The KENSA Health Guide to Endometriosis
Do you have period pains so intense and long-lasting, you can not participate in your normal life? Does it hurt when you wee or poo or have sex? Have you had trouble getting or staying pregnant?
These are the most common symptoms of a very common, and poorly understood, condition called endometriosis.
Endometriosis is a complex topic, so if you want to skip to the good part, here’s a brief outline with links:
What is endometriosis?
Endometriosis is common - as common as diabetes - and it affects 10% of women of reproductive age. However, for years it’s been known as a “hidden disease” with a huge gap in knowledge, research, diagnosis and support. If you have heard of it (or even think you might have it) you will likely have heard that it has something to do with extreme period pain. But you might not know exactly what it is, how it impacts your body, all the additional symptoms, and most importantly why it hurts so much.
Endometriosis is a condition where endometrial cells normally found lining your uterus (womb) are also present in other parts of your body. This is usually in body parts around your uterus, like the ovaries, the bladder and the rectum, but they can be found as far away as the lungs in extreme cases.
The endometrial cells grow outside of the uterus, where they’re supposed to be, and end up clinging to organs, ligaments and muscles elsewhere, which is “fine” (it’s not fine) until period hormones hit. Once those hormones get released, all the endometrial cells everywhere fill with blood, swell up and, if you don’t fall pregnant, release themselves.
Now, when the endometrial cells do this where they’re supposed to within the uterus, you get an ordinary period.
With endometriosis, however, these cells fill up and release themselves from the not-uterus parts of your body. If these body parts are connected to the vagina the way fallopian tubes and ovaries are, the blood flows out like a period, which explains the heavy flow. However, if the endometrial cells have attached to body parts that are not part of the reproductive system, the blood has nowhere to go. So it sits in the body, creating inflammation and extreme pain. On top of that, the cells themselves can cause damage and scarring, which is why people with endometriosis can have debilitating pain even when they aren’t on their periods.
The most likely places for this tissue to form, as alluded to above, is the ovaries and fallopian tubes. They clog up the system and can lead to pain during sex and fertility problems, though contrary to popular thought, it is still possible to fall pregnant even though you have endometriosis. However, it might be more difficult or require some medical help.
In addition to the reproductive system, endometrial cells often cling to the bladder and bowels and the muscles and ligaments down there, which is why endometriosis can cause pain when you use the toilet.
When endometriosis affects the ovaries, something called an endometrioma can form. This is a sack-like cyst containing endometrial tissue and is located on or in the ovaries. They are sometimes referred to as “chocolate” cysts because of the appearance of old menstrual tissue and blood that they contain. They can potentially cause problems with fertility because of their location on the ovary if they interfere with egg production or transport. An endometrioma can also carry the risk of rupture causing sudden severe pain (usually in the low abdomen on the side where the cyst is). Other possible symptoms alongside this include vomiting, dizziness, breathlessness and fever. If you think you have a ruptured cyst you must seek urgent medical attention.
Endometriosis is not contagious, and you cannot pass it on to anyone else. And while it is a condition that involves abnormal cell growth, it is not a cancer. The abnormal tissue growth from endometriosis is benign and is not cancerous. They are just not where they are supposed to be in your body. It is important to note that endometrial cancer is a thing and presents with abnormal vaginal bleeding, but is extremely rare in women before the age of the menopause. This cancer isn’t thought to be caused by endometriosis and is seen in less than 1% of women with endometriosis.
Unfortunately there is no cure for Endometriosis, but there are a lot of treatments available and lifestyle modifications that can help (see our section on treatment for more on this). Because endometriosis is connected to hormones and women’s menstruation cycles, it often disappears after the menopause. Unfortunately, because the condition is so poorly understood both by health care professionals and the public at large, many women feel like waiting it out and relying on menopause is the only real option they have. But, this is starting to change and organisations like Endometriosis UK are trying to promote positive action to support women with endometriosis. You only have to look at the huge number of endo / endometriosis profiles on Instagram to see that this is starting. With a diagnosis and support, there is a lot you can do to manage this chronic condition.
What are the symptoms of endometriosis?
Endometriosis affects everyone differently, which is part of the reason it is so misunderstood and takes so long to get diagnosed. Some women have large areas of endometriosis with few symptoms, whilst others have much smaller areas but are significantly affected. Some women can also have symptoms which are less obvious.
For many women, endometriosis results in extremely painful and heavy periods. This can start from their very first period, and often periods can be so painful that women can’t do their normal, daily activities even with pain medication.
In other words, if adverts for sanitary products seem laughably unrealistic because the women are able to function at even a basic level, you might have endometriosis.
So while extreme pelvic pain which is worse just before and during your period is the most well-known symptom, it isn’t the only symptom women should look out for. In fact, many women miss getting an endometriosis diagnosis because they suffer from one (or some) of the less well-known symptoms.
