If you’re living with endometriosis, chances are the condition has sparked a lot of questions. What are the best ways to manage the pain, can surgery help, and does it impact fertility?
In this special Q&A this Endometriosis Awareness Month, our Jean Hailes for Women’s Health experts take on the questions women want (and need) answered.
Dr Nanayakkara: When it comes to your health care for endometriosis, a team approach is best. Depending on your specific symptoms, this team might include a GP experienced in women’s health, gynaecologist, physiotherapist, pain specialist, naturopath, psychologist and sex therapist.
Endometriosis is associated with other conditions, such as migraines, irritable bowel syndrome, fibromyalgia and chronic fatigue, so you may need other specialists to assist in these areas as well.
Dr Nanayakkara: A type of keyhole surgery called 'laparoscopy' is the only way to confirm there is endometriosis in your abdomen and pelvis. If endometriosis is found, it can be burnt or cut out.
However, often doctors can identify the condition without surgery, by making an educated guess. Your symptoms, your medical and family history, and the use of ultrasound can give us clues about whether endometriosis is present.
While laparoscopy is the only way to remove endometriosis, some patients manage their symptoms well without surgery.
Dr Nanayakkara: It’s important to have realistic expectations about surgery. The goal is to limit the number of operations and new growths of endometriosis as much as possible. A gynaecologist who is also an advanced laparoscopic surgeon will have significant experience in endometriosis surgery.
Unfortunately, even with excellent surgery, some patients continue to experience pain. When you have persistent pain, the nervous system can change and become more sensitive. As a result, you may experience more pain. Interestingly, learning about the science of pain and your body’s experience of it can help you gain better control of your pain.
If this is your situation, it’s very important to have an extensive support team.
Dr Nanayakkara: There are various options. Pain-relief medicines, such as paracetamol and non-steroidal anti-inflammatory drugs (e.g. ibuprofen), may offer temporary relief. Hormone medicines for endometriosis include combined contraceptives, progestogens and gonadotrophin-releasing hormone analogues (GnRHa). These may help reduce the pain and severity of the condition.
Some antidepressants may offer pain relief too, but they may not help suppress the disease itself. Studies are currently underway to investigate this further.
Remember, there isn’t a one-size-fits-all approach to endometriosis management. These medicines have benefits and risks, and some might not be suitable for your situation. The best management plan combines a range of approaches tailored to you.
Ms Villella: Although research is lacking in this area, some studies suggest that consuming more ‘good’ fats and less ‘bad’ fats may help ease abdominal pain caused by endometriosis. Good fats include foods that contain omega-3, such as oily fish, linseeds and walnuts. Avoiding trans fats (found in commercially baked goods and many processed foods) and limiting saturated fats (found in high amounts in butter, cheese and red meat) may also help. There just isn’t enough evidence to be sure.
Try to maintain a healthy diet for overall wellbeing, and speak to your healthcare team if you suspect a food could be triggering or worsening your symptoms.
Ms Villella: Many women with endometriosis use natural therapies for help with pain, fertility and other issues. Although these therapies are popular, there hasn’t been enough quality research to prove they consistently work. If you are interested in trying natural therapies, my advice is to find a therapist or naturopath who specialises in endometriosis management.
Dr Jane: Endometriosis can have a complicated impact on intimacy. Symptoms can cause pain during sex, while the fear of pain can cause anxiety. Some of the treatments can also result in vaginal dryness, which doesn’t help.
Try to work with your healthcare team, as you may need to combine different approaches to see improvements. These may include hormone therapy, surgery, pelvic floor physiotherapy, couples therapy and sex therapy.
Increasing foreplay and delaying penetration can help with lubrication, as can using good-quality lubricant. Some sexual positions may also be more comfortable than others.
There’s also the timing of sex. For some, it can be more comfortable at certain times of the month. (Often, it’s extra painful just before and after a period.)
Dr Nanayakkara: It depends on the patient. Some people with endometriosis will have no difficulty falling pregnant. For those who do have difficulty, it may be harder to conceive the worse the condition gets. Endometriosis-related issues, such as inflammation within the pelvis, adhesions (scar tissue that binds organs together), immune changes, and eggs that are low in number or quality can affect fertility. However, sometimes surgery to remove endometriosis and adhesions can help improve fertility rates.
Remember, not everyone with endometriosis will require surgery or fertility treatment, and not everyone with fertility issues will have endometriosis. If you’re having trouble conceiving, speak to a women’s health specialist about your options.
Dr Nanayakkara: Seek help from a women’s health specialist and those experienced in endometriosis health care. The days of dismissing severe period pain should be long gone! There are organisations and medical centres, such as Jean Hailes, that offer reliable patient information and specialised health care for managing endometriosis.
Although endometriosis can’t be cured, there are many treatment options that can be tweaked for you. Try to stay balanced, be kind to yourself, set realistic goals and know there are people available to support you.