Meanwhile, in my uterus…

“It’s nothing to be concerned about. It’s just your period. Keep taking ibuprofen,” stated my doctor, as he dismissed my frustrations and concerns about having bled profusely for six months.  I nodded numbly in agreement, and left the doctor’s office without another word. Frankly, I didn’t have the energy to argue. I’d been in debilitating pain for a long time and I could barely get out of bed in the mornings. I was crippled by never-ending backache, and felt weak, disorientated and extremely sick. I described these symptoms to my doctor, who was all too keen to dismiss them. He didn’t take my concerns seriously, and he certainly didn’t suggest that I might have a disease called Endometriosis, which affects 10% of the female population (1). That’s 176 million women worldwide.  That’s a large number of women out there, who suffer in silence.

Six months after fourteen similar disastrous doctors’ appointments, I was admitted to hospital where I received an internal ultrasound and laparoscopy, which led to a formal diagnosis of this disease. I felt a mixture of relief and absolute dread. I was relieved that my symptoms weren’t just in my head, which my doctors had convinced me, but this relief was swiftly followed by trepidation, because I knew there was no known cure. Endometriosis is a complex condition, and every case is different. There is also a distinct lack of accessible information regarding how to live with it. It took a far kinder (and infinitely more patient) doctor to explain that this disorder is caused by a woman’s endometrium, which is otherwise known as the tissue that usually lines the inside of the uterus. A person suffering from endometriosis will have this tissue growing outside of the uterus and elsewhere in the body. During the menstrual cycle, this tissue creates an inflammatory response in the body. It forms painful lesions, scars, and nodules. These can cause a variety of life-changing symptoms – moderate to severe pain, migraines, fatigue, pain during sex, heavy bleeding, and many more.  I knew that I’d made alterations to my life because of this disease, and I wondered how many other women had done the same.

My doctor recommended another laparoscopy, which would be aimed at removing the excess tissue. This is a very popular method of easing the symptoms associated with endometriosis. It isn’t a cure, but there is statistical evidence that it can help in the long term. In a recent study of 176 women who had confirmed endometriosis, 67% of these women noted a lessening of their symptoms after surgery (2). After almost a year of being stuck in bed, and using only ibuprofen to deal with the pain, I told my doctor that I would be a willing participant in this operation. It took two weeks for the hospital to arrange a date, and then I was under the surgeon’s knife. The procedure went without a hitch, but I’d be lying if I said the outcome wasn’t painful. I went home two days later with a stomach that rivalled the size and shape of a good-sized watermelon. I was bloated, sore, and I could barely move. I spent five days in bed, before starting to move around again.

Would I recommend the procedure? I absolutely would. I was far more comfortable for a long time afterwards, and was eventually able to return to work. Unsurprisingly, the lesions returned, and I am always in agony during my menstrual cycle. My doctors still haven’t found a solution to my pain either, although they are more willing to prescribe stronger anti-inflammatories (NSAIDS) to try and keep me out of their waiting rooms.  They have recommended hormonal treatment, but as a super sensitive sufferer of anxiety, I declined. It worries me that there isn’t more research going into discovering a cure for this disease, and awareness is fairly rubbish too. As I delve deeper into online communities of the suffering, I’m learning that it can take years to achieve a diagnosis, because the symptoms are simply dismissed. The NHS are also under increasing pressure to see more and more patients within limited timeframes, which results in patients feeling like a number to be ticked off. It almost feels impossible to gain a proper exploration into the symptoms, which was half my battle in the beginning. Awareness has to be key here. There is a still a ridiculous stigma attached to the discussion of the female’s intimate anatomy, but this draconian view needs to be overcome. Doctors must be educated about this debilitating disease that is affecting a huge number of the female population, and be informed about the treatments that are available.  It isn’t good enough to send women home when their symptoms are so severe. Doctors have a duty of care to their patients.

I know it’s going to be a long fight, but I’m in it for the long haul, so wish we luck! If you are a woman who is suffering in silence, please reach out to your doctors, health professionals and friends. It’s not something that should be endured alone, nor should it be brushed beneath the carpet.

https://www.endometriosis-uk.org

  • (1) 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.
  • (2) Morris, KA. Living Well with Endometriosis. William Morrow 2006: 97