Other symptoms of endometriosis include:
Pain during sex
Difficulty getting pregnant
Very heavy periods (bleeding through sanitary products)
Shooting pains down back and legs
Stomach bloating (sometimes called endo-belly)
Headaches and migraines
But that’s not all. It is important to remember that endometriosis can occur all around the body. If there are areas of endometriosis in the bowel and bladder, you may also experience pain or see blood when you pass urine or a bowel movement. This can be disturbing to discover and should be discussed with your doctor to check that it is not caused by something else.
If misery loves company, so does Endometriosis. Up to 20% of women with endometriosis have concurrent chronic pain conditions, including irritable bowel syndrome, interstitial cystitis/painful bladder syndrome, fibromyalgia, and migraines [.
It is important to see a doctor as soon as possible if you have any blood when you pass urine or with a bowel movement, or if you are experiencing extreme pain. even if it isn’t endometriosis, these are usually a sign something isn’t right.
The key thing is, if you are experiencing any of these symptoms, you should book in to speak with your GP right away. Women often dismiss pain, especially when it comes to period pain. There is a long-held belief that is a natural pain that women can overcome, or at least should valiantly suffer through. However, you should not have to endure debilitating symptoms every month. You do not need to live with painful periods and you should definitely not ignore what they could mean for your health.
If you see a doctor and they dismiss your pain or suggest that you just wait and see, ask to see another doctor. While a diagnosis can take time, you should feel supported and believed by your GP. They should be fighting with you to help you get to the bottom of the source of your pain.
It is important to know that every GP has had a different education, has done different research, remembers different things and just generally has different areas of interest. And remember, endometriosis is a very underfunded and under researched disease that a lot of doctors might have had little to no training on. Because of this, the first (or fifth) GP you see might not actually be the best person to recognise and diagnose endometriosis. There is nothing wrong with continuing to seek out other opinions if you feel like you’re not being heard.
MYTH BUSTED: Endometriosis hits women in their 30’s and 40s.
Most women aren’t diagnosed until they are in their 30s and 40s, but endometriosis can strike as soon as you start menstruating. A lot of young women in their teens and 20s go undiagnosed for years because they don’t understand the disease and because we as a society tend to be dismissive of period pain in young women. Young women may also be embarrassed to talk about their periods with doctors or even with each other, so they might not even realise their periods are abnormal. And they may not yet have the confidence to push for a diagnosis, leading to a delay in treatment.
However, extreme period pain, fatigue and very heavy bleeding should not be ignored, and young women should find a sympathetic doctor they can discuss their symptoms with.
How is endometriosis diagnosed?
Even though endometriosis affects 1 in 10 women worldwide, it is still very hard to get a diagnosis. It can regularly take 7 to 12 years (years!) before they are finally diagnosed.
You know that a lot of this can be explained by a lack of understanding and information for all parties involved. As a result, women may downplay their symptoms or not go to the GP at all. But annoyingly, it’s not just down to societal expectations around reproductive pain. Endometriosis has symptoms that are similar or identical to loads of other conditions, and your GP will probably want to rule them out before going down the endometriosis route. And this obviously takes some time.
Once you do finally see a GP and explain your symptoms, the GP will likely arrange for blood tests and an ultrasound scan to investigate the cause of your symptoms. While in some cases an ultrasound scan can start to spot signs of endometriosis, it isn’t conclusive for a diagnosis in the UK. However, scans and blood tests can be used to rule out the other potential causes for your symptoms. It is important they rule out the more easily diagnosed explanations because, unfortunately, there is no non-invasive test or scan to diagnose endometriosis.
The only way they can know for sure is for the doctor to book you in for a small operation called a laparoscopy. This is done by a gynaecologist in the hospital. During the procedure, a narrow tube with an eyepiece is put inside your abdomen through a small cut. The doctor may take a small sample of tissue (biopsy) to send to the laboratory for examination under a microscope.
How is endometriosis treated?
Although we can’t call the information above the good news, this bit is not great either. Unfortunately for the millions of women around the world who suffer daily from endometriosis, there is no cure for the disease.
It is a chronic condition, and the treatment is more about working with your body and your lifestyle to try to reduce the pain and its impact of the condition on your life.
There are therapies, treatments and drugs that can help to reduce the pain, can slow down the growth of new lesions, or can help if you are trying to get pregnant. We’ll run through a few options here, but the best thing is to make an appointment with your doctor to discuss the various options available to you and help you decide which is best.
Some of the most common (and a few uncommon) approaches to coping with endometriosis:
Probably the most important and the easiest thing for your GP to tackle. The first port of call will be over-the-counter pain medications such as non-steroidal anti-inflammatory drugs (NSAIDs) and paracetamol. NSAIDs are the family of painkillers that includes ibuprofen. They work by not only reducing the pain but they reduce the effects of prostaglandins which are the main thing causing muscle cramping and inflammation that occurs during your period. If you are unable to take these or these are not strong enough, your doctor may prescribe other tablets such as mefenamic acid or even in some cases where there is an element of chronic nerve pain consider neuromodulator medications such as amitriptyline.
