Why endometriosis takes an emotional toll

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When I was leaving my office two years ago for a coffee, I was suddenly overwhelmed by pelvic pain. It took everything I could not to double up and scream in the middle of the street. Instead, I took my drink, ran to the bathroom, and sat on the floor until it disappeared. Moments like this were more common, accompanied by other symptoms like back pain and pain after sex. I knew I had to see a doctor.

After discussing my symptoms, the doctor said it sounded like a urinary tract infection and prescribed me a two week course of antibiotics. I left, hoping that soon all the pain and worry would be gone. But as the days went on, I didn’t feel any different and went back to see what was going on. I went on another medical course just in case the previous pills hadn’t worked. This lasted six months.

The day before Christmas Eve, my friend and I went to our favorite sushi place in London for dinner, and when I jumped in the shower to get ready, I noticed my whole body was covered in a rash. I immediately went to the hospital, suspecting it was an allergic reaction, but after many tests I was told I was fine. My frustration grew with the situation. I had never felt this uncomfortable, but I was constantly told that I was fine.

At the beginning of the New Year, I stopped taking the medicine and decided to get to the bottom of it. I asked my doctor if I could be referred to a specialist and a week later, after a brief and rather awkward internal exam, he told me he was sure I had endometriosis, which I had heard about, which I did but admittedly didn’t know much. The doctor calