March is Endometriosis Awareness Month when celebrities, charities, and health professionals work to raise the profile of a disease that can be totally life altering. According to the charity Endometriosis UK, 1.5 million people in the UK suffer with the disease. This is similar to the number of women affected by diabetes or asthma. Despite this, 45 percent of women are unable to name any symptoms of the condition, and confusion and misconceptions about it are common. So, how is endometriosis managed? While new research suggests an existing drug could be a potential non-invasive, non-hormonal treatment, there’s still a lot that needs to happen before it can be prescribed.
Recent research conducted at the University of Edinburgh found a drug that had previously been developed for cancer treatment could be effective in treating endometriosis. Researchers found that the drug dichloroacetate minimised endometriosis lesions and reduced their production of lactate, a potentially harmful waste product. However, the tests at the University of Edinburgh will need to be replicated in clinical trials with real endometriosis sufferers before the drug can be used as a treatment.
While participants for these trials are being recruited, the NHS advises that it could take years before the results from them become available. This means that, although there is hope for new and better ways of managing endometriosis, those with with the condition will still need to be informed about existing treatments and means of symptom management. Here are some of the main ones available.
Hormonal contraception is used in some cases as a way to help manage endometriosis. Per the NHS, “the aim of hormone treatment is to limit or stop the production of oestrogen in your body, as oestrogen encourages endometriosis tissue to grow and shed.”
This means that people can be prescribed the combined pill, implant, or injection. “If you have painful periods then that monthly battering in your pelvis can contribute to more pain down the line as the body starts to remember," says Lone Hummelshoj, chief executive of the World Endometriosis Society, "this can lead to something called central sensitisation which means the body can’t forget that it’s in pain. So, by eradicating the period you don’t have the bleed and you don’t have the pain.”
However, if you’re trying to get pregnant it’d be impractical to take hormonal contraception and hormonal contraception isn't without own side effects and drawbacks. These can include headaches, nausea, breast tenderness, and mood swings of varying severity. Some people also experience an increase in blood pressure.
The hormonal coil or intrauterine system can be used to help people manage their endometriosis. It contains progestogen and which is slowly released into the uterus over a period of five years. According to endometriosis.org the amount of levonorgestrel (hormonal medication) in the blood is about one-seventh of that found in women using the oral contraceptive pill so the side effects can be reduced. However, that doesn’t mean it doesn't sometimes come with its own side effects. These can include acne, lower-back and abdominal pain, and nausea. Having a IUS fitted can also be quite invasive as it’s inserted through the cervix and into the womb.
Gonadotropin-releasing Hormone (Gn-RH) Analogues
This form of treatment sounds complicated and that’s because it has pretty drastic effects on the body. Endometriosis.org states that GnRH analogues have been used to help women with endometriosis for over 20 years and can be administered by a nasal spray or injection. It stops the production of oestrogen bringing on a temporary menopause.
“You can’t really take GnRH analogues for more than six months and ideally you need a hormone replacement therapy to go with them to mitigate the side effects," says Hummelshoj.
Hot flushes, mood changes, sleep disturbance, and a drop in your libido are all recognised as side effects of menopause and are replicated by gn-RH analogues. She says, "if you’re trying to sit your exams at school or university and you need a six month break [from a period] this could be a way.”
There are a few surgical options that endometriosis patients can look into. The main one is laparoscopy, a procedure where surgeons will make small incisions to cut out or destroy endometriosis tissue through excision (cutting it out) or ablation (burning it off). “Surgery has to be carried out by someone who specialises in the surgical treatment of endometriosis. It’s very complex surgery," says Hummelshoj.
Although hysterectomy is not a cure or treatment, it can provide relief for some women with endometriosis. However it's a major surgery which has lifelong impacts. There’s also no guarantee that endometriosis tissue won’t return afterwards. Endometriosis UK explains “if any endometriosis was left behind, or was growing elsewhere inside the body, you may be likely to continue to experience symptoms.”
Endometriosis Awareness Month is a great time to get clued up on a disease that affects so many people. “I want investment in research," says Hummelshoj, "until we understand what causes endometriosis, and what the natural progression of the disease is, or what the different types of the disease are then we can’t develop targeted treatments.” The management of the condition is personal to each individual, but the possibility of a a less invasive and non hormonal treatment is definitely something to feel hopeful about.