Many assume that endometriosis is no more than a bad period, but it is the second most common gynaecological condition in the UK and can cause debilitating – and in some cases life changing – symptoms to the body.
At Bladder and Bowel Community we spoke to three women who have been affected with severe bladder and bowel issues as a result of having endometriosis. First let’s revisit what it is and how the condition affects the body.
What is endometriosis?
Endometriosis is a condition where cells similar to the lining of the womb are found elsewhere in the body. Each month, these cells act in the same way as the womb lining, building up, breaking down and bleeding but unlike the womb lining these cells cannot be shed so stay in the body, causing pain. These cells can be found anywhere in the body but commonly attach themselves to the bladder and bowel causing bladder and bowel pain, urinary retention, rectal bleeding.
Around 1.5 million women and those assigned female at birth have been diagnosed with endometriosis, which equates to 1 in 10 women of reproductive age are suffering with this condition. On average it can take eight years to be diagnosed*.
Common symptoms include
“It took five years for me to get a diagnosis”
Karina Wilson, 27 from Lowestoft suffered from horrific debilitating pain that often caused her to pass out from pain ever since she first started her periods aged 11 years old.
“I started my periods when I was 11 years old and it took them five years to diagnose me with endometriosis. I was then diagnosed with adenomyosis four years later and between my diagnoses, I was told I had ME/CFS (Chronic Fatigue Syndrome), then two years later I was then diagnosed with fibromyalgia. My endometriosis has gotten so bad that it is now affecting my bladder and has now resulted in me needing to self catheterise.
“Right from when I first started my periods they were horrifically painful and debilitating. I would pass out from pain. I missed so much school and my symptoms were getting worse. After being pushed from doctor to doctor, I was referred to see a Gynaecologist where she did a laparoscopy and it was found that I had severe endometriosis. This then led to more tests and surgeries which then resulted in me getting a diagnosis for adenomyosis.
“I have had so many different treatments, medications, procedures and surgeries over the years but I have just finished a round of Zoladex injections, these are commonly known as the chemical menopause. I am having various tests/procedures to look more into my bladder and bowel as they’re causing me quite a few problems. I have to take morphine as the pain is so intense that I struggle to get out of bed most days.
“I have only started using catheters in the last 18 months and I felt completely overwhelmed with the thought of having to adjust to this new way of life and I knew it was going to be a challenge, but my continence nurse helped me every step of the way and taught me how to self catheterise. I also speak to a few women with endometriosis who have to use them and they have helped/supported me and using Facebook and Instagram have been really helpful.”
“Endometriosis causes me constant bladder infections”
Becky Clayton, 29 from Sheffield is someone else who spent years trying to get a diagnosis despite having family history of endometriosis.
“I started my periods at age nine and had awful periods from then until I was 18, when I finally got a diagnosis of endometriosis, despite a big family history of the condition. I had a laparoscopy to diagnose my condition at 18 but once I had my children at age 24 and 27, I started to experience symptoms with my bladder, where my bladder would retain urine due to the growth of endometriosis. I ended up with 18 bladder infections last year and I was taught to self catheterise in order to remove urine from my bladder.
“I’ve had so many treatments including the coil, chemical menopause and now I’m waiting for a hysterectomy.”
“I got told the pain was normal and that it was just something I had to endure”
Abbie Stapleton, 25 from St Neots in Cambridgeshire suffered with crippling periods, bladder and general pelvic pain before being diagnosed with endometriosis and Fowler’s Syndrome. Abbie currently uses intermittent catheter to manage her bladder issues.
“I have suffered with extremely painful periods since the age of 15, however whenever I sought medical help for the pain, I was constantly told the pain was ‘normal’ and that it was ‘just something as a woman I had to endure’.
“It wasn’t until my pelvic pain became chronic, as well as dealing with pain during sex, pain when passing urine, pain opening my bowels and severe fatigue that endometriosis started being investigated. By September 2020, my symptoms had got so bad that I was mostly housebound and required an admission to hospital to work out why I was having such severe kidney pain. I went down for an ultrasound where I had to fill my bladder up to capacity, which resulted in a lot of pain and was the first time I went into full urinary retention – I could not empty my bladder.
“I suffered with extremely painful and heavy periods for 10 years pre-diagnosis which led me to missing school, university and work. I wouldn’t be able to leave my bed for at least three days, despite being on strong pain relief and the pain would be so severe that I would faint or vomit multiple times during my period. Over the years I started to develop other symptoms like ovulation pain, pain during sex, pain passing urine, pain before, during and after opening my bowels, IBS like symptoms (constipation and diarrhoea), back pain, leg pain, severe fatigue, nausea, chronic pelvic pain and depression.
“I was referred to a general gynaecologist, who unfortunately immediately dismissed me. She told me that I was “too young to have severe Endometriosis” and “because I was on the pill and my symptoms weren’t cyclical, I probably just had IBS”. However I pushed for an MRI scan to see if there was anything going on and the results came back in May 2019 saying I had severe Endometriosis, adhering my uterus, bowel and left ovary together, as well as recto-vaginal endometriosis. I went on to see an endometriosis specialist after this, for further intervention.
“Since then, I have had endometriosis excision surgery, which was incredible and has helped a lot with my endometriosis pain. I am also under the pelvic floor physiotherapy team and pain team who offer me various medications and treatments to help with the ongoing chronic pelvic pain I have.”
For more information on endometriosis, you can find more information on our website about the symptoms and treatments available. We have also published other patient stories, should you wish to read in more depth about these topics and how others have reached a diagnosis.
You may also wish to visit Endometriosis UK, the leading UK charity helping those affected by the condition.