There’s something odd about March if you’re among the estimated 200 million people who suffers from endometriosis worldwide. Something strange about seeing people discuss the condition openly when, for so much of the year, it flies under the radar.
In fact, ordinarily endo’s profile is so low that 62 per cent of young people in the UK between the ages of 16 and 24 admit they don’t know what it is. Sufferers face a long road to diagnosis, and often find their pain is not believed, normalised and downplayed.
In October 2019, the Westminster’s fledgling All Party Parliamentary Group on Endometriosis conducted an inquiry into the disease, with shocking results. Not only had the delay between onset of symptoms and diagnosis increased from seven and a half to eight years, but 43 per cent of patients who presented with endometriosis symptoms had visited hospital more than five times to seek help, and 21 per cent more than ten times. Unfortunately, patients are often forced to become self-declared experts, seeking out as much information as possible so as to be able to advocate for diagnosis and treatment. So, to help provide all the information you need in one place, we’ve put together this ultimate guide.
What is endometriosis?
Endometriosis is a chronic inflammatory condition where tissue similar to the endometrium is found growing in areas throughout the body. This tissue causes a chronic inflammatory reaction, leading to pain and adhesions, which are made up of scar tissue that can attach to or ‘stick’ organs together. This causes debilitating pain, which can be worse at different times in the month, such as during ovulation or menstruation.
The disease can emerge at any age, including before your first period – symptoms have been recorded in girls as young as eight – and can persist into the menopause. And while the vast majority of sufferers are cis women, endometriosis also impacts trans-men and non-binary people, and has even been diagnosed in 20 cis males.
Endometriosis is a whole-body disease which can affect almost every organ of the body, though the most common places it’s found are the ovaries, the fallopian tubes and the pelvic sidewalls. It’s also found outside of the pelvis in areas such as the bladder, bowel, diaphragm, upper urinary system and the lungs, where it is known as extra pelvic endometriosis.
What are the main symptoms of endometriosis?
While endometriosis is often downplayed as ‘just a bad period’, it is classified as one of the most painful known chronic conditions by the NHS, and agonising periods are just one of a while host of symptoms. Others include non-cyclical pelvic pain, painful sexual intercourse and orgasms, painful bowel movements and urination, fatigue, nausea and digestion issues including the infamous ‘endo belly’ which presents as abdominal swelling. Some sufferers experience daily chronic pelvic pain, whereas others have no symptoms at all. Everyone’s endometriosis journey is different, and their symptoms will reflect this.
How is endometriosis diagnosed?
Endometriosis can only be diagnosed through a surgical procedure called a laparoscopy, which is keyhole surgery carried out under a general anaesthetic. Suspected tissue is then cut out (excised) and sent to a pathology lab for a histology report, confirming the disease.
Endometriosis can sometimes also be picked up through transvaginal ultrasounds or MRI scans, but it’s important to note that endometriosis doesn’t always show up and the current Nice Guidelines for diagnosing endometriosis state “Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal.”
Please remember that recovery times for your laparoscopy will vary depending on your endometriosis removal method, the extent of the disease and what was done in your procedure. Many people with endometriosis feel pressure to recover by a certain time or are not given an accurate recovery timeline. Take as long as you need to rest – it’s important to remember that this is your journey at your pace and it’s okay to listen to your body and give it the time it needs to recover from surgery.
Questions to ask before a laparoscopy
It’s important that before you sign off on a laparoscopy, you have all the information you need to make the right choice for you and your care plan. This is called informed consent and should be a key element of your healthcare journey. We’ve put together a few questions to ask your surgeon about the procedure, so you can get all the facts you need to make the right decision for you.
- If you find endometriosis, what is your removal method – ie. excision or ablation?
- Where will you check for endometriosis? Do you check for extra pelvic endometriosis such as in the bladder or bowel?
- Will you send a sample of my excised tissue to pathology?
- Will you take photographs or videos during my procedure, and can I have copies?
- Will you meet me after the procedure to go through what was discovered? If not, when will my follow up be?
- If I am diagnosed with endometriosis, will you help me devise a long-term care plan, including referral to specialists such as an endometriosis nurse, a pelvic pain specialist or a pelvic floor physiotherapist?
