Posted: 28/03/2024
March is Endometriosis Awareness Month. Sadly, the average diagnosis time for the condition has increased to around eight years and 10 months. It is with that in mind that Emma Cox, CEO of Endometriosis UK, wants to raise awareness of its symptoms, to make more people question ‘could it be endometriosis?’
Endometriosis and other gynaecological conditions have some overlap in their symptoms, making it harder to diagnose. Included in this article are quotes from some brave women within the firm who have come forward to share their experiences.
Endometriosis is a gynaecological condition where cells similar to the ones that line the womb grow in other places. When the womb lining breaks down during the menstrual cycle and leaves the body as a period (when pregnancy does not occur), the endometrial cells also react and bleed. However, unlike a typical period, the blood from the endometriosis does not have anywhere to leave the body, and so can cause pain and form scar tissue.
Despite being a gynaecological condition, endometriosis can spread throughout the body to other organs via the bloodstream and lymphatic system, with reported cases including thoracic endometriosis and bowel endometriosis.
The only way to currently diagnose endometriosis is by laparoscopy under general anaesthetic, and so the removal of endometrial tissue typically occurs at the same time as diagnosis. Although the endometrial tissue can be destroyed or cut out, there is no ‘cure’ to endometriosis. The treatments available may relieve symptoms and, sometimes, help improve fertility. Left untreated, endometriosis can continue to grow, symptoms can impact on a person’s quality of life, and fertility can be negatively impacted.
Although the symptoms can vary, the main ones include:
Jessica comments: “I had suffered with painful periods and nausea, sometimes causing me to be sick, throughout secondary school. My GP simply put me on contraception (I was about 15) and told me that it was because my body needed to get used to having periods, despite the fact that I had been having them for roughly three years.
“I tried various contraceptives but the one that eventually worked for me was the injection, which I had until the end of my first year at university, when I was told that I had been on it for the maximum recommended time. Once the contraception had worn off, my symptoms came back and so I had the implant put in my arm. This initially alleviated all my previous symptoms and stopped me from having periods altogether. During this time, I was told I likely had irritable bowel syndrome, which in hindsight, may just have been an endometriosis symptom.
“After two years of being on the implant, my periods came back along with the symptoms. About six months later, I experienced a stabbing pain during sex that hurt so much I was curled up and unable to move for an hour. This happened again a month later. It was only when I mentioned painful sex to my GP that I felt I had been taken seriously and I was finally referred to a gynaecologist. I was 21 by this point and had been suffering since I was at school.
“I was eventually diagnosed after a laparoscopy just before my 23rd birthday.”
PCOS is typically where a person has an imbalance of hormones, particularly androgens, and the ovaries become enlarged, containing many fluid-filled sacs that surround the eggs. PCOS is diagnosed by the presence of at least two of the following: irregular or infrequent periods indicating irregular ovulation; blood tests or signs showing a high level of ‘male hormones’; and scans showing polycystic ovaries.
The main symptoms include:
Charlotte says: “I had never heard of PCOS from my doctors. It was only once I researched my own symptoms that I could push for a diagnosis. My periods were always irregular, and I could go six months without a period or bleed for three months straight. One morning I had woken up and gained excessive weight and rapidly went up multiple dress sizes. I was told it was because I ate too much. My hair used to be long and thick but now I have bald patches and brittle hair. Following my own research, I had to push for my doctors to refer me to a gynaecologist to run further tests, which meant I was always attending appointments (though the referral was around a two-year wait). They finally diagnosed me with PCOS. The diagnosis had an impact on my mental health whilst I came to terms with it, particularly the impact it may have on my fertility.”
Fibroids are non-cancerous growths that develop in or around the womb. Most women are unaware they have fibroids because they do not have any symptoms.
Those who do have symptoms may experience:
Amelia comments “I don't have endometriosis; I do however have fibroids, which although are not too large, are sitting close to my nerves. I have only had the fibroids since going through the menopause. What this means in practice is that I am constantly in lower back pain and lower abdominal pain for about three weeks of the month (a week before my period, the week of my period and a week after). The only way to really manage this pain is to wear heat patches, which I buy in bulk from Amazon! I see a private gynaecologist and we are currently exploring various options which include a Mirena coil (under general anaesthetic), trying to remove the fibroids (although I have been told they could come back), or a full hysterectomy.”
The conditions listed above are not the only gynaecological conditions and the symptoms listed are not exhaustive. Nonetheless, the symptoms of gynaecological conditions overlap significantly, and it is clear that a proper diagnosis requires further testing. Indeed, some people have more than one condition at once.
Unfortunately, as many of these symptoms also overlap with the symptoms of a regular period, they often get dismissed by medical and health professionals, which is why it is important to reduce the stigma of talking about menstrual health openly, and raise awareness.
The Penningtons Manches Cooper clinical negligence team has successfully represented women who have been adversely affected by a delayed diagnosis of endometriosis. Our specialists know and appreciate the devastating impact this condition can have on a woman’s physical and mental health and how debilitating and life-changing the injuries can be. Early diagnosis and treatment are key to limiting the adverse effects and giving women the best opportunity to lead a normal life.
The names of the women who contributed to this article have been anonymised. This article was co-written by Jade Sisk, trainee solicitor in the personal injury and clinical negligence team.
© 2024 Penningtons Manches Cooper LLP.
All rights reserved.
Website design by Frontmedia / Dynamic Pear
Penningtons Manches Cooper LLP is a limited liability partnership registered in England and Wales with registered number OC311575 and is authorised and regulated by the Solicitors Regulation Authority under number 419867.
Return to news headlines 