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Endometriosis Awareness Month: the real stories behind the diagnosis

Posted: 31/03/2021

Endometriosis often affects women differently. The symptoms can vary, and may also be suggestive of other conditions; the only definitive way to diagnose the condition is by a laparoscopy. All of this means obtaining the diagnosis can be a difficult and lengthy process. Below, two brave women have shared their endometriosis stories and whilst the treatment that has helped them has been wide-ranging, one thing they do both have in common is their memory of meeting the consultant who believed them and gave them their diagnosis.

Sarah – “It all started when I was 14. My menstrual cycle was very painful and the bleeding was so severe it stopped me going out and to school. I used to be crippled with pain in my stomach; even when I was not going through my monthly cycle the pain was still there and there was random bleeding.

In the first year, I had 16 hospital admissions. Every time it was the same process. I was admitted, sent for ultrasounds, x-rays, blood tests and then when they could find nothing, I was given pain relief and discharged. At one point, I was referred to a consultant at a hospital in London to discuss the chronic pain. They told me that the pain was all in my head and it was because I suffered trauma in my life.

Eventually I saw a specialist in gynaecology for younger women. Immediately he said I needed to have a laparoscopy to find out what was going on. I felt so relieved that someone actually believed me. I then underwent the laparoscopy when I was 16 and was diagnosed with endometriosis and polycystic ovaries. I am so grateful to this consultant who stuck by me. He did everything in his power to help me and improve my symptoms.

After being diagnosed, I underwent a further five laparoscopies, during which the doctors had to remove some of my womb and fibroids that were found. The endometriosis then spread and attached my ovary to my pelvis, so I had to have one of my ovaries removed. I then received Zoladex injections for two to three years. These were a monthly injection, administered by my GP, which kept my body in pre-menstrual menopause. At the age of 23, I decided to undergo a full hysterectomy. It was one of the hardest decisions that I have made, but not a decision I regret as it was worth it for my quality of life. I believe I am lucky, as despite there being a risk that the endometriosis would still grow inside my body, after my hysterectomy endometriosis no longer affects my life.

I will always be so grateful to the consultant who believed me, and subsequently gave me my diagnosis and treatment options. It is now seven years after my hysterectomy and I feel like I am a new person.”

Megan –“I was first properly diagnosed at the age of 24, after a laparoscopy. For seven years prior to that, I experienced irregular bleeding, pain in my bowel and bladder and pain during sex. Despite reporting my symptoms, it took all those years until I was referred for a laparoscopy. During this time, there were a number of occasions where I was told it was all in my head.

The standout moment for me was meeting my consultant, who actually believed the daily pain I was in and took it seriously.

After I was diagnosed, I was initially trialled on different contraceptive pills back to back, the coil twice and Zoladex injections for a year. I also underwent 11 operations to remove the endometriosis from my bowel, bladder and womb.

I have since been lucky enough to have three beautiful children. I was discharged from my consultant a year ago as after baby number three, my endometriosis has pretty much gone and no longer affects me.”

The clinical negligence team at Penningtons Manches Cooper has acted on behalf of clients in cases where there has been a delay in receiving a diagnosis of endometriosis despite a laparoscopy taking place. The failure to diagnose endometriosis and delays in referral to a specialist by GPs have resulted in clients being left without appropriate treatment until a diagnosis is provided, often many years later, and in some cases this has impacted on their fertility.

Once diagnosed, there are a number of treatment options that can be tried which should hopefully improve the symptoms for those suffering with endometriosis, so that - as with Sarah and Megan - the condition no longer overshadows their lives.

The names of the women who contributed to this article have been anonymised.

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