will not necessarily need a hysterectomy if you have been diagnosed with endometriosis. A hysterectomy is a major operation which will have a significant impact on your body. This will usually only be considered if other endometriosis treatments have been tried and failed.
A hysterectomy means that you will not be able to get pregnant and if your ovaries are removed as part of the surgery, you will go into menopause immediately afterwards. Having a hysterectomy can also have a huge emotional impact too. But on the plus side, a hysterectomy can relieve you of pain and heavy periods and improve your quality of life. Your surgeon will discuss treatment options with you.
What surgical options are available to treat endometriosis?
A laparoscopy (keyhole surgery) is used to diagnose the condition and, in severe cases, remove or destroy the unwanted tissue. This type of surgery will relieve symptoms and sometimes improve fertility. However the problems can recur if there is any endometrial tissue left behind. Your doctor may recommend hormone treatment before or after surgery to avoid this.
A hysterectomy is an effective surgical treatment for endometriosis, but it is a major operation and will leave you unable to have children.
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