This month is Endometriosis awareness month. Despite endometriosis affecting 1 in 10 women in the UK, sadly many women go undiagnosed and the average delay in diagnosis is a shocking 7.5 years. A timely diagnosis could save a woman years of emotional and physical stress and suffering, suffering that can often affect her job, her relationships and her confidence. This month we are calling for better awareness of the condition so that women can get the help they need earlier - this all starts with understanding endometriosis better, what it is, and how to help symptoms.

Endometriosis is a condition where tissue similar to that lining the womb grows in other places, such as the ovaries, fallopian tubes, or on the bladder or bowel. Just like the endometrial tissue inside the womb, this tissue will respond to changes in your menstrual cycle – building up, breakdown and bleeding. But unlike a period, this blood has no way to exit the body and can irritate surrounding structures. This can lead to scarring or bands of scarring called adhesions which can cause pelvic tissues and organs to stick together.

Endometriosis affects 1 in 10 women in the UK. It can affect women of any age including teenagers.

• Pelvic pain and back pain
• Painful periods
• Pain with weeing or opening your bowels during your period
• Pain with sex
• Feeling sick or having diarrhea/constipation with your period
• Difficulty getting pregnant
• Heavier periods
• Mood changes

It can be helpful to take a symptom diary with you to your doctor’s appointment as this will help to highlight your symptoms and concerns. Diagnosing endometriosis can be challenging as it can mimic other conditions so the more information you can provide the better. 

You can find a good symptom dairy here: https://www.endometriosisuk.org/sites/default/files/2022-08/pain-symptoms-diary_0.pdf

At your appointment, a GP or doctor will listen to your symptoms and may wish to examine your tummy and pelvis. This could also include an internal examination. This will help provide the basis for suspecting endometriosis or not. 

You may be referred for further imaging such as an ultrasound scan to help look for other causes of your symptoms for example an ovarian cyst. 

The only way to confirm endometriosis is with a laparoscopy. This is an operation where a camera (laparascope) is inserted into the pelvis through a cut near the belly button. The gynecologist can then look to identify deposits of endometriosis and can also remove them at the same time.  Not everyone with suspected endometriosis will need to have a laparoscopy and treatment options are often started before proceeding to this.

Unfortunately, there is no cure for endometriosis but there are options to help manage the symptoms. 

Not everyone with endometriosis requires treatment and management depends on how you are affected. Endometriosis progression is variable – sometimes it gets better, gets worse, or stays the same. If severe endometriosis is left untreated there is a possibility of complications including blockages or obstructions in the pelvic organs and tissues. 

Hot water bottles and painkillers such as paracetamol or anti-inflammatories like ibuprofen and Naproxen can help. 

Some hormonal medicines and contraceptives will stop ovulation and therefore the menstrual cycle. This can help keep endometriosis calm and even shrink existing areas.

Hormone treatments include contraceptives that will stop you from getting pregnant so aren’t appropriate if you are trying to conceive. They may either stop ovulation or cause lighter, less painful periods and include:

• The combined oral contraceptive pill or patch – often used continuously without the pill-free break meaning periods are temporarily stopped or much lighter. Normally the combined pill stops ovulation whilst you are on it.  
• The Intrauterine system such as the Mirena coil – a progestogen containing coil that thins the lining of the womb and can help make periods shorter, lighter or stop altogether. 
• Other progestogen-only methods including the implant, pill or depot injection

Other hormone treatments that are not contraceptives include:

• Progestogen tablets, including Medroxyprogesterone acetate, Norethisterone, or Dydrogesterone.  
• GnRHa (gonadotrophin-releasing hormone agonists) which are given as injections, implants, or a nasal spray. They are very effective but can cause menopausal symptoms such as hot flushes and are also known to reduce bone density. “Add-back” therapy in the form of hormone replacement therapy (HRT) may also, therefore, be offered. 

Surgery can help to remove patches of endometriosis. Most of the time this is done as keyhole surgery (laparoscopy) but in severe cases, open surgery called a laparotomy may be done. This could also include removing the ovaries and uterus if they are severely affected. If you are ovaries are removed, you may need hormone added back in the form of Hormone Replacement Therapy.  Surgical treatment is more appropriate for women that are trying to conceive. Depending on the extent of your endometriosis, you may need more than one procedure. 

Resources:

https://www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/endometriosis-patient-information-leaflet/

https://www.endometriosis-uk.org/

https://www.pelvicpain.org.uk/