The management of endometriosis and reducing symptoms is a journey, say these experts.
While there’s no cure for endometriosis, there are treatment options and pain relievers available to help improve quality of life for those living with the disease.
Many women* choose to use more than one type of treatment at a time, but it’s important to discuss a treatment plan that suits individual needs with a doctor before starting any medication. Fertility expert, Professor Luk Rombauts, recommends that women rank their symptoms for their doctor – from most problematic to least – to inform decision-making.
“That will help the specialist determine what the priorities are, and the treatments that best fit the management of the condition,” he says. “The therapeutic approach for fertility issues will be different than for pain, and these priorities, and the treatments, may change over time.”
Medical treatments for mild endometriosis
Mild endometriosis pain can be treated with over-the-counter pain relief medications, such as paracetamol or non-steroidal anti-inflammatories. This may be enough for some women to live more comfortably with their condition.
A doctor may also prescribe a hormonal treatment – such as the combined oral contraceptive pill, or a progesterone treatment such as the Mirena IUD. Contraceptives can help by suppressing menstrual periods, which may slow endometriosis growth.
Reducing the menstrual cycle as a treatment option isn’t ideal for everyone, says Professor Rombauts.
“A significant proportion of women will not tolerate the hormonal side effects which vary from treatment to treatment,” he says. “The contraceptive pill and progestogens can be associated, for example, with abnormal bleeding patterns, mood swings and some weight gain.”
Surgery for endometriosis can be used to treat both endometriosis pain, and the infertility that’s sometimes associated with the condition.
Endometriosis can only be diagnosed definitively via surgery when doctors see the endometrial-like tissue growing outside of the uterus. This is done by laparoscopic surgery, where a tiny camera and light are inserted via a narrow tube through an incision near the navel. If endometriosis is detected, it may be removed during surgery, sometimes offering immediate relief. However, surgery and removal of tissue is not a cure, and endometrial-like tissue can continue to grow, and may require further treatment.
Laparoscopy has been shown to almost double rates of pregnancy in those with mild endometriosis, and to improve the rates of fertility in women with more serious cases of the condition.
In some cases of endometriosis with high levels of pain, if symptoms are not relieved by medical treatment or laparoscopic surgery, a doctor may recommend a hysterectomy. This is rare and a last resort, only suitable for women who do not want future pregnancies, and where quality of life is being severely affected.
During a hysterectomy, the uterus is removed. This causes a surgical menopause and some women may need to take menopausal hormone therapy.
Less common still is bowel surgery. This may be recommended if the endometriosis is affecting the walls of the bowel and is causing significant symptoms. In this instance, a specialist may want to remove a piece of the bowel.
Physiotherapy may ease endometriosis symptoms and improve a woman’s ability to move and function. It’s often recommended as part of best practice according to the international guidelines for endometriosis, says Alexandra Diggles, a Brisbane women’s health physiotherapist.
“Physiotherapists work to alleviate pain conditions caused by poor biomechanics, neural irritation or altered muscle patterns,” she says.
Women’s health physiotherapist Ruth Schubert agrees. “A pelvic physiotherapist can be an important member of an endometriosis management team … [and] can help manage the symptoms of painful intercourse, bladder and bowel pain, period pain, constipation, deconditioning and fatigue.
“A key focus of treatment will be learning to relax the pelvic floor, which is commonly overactive in endometriosis. A physio can also help implement exercise programs for pain management and for improving physical conditioning.”
Although there’s currently no firm scientific link between diet and endometriosis, it doesn’t hurt to eat well, says nutritionist Tracey Gaibisso.
“Further research is needed in order to fully understand the full influence of diet on the risk of developing endometriosis,” she says. “But current guidelines suggest women may benefit from reducing processed foods, reducing trans fats, increasing consumption of fruit (especially citrus) and vegetables, reducing red meat intake, and increasing fish and seafood.”
One Australian study found that women with endometriosis are frequently diagnosed with irritable bowel syndrome (IBS) – often before their endometriosis is discovered.
“Maintaining a healthy diet is always important and especially so for anyone dealing with a chronic, debilitating condition,” says Elisabeth Gasparini, Manager of Nutrition and Food Services at Melbourne’s Royal Women’s Hospital. “There’s also no harm in being proactive and attempting dietary changes that may be beneficial.”
Choosing not to treat
There’s no rule that says a person living with endometriosis has to treat the condition. Some women may decide they can live comfortably with their symptoms, or that the possible risks or side-effects of medical treatment such as surgery are too great.
As much as endometriosis is experienced uniquely by every individual, so too will the disease progress uniquely.
“For some women, lesions will grow in size over time and may cause distortion of the anatomy of the uterus, tubes and ovaries as these organs stick to each other,” says obstetrician gynaecologist Dr Nesbitt-Hawes.
Many women’s symptoms will improve after menopause, but that doesn’t mean they’re guaranteed to go away.
“The choice of what treatment is best should ultimately be the patient’s, in consultation with her specialist,” says Professor Rombauts.
Talk with your doctor to decide what’s best for you, and don’t be afraid to reassess as your life or symptoms change.
*HCF acknowledges individuals in the transgender community and people who are non-binary and living with endometriosis who may not identify as women.
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