One option women sometimes consider is codeine based medication. Although this may be helpful short term pain relief it is not generally recommended for chronic women’s health conditions such as endometriosis due to it having the side effect of constipation which is likely to worsen any pelvic pain, alongside the risks of dependency and to affect hormone levels with frequent use. With any use of regular pain medication, you should be very careful around the frequency and amount of use and should follow guidance from your pharmacist or doctor.
Hormonal treatments reduce or even prevent oestrogen production and prevent your menstrual cycle. This will reduce or stop the natural thinning and breakdown of endometrial tissue that happens every month when you have your period. Less tissue and fewer lesions should hopefully mean less pain. There are a few different options for hormonal therapies including the combined oral contraceptive pill, the progesterone only pill, the progesterone injection, the progesterone implant or the progesterone based coil / IUS (discussed further below). More information about these can be found in the NICE guidance patient decision aid Patient decision aid - Hormone treatment for endometriosis symptoms – what are my options? More specialist hormone treatments including gonadotropin-releasing hormone (GnRH) receptor agonists and antagonists, testosterone derivatives, and aromatase inhibitors may be considered in conjunction with your gynaecologist. Some hormonal treatment options can be taken for a long time, whereas others may need to be taken with breaks every few months. Again, you should work closely with your doctor to figure out what is right for you.
The Coil or Intrauterine system (IUS)
The Mirena coil is a small plastic T-shaped intrauterine device that is most commonly used as a progesterone based contraceptive. One of the ways it prevents pregnancy is to thin the lining of the womb, resulting in either light or no periods. This thinning of the womb lining and reduction if not stopping of periods can help treat women with endometriosis. While this is a promising option, it can be invasive and painful to have it inserted and some women report pain and cramping when it is put in. So do speak with your doctor about pain relief. Also it is worth noting, that unfortunately due to the pandemic’s impact on non-critical procedures, there is a long waiting list for getting a coil fitted.
Areas of endometriosis can be removed with surgery. As with hormone treatments, the idea is that fewer areas of tissue around should result in less pain. Normally this will be a laparoscopy (keyhole surgery). When endometriosis is severe, a laparotomy (open surgery) may be needed. If your endometriosis is impacting your fertility, surgery can help improve your chance of pregnancy.
This is an option for those who do not want children in the future. It is a larger operation where the womb (and sometimes the ovaries) is removed. However, there is a large amount of debate about the success of a hysterectomy. It is an extremely invasive procedure with significant impact on your body, including potentially triggering early menopause, which can have it’s own health risks. It also isn’t a conclusive “cure” with many women reporting that Endometriosis comes back even after the hysterectomy. We suggest speaking with an Endometriosis specialist before going down this route and discussing all other options first. There is a trend, especially online, in seeing a Hysterectomy as a “simple” solution for endometriosis, but again this is largely down to a lack of understanding about the condition and an overall lack of understanding about women’s health and the impact of the procedure.
Your GP or gynaecologist will be able to guide and support you throughout the course of the condition. There are also specialist therapists that help people work through the mental aspect of living with chronic pain, and they may be of some help.
Both exercise and dietary changes can be extremely beneficial in the management and prevention of worsening endometriosis and works via several mechanisms. Endometriosis is an oestrogen driven condition and as oestrogen is produced not only by the ovaries but also by fat cells it is beneficial to keep your weight within a healthy range (ideally to keep your BMI below 25). Exercise helps by increasing circulation and reducing prostaglandins released during periods. This in turn reduces the prostaglandins effects of inflammation and contraction of the womb which causes muscle cramps and pain. Diet can help via a couple of possible routes - potentially through increasing fibre and through phytonutrients with anti-inflammatory effects as well as through the benefits of phytoestrogens such as soya based diets which are thought to help balance oestrogen and even reduce excess levels of oestrogens. The Mediterranean diet has been shown to be beneficial as well as plant based diets.
We understand that living with endometriosis (whether officially diagnosed or suspected) is extremely difficult and all the most frustrating due to the lack of support and resources around the disease. We have created a number of additional resources we hope you will find helpful. And remember you are not alone millions of women around the world feel your pain and are pushing back to try to create real change in this space.
References and research
Rogers PA, D'Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.
Berkley KJ, Stratton P. Mechanisms: lessons from translational studies of endometriosis. In: Giamberardino MA, editor. Visceral Pain: Clinical, Pathophysiological and Therapeutic Aspects. Oxford: Oxford University Press; 2009. pp. 39–50. [Google Scholar] [Ref list]