The Invisible Endometriosis Epidemic
Antonia Jenkinson
What is endometriosis?
According to the NHS, endometriosis is a condition where tissue similar to th lining of the womb grows in other places, like the ovaries or fallopian tubes.
Each month, cells in the tissue react the same way as those in the womb by breaking down and bleeding. Unlike cells that leave the uterus as a period, this blood from endometriosis tissue has no way of escaping, causing pain, inflammation, and the formation of scar tissue. Repeatedly going through the menstrual process can cause people with endometriosis to end up with chronic pain, fatigue, depression, and difficulties having sex/conceiving. Endometriosis can affect anyone with a uterus, including teenagers, up until the menopause, although the impacts of endometriosis can be felt for life. It is a long term condition that can have significant impacts on sufferers lives. In the UK, approximately 1.5 million people live with the condition, according to endometriosis-uk.org.
Endometriosis is the second most common gynaecological condition in the UK – so why is there so little information available? Due to a lack of sufficient research and education, the cause for endometriosis is unknown and in the UK it takes an average of 8 years from onset of first symptoms to get an accurate diagnosis.
Getting treated in the UK.
Unfortunately for patients, there is no cure for endometriosis, however there are treatments which can make symptoms more managable…
The current treatments available for endometriosis patients in the UK exist predominantly to ease the severity of symptoms to improve the quality of life for the person living with the condition. The healthcare professional you build a relationship with during the process of diagnosis will suggest the appropriate course of action for each individual case.
One of the options for endometriosis treatment is surgery. Conservative surgery consists of removing deposits of endometriosis tissues through keyhole surgery. This surgery can provide relief from symptoms, however it is possible for the deposits to regrow after time. Radical surgery is also considered if the person suffering from the condition is not planning to start a family. Radical surgery tends to consist of hysterectomies (removal of the womb) or oophorectomy (removal of the ovaries.) Both of these options are irreversible.
Hormone treatments are available as a less permanent treatment in the UK. Introducing hormones which block or reduce the production of oestrogen in the body will stop endometriosis from growing and will help to relieve the symptoms of existing endometriosis. All hormone treatments are reversible and temporary, so are perfect for patients who think they will consider starting a family. The following hormone treatments are available to those with endometriosis:
- Combined oral contraceptive pill
- Mirena coil
- Progestogens
- GnRH analogues
- Testosterone derivatives
- Danazol
Supporting endometriosis
It can be really difficult to see a loved one in pain, especially when you feel like you can’t help. This section of the post will detail pain management for people with endometriosis. .
The first option is heat. A hot water bottle or heated wheat bag can be effective in reducing pain for less severe cases. Being in a comfortable environment will also reduce stress and consequently pain.
The most effective form of painkiller for people with endometriosis are NSAIDs, like ibuprofen. They work most effectively if the painkiller is taken the day before a period or pain is expected. In order to reduce side effects from such painkillers, it is recommended to take them with food. Codeine-based painkillers are also very effective painkillers but they can aggravate symptoms in endometriosis as they can cause constipation and gastro-intestinal upset. TENS machines have also been found to be effective in pain management without using painkillers, however they are not suitable for anyone who is pregnant or has a heart condition.
Physiotherapists can develop exercises based on individual cases to relax and strengthen the pelvic floor muscles, reduce pain, and manage stress and anxiety.
The World Health Organization (WHO) note that one of the most important parts of early diagnosis and effective treatment is access to appropriate healthcare which is limited in many low income countries, and proves a barrier for low and middle-income households. In many countries, as identified by the WHO, general public and healthcare providers are unaware of the life-altering pelvic pain caused by endometriosis, leading to a normalisation of pain and stigmatising discussion. Diagnostic delay results in long waitlists for effective treatment. Huge knowledge gaps still exist but WHO is collaborating with organisations to facilitate and support the collection of endometriosis data collection to improve global healthcare for people with endometriosis.
No one should have to live in pain - if you affected by any of the symptoms identified in this article, please contact your GP or gynaecologist.