Endometriosis is a benign gynaecological conditions where endometrium cells, which are usually found in the womb, are found outside of it. These cells can grow anywhere in the body and have been found in the brain and eyes. Typically, they are found among other gynaecology organs, such as the ovaries, fallopian tubes and uterus. However, more complicated or rarer cases of Endometriosis can occur with growths in or on the bladder and bowel, kidneys, diaphragm and vagina. Endometrial cysts – called Chocolate cysts – can also grow when Endometriosis has occurred in the ovaries.
Like a monthly period (where cells lining the uterus thicken and shed in response to hormonal changes), these Endometriosis growths and deposits react in the same way and become thickened and bleed, causing inflammation and pain where they are located. The inflammation caused can also lead to the development of adhesions, which are fibrous bands that form between tissues and organs binding them together. Adhesions can also grow after surgery.
There is no known agreed cause for Endometriosis, however there are several theories. The first one is retrograde menstruation, a theory that some of the blood and womb lining flows backwards during a period and sticks to other structures. There is also some theories surrounding genetics playing a part, with some studies suggesting that females with Endometriosis have a higher chance of their female children having the disease. Another theory relates to the immune system and Endometriosis being an autoimmune disease. The specialist team I am under are involved with research that suggests something in your immune system switches on “Endometriosis cells”, but the immune theory in general suggests a woman’s body is unable to fight off the Endometriosis. This theory also explains how women with Endometriosis often have reduced immunity and/or other health conditions. The final theory I’ll mention (and there are a few others if you fancy researching) is that of dioxin exposure, which suggests exposure to environmental toxins, such as dioxin, can affect the immune and reproductive system and lead to the development of Endometriosis. Dioxins are found in a lot of everyday products we use.
With regards the symptoms of Endometriosis, there is a long list, but the stereotypical presentation is heavy periods with or without clots and severe pain associated with periods. Other symptoms include but are not limited to;
- pain at any time in your cycle – during ovulation, before a period etc
- pain during or after sexual intercourse, including orgasms
- pain in the back, legs, hips and chest
- prolonged periods
- irregular periods
- loss of old or darker blood before or after a period
- painful bowel movements
- painful urination
- blood present in stool and/or urine
- symptoms of Irritable Bowel Syndrome (IBS) – bloating, constipation, diarrhoea
- feeling faint or fainting during periods
It is important to note that it is possible for women to experience no symptoms at all, whilst others may experience all or a mixture of the above mention symptoms.
Because some of the symptoms overlap with other health conditions (e.g. IBS, urinary tract infections), this can be part of the reason why it can take a long time – average 7 years – for a diagnosis. Endometriosis can only be formally diagnosed through a surgical operation called a laparoscopy. This is a normally a key-hole procedure that allows a laparoscope (small instrument with a camera on the end) to look around your abdomen and pelvic region. Specialists surgeons are able to identify where Endometriosis is located and then remove it – the gold standard is excision surgery, where all of the growth and possibly surrounding area is removed, although it is a common for patients to undergo ablation where they are removed via laser.
When I was diagnosed in 2016, Endometriosis was found on my ovary, fallopian tube and deep into my bladder. I had other patches on my uterus ligaments, uterovesical pouch (area between my bladder and uterus), and adhesions that attached my bowel to my pelvic wall and others pulling on my bladder, uterus and ovaries.
Other diagnostic tools, such as ultrasounds and MRI scans can allow surgeons and consultants to determine if there are any cysts or deep growths, but as per NHS guidelines, a laparoscopy should always be performed to confirm.
Unfortunately, there is no cure for Endometriosis and it can be a tricky disease to keep under control. Treatment techniques are limited to surgical, hormonal and pain relief.
Common surgical methods can include laparscopies to remove growths, an oophrectomy to remove problematic ovaries and hysterectomy to remove the reproductive organs and uterus. There is some evidence to suggest that repeated laparoscopies can lead to further scar tissues development making symptoms worse, but each patient is individual. It is important to also note that even after surgical removal of the uterus and ovaries, symptoms and growths can still persist. I have undergone 3 laparoscopies for my Endometriosis – my second one identifying that my Endometriosis had returned quickly in the space of a year, and my third one suggesting I had Adenomyosis as well.
Hormonal treatment generally focusses on the use of hormones to mimic pregnancy or menopause, essentially preventing monthly periods and switching off other hormones (e.g. oestrogen) that is thought to feed Endometriosis growth. Typical examples are the Mini-Pill (progesterone only) or the combined pill (progesterone and oestrogen),Mirena coil and GnRH analogues. However, these drugs often come with side effects that are not always tolerable, and are not always appropriate for everyone. I am now unable to take any form of hormones due to something in mine and my mums medical history, but have recently come out of being in the medical menopause.
Pain relief for Endometriosis can vary from person to person, and can be complimented alongside other management techniques such as acupuncture, dietary changes and TENS machine use. Personally, I have struggled with pain relieving medication due to side effects, but have found relief through TENs machine and changing my diet. I also have an appointment next month with the pain clinic, a specific team which is often recommended for Endometriosis patients due to the chronic nature of their pain.
The prognosis of Endometriosis can vary from each individual, but it is commonly known that patients with Endometriosis can suffer with fertility problems. This is thought to be related to the location of Endometriosis growths, adhesions that sometimes distort anatomy and inflammation. Inflammation possibly has an effect on egg quality, as well as alter the chemical environment which an egg passes through. Having said this, fertility problems are not guaranteed with a diagnosis of Endometriosis and is very much dependent on the stage and progression of your disease. It is known that ladies with severe Endometriosis have no problems falling pregnant, whilst those with milder forms of the disease can struggle – it really is very different to each person. Whilst it can be very upsetting and worrying to have this constant concern regarding fertility floating around in your head, I personally try to manage this by not worrying about it until it needs to be worried about.
I have found living with Endometriosis to be very tough – the constant cycle of pain, bleeding an other distressing symptoms have severely impacted on my ability to work, socialise and do certain physical tasks. This has also impacted on my mood at times, making me feel isolated as the stigma surrounding periods and “period problems” has created a limited understanding in the outside community. However, I have found a lot of support through the online community – something that I hope this gives back to.
Further information can be found at Endometriosis UK – the UK’s leading charity for women with Endometriosis.