How is endometriosis treated?
Unfortunately, there is no cure for endometriosis, but there are many ways people can help manage their pain and symptoms. That said, finding the right care and support can be challenging as misconceptions around endometriosis still persist, even in 2021.
During a laparoscopy, endometriosis is treated via the ‘see and treat method’, with any suspected endometriosis lesions being attended to. There are two removal methods available: excision or ablation.
Ablation uses heat or a laser to destroy the endometriosis tissue, but often only touches the surface, leaving deeper lesions behind. This can cause higher rates of reoccurrence and shorter relief from pain and symptoms.
Excision surgery, which is seen as the gold standard removal method, involves cutting the disease out at the root, and is currently the only method available to completely remove endometriosis lesions. However, this requires expert training, and it can be hard to find a surgeon who has the skillset. Because of this, accessing excision surgery in the UK is currently a postcode lottery.
What are the options for pain management?
While many people find relief from excision surgery, this does not cure the disease and for a lot of patients, symptoms will still persist. As such, pain management is critical, both before and after surgery.
Hormonal medications, such as the combined pill, and progestogens, such as an IUD, can provide symptomatic relief from painful periods and ovulation. However, it’s important to note that hormonal medications cannot remove endometriosis so the disease can still progress during such treatments – endometriosis creates its own oestrogen – and symptoms often return once medication is stopped.
Another method to help manage pain is pelvic floor physiotherapy, which helps to assess and work on the pelvic floor muscles. Many people with endometriosis also have a condition called pelvic floor dysfunction, this is when the pelvic floor muscles can either be too tight (overactive) or too loose (underactive). Often, after decades of pain, sufferers find their pelvic floor is overactive, so working through this with a physiotherapist can help ease pain and can also help those who experience painful sex and orgasms.
Some patients find relief from making dietary changes or trying a complementary therapy such as acupuncture, reflexology or maya abdominal massage for adhesion pain, while another complementary therapy often used to help with pain is CBD and THC. Currently in the UK, CBD is legal and there are many options to try including oils, patches and rubs.
The disease can also have a huge impact on sufferers’ mental health and overall wellbeing. Living with chronic pain can be overwhelming and it is common for people with endometriosis to feel their pain is not being believed, or that the extent of it is not being understood by the medical community and family and friends alike. If you need help to navigate this complex journey, reach out to your GP to access help and support. And please remember that your pain is real and that only you know what is happening with your body.
It’s important that you find out what works for you and your pain so, after your diagnosis, request to be referred to your regional endometriosis nurse, who will be able to help you explore your options and put together a long-term treatment plan to meet your needs.
What about a hysterectomy?
A hysterectomy is often incorrectly touted as a cure for endometriosis, but as the disease is defined as tissue outside of the uterus, and because endometriosis creates its own oestrogen, removing it will not cause endometriosis to stop progressing. A hysterectomy is, however, a cure for adenomyosis, a highly-painful uterine disease that is common alongside endometriosis. Hysterectomy surgery can also be helpful for people whose uterus is a source of their pain.
Support and helpful resources for endometriosis
If you need to access support there are many support groups, forums and charities that can help encourage, empower and educate you, including Endometriosis UK and Endometriosis Ireland, universal first ports of call, Endo Black for Black people and people of colour with endometriosis, and Endo Queer for people with endometriosis who are from the LGTBQ+ community. Social media offers a space where you can directly connect with charities, advocates and excision surgeons from around the world, while there are also a wide variety of books on endometriosis which include factual information and personal journeys. We’d recommend Vagina Problems by Lara Parker, Private Parts by Eleanor Thom and Vagina: A Re-education by Lynn Enright.
If you suspect you have endometriosis, please remember you are not alone. Accessing a diagnosis can be an overwhelming and daunting task, but your pain is real, and you deserve care and support. It’s okay to advocate for yourself, ask questions and seek as many second opinions as you need – you are always the decision maker in the doctor-patient relationship and informed consent is key. In the UK, we have set guidelines on diagnosing endometriosis set out by NICE – you can read up on them here. The most important thing to remember is that this is your journey at your pace and that even in the darkest days, there is a whole community of people with endometriosis here for you along every step of the way.