Treatment & Management Pathway

pathway is a step-by-step guide for doctors to help them identify or treat a particular disease.

The National Institute for Health and Clinical Excellence (NICE) published new guidance on endometriosis diagnosis and management in September 2017. In Wales, we have pathways that are based on these NICE recommendations but with additional advice and best-practice for Wales.

Endometriosis treatment should be guided by what is most appropriate for a particular patient. Some patients might not want to have surgery, while others might not be able or willing to take certain medications. Getting pregnant might be the priority for some, while others might want to reduce the intensity of other symptoms, such as pain or bleeding.

It is important to remember that the treatment and management pathway should be guided by patient preferences and priorities. This means that if someone is not happy that the current type of management is appropriate for them then they should discuss next steps with their doctors. They will not automatically move on to the next step in the pathway.

  1. Discuss your preferences and priorities

    You should be offered endometriosis treatment according to your reasons for seeing a doctor, your symptoms, preferences and priorities, rather than the stage of the endometriosis. This could include, for example, the impact of symptoms on your daily life and whether you plan to have children in the future.

    Questions to consider

    • your age
    • what your main symptoms are, such as pain or difficulty getting pregnant
    • whether you want to become pregnant now or in the future as some treatments may stop you getting pregnant
    • how you feel about surgery
    • whether you have tried any of the treatments before
  2. Pain management

    Your doctor may want to start managing symptoms using some type of pain relief. Pain management won’t stop the progression of disease but it might improve your quality of life.

    There are different types of pain medicines you may be offered, depending on the severity and impact of your symptoms, and your preferences:

    • Normal pain medication such as Paracetamol
    • Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen.
    • Neuromodulators which are usually prescribed as antidepressants but that in low doses can be effective in treating certain types of nerve pain
  3. Hormonal treatment

    Your doctor may offer hormonal treatments that affect the production of female sex hormones to reduce the pain caused by endometriosis, for example, the combined oral contraceptive pill or progestogen.

    Hormone treatments for endometriosis usually work in one of two ways: either they fool the body into thinking it’s pregnant, or they fool it into thinking that it’s going through the menopause. These treatments are temporary and the effects should come to an end when the hormone treatment is stopped. As always, it’s important to read the leaflet that comes with medication and to speak to a doctor or nurse about any side effects or symptoms that are worrying.

    It’s important to be aware that while hormonal treatments can reduce symptoms and slow the spread of the disease, they don’t remove it. They also won’t have any effect on existing scar tissue (adhesions), nor do they improve fertility if endometriosis has already had an impact on your fertility. Hormonal treatments can also cause side effects that some people might find difficult to tolerate. For most people, these symptoms will settle after a few weeks. If they don’t, or if the side effects are too difficult to manage, patients can talk to their doctor about other types of hormonal treatments that are available.

    People may also decide that hormonal treatments are not the right option for them. The doctor will be able to discuss other available hormone treatment options.

    If hormonal treatment for pain management of suspected endometriosis was not effective, the doctor should refer to a gynaecology service or specialist endometriosis service for investigation and treatment options.


  4. Conservative surgery

    Your doctor should discuss surgical management options with you. The aim of any surgery will be to reduce the impact of the disease. This may be to decrease pain, restore normal pelvic anatomy if there are adhesions, or improve your chances of getting pregnant if the disease is affecting reproductive function and fertility.

    Conservative surgery tries to remove the disease while leaving your reproductive organs intact. There are 2 different types of conservative surgery.

    • Ablation
    • Excision

    Both types of surgery are usually performed via laparoscopy (keyhole surgery), but excision will most likely be performed by a specialist endometriosis surgeon or consultant.

    The process of ablation vs excision is illustrated using the image of a flower. With ablation, the flower is cut at the stalk, leaving the root in the ground. With excision the flower is removed entirely, including the root.
    ‘Ablation’ is the removal of the disease at the surface only. ‘Excision’ involves cutting away any endometriosis that is visible to the surgeon on and below the surface.

    Ablation is the most common type of surgical treatment because it’s less complicated, and a greater number of general surgeons are trained to perform ablation compared to excision. In ablation the surgeon uses a laser to burn away any disease they see during surgery. This works best with spots of disease which sit on the surface of pelvic structures or organs. Ablation isn’t very effective at treating deep deposits of endometriosis because the laser cannot penetrate the tissue deeply enough to destroy nodules of disease that lie below the surface. Because the disease is burnt off during ablation, none of the tissue can be sent for biopsy.

    Excision is a less common, specialised treatment that requires more training and is more time-consuming to perform. Excision is most likely to be performed by a specialist endometriosis surgeon or consultant. It involves cutting into the tissues to remove spots of the disease entirely, which means excision can potentially remove much deeper deposits of disease, not just those seen on the surface. The surgeon can send some of the removed tissue to a laboratory for testing (a biopsy) to confirm the diagnosis.

    In some cases, a surgeon may remove tissue in one of these ways during a diagnostic laparoscopy. Conservative surgery can provide relief from symptoms, but they may return later. It’s important to remember that all surgery comes with some risk that you should consider and discuss with your consultant before undertaking any procedure.

  5. Radical surgery

    In rare circumstances your doctor may discuss with you more radical surgery that involves removal of some reproductive or other organs. Your doctor may consider what is known as ‘radical surgery’. This is where one or more of your organs are removed entirely. There are 2 main types of ‘radical surgery’ performed for endometriosis.

    • Hysterectomy
    • Oophorectomy

    Hysterectomy involves removing the uterus (the womb) and other organs, according to the type of hysterectomy:

    • Total hysterectomy (uterus and the cervix removed)
    • Subtotal hysterectomy (only the uterus removed
    • Total hysterectomy with salpingo-oophorectomy (uterus, cervix, fallopian tubes and ovaries removed)
    • Radical hysterectomy (uterus and surrounding tissue, fallopian tubes, part of the vagina, ovaries, lymph glands, and fatty tissue removed)

    Oophorectomy is an operation to remove ovaries. A unilateral oophorectomy is removing one, a bilateral oophorectomy is removing both.

    The ovaries produce hormones that have been shown to play a role in triggering symptoms of endometriosis. If the ovaries are no longer there to produce these hormones, it is thought that the impact of the symptoms of endometriosis can be reduced. Some people have found relief from their symptoms through removing their ovaries as well as the uterus. Once both ovaries are removed, the menopause is immediately triggered if it hasn’t yet started. The menopause itself can cause symptoms that many find difficult to manage, such as fatigue, vaginal dryness and hot flushes. These can be particularly difficult to manage for people who have undergone surgery at a younger age and who may not have people around them experiencing the same feelings at the same time.

    The impact of removing ovaries needs to be considered in light of the risks involved as with all surgery. There are also other less permanent ways of reducing hormones that do not involve removing the ovaries. These options should be discussed with your consultant before deciding on an oophorectomy.

    A total hysterectomy does not always resolve the problems endometriosis has already caused.  Many people report ongoing symptoms due to scarring or damage to other organs such as the bowel.  It’s important to remember that everyone’s experience is different and that there are many people who have had significant relief from endometriosis from less permanent treatments. These include taking hormonal treatments, targeted physiotherapy or through having surgery to remove endometriosis. It can help to talk with others that have had the similar experiences as well as going over the medical risks and benefits with your consultant.

    These procedures are all carried out under general anaesthetic. A doctor may consider oophorectomy or hysterectomy for a number of reasons but both are irreversible. You should discuss the advantages and disadvantages of any surgery with your surgeon. It’s important to remember that all surgery comes with some risk that you should consider and discuss with your consultant before undertaking any procedure.[:]