Treatment & Management Pathway

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

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

A doctor may offer medicine that changes hormone levels to slow the growth of endometriosis. This is intended to keep hormone levels stable, avoiding the fluctuations that typically take place with the menstrual cycle. Endometriosis seems to be aggravated when exposed to the hormone oestrogen in particular. Many hormone treatments are designed to directly reduce the amount of oestrogen in the body. This in turn can reduce symptoms and suppress disease activity.

Hormonal medicine can slow the worsening of endometriosis disease but it will not stop it entirely or cure disease that already exists. This means that hormones cannot cure problems that endometriosis has already caused or can cause in the future by the disease worsening over time (e.g., infertility).

The different types of hormone-based treatments cause similar benefit but have different side effects. It’s likely the first hormonal treatments offered would be like those prescribed for contraception as these can reduce pain.

If these are not effective, you may be offered treatment with a hormone that mimics the menopause called gonadotrophin releasing hormone (GnRH). GnRH is not often offered first because long-term use is associated with osteoporosis. This is a health condition that weakens bones, making them fragile and more likely to break in the long term. Since adolescent and young women have not reached their optimal bone density, GnRH is not advise unless as second line treatment and only if other treatments with less severe side effects have not helped or are not tolerated. GnRH is not licensed as a form of contraception, so you should still use contraception while using them. You can learn more about these options here.

You should discuss the different options and side effects with your doctor to work out which is best for you.

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.

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.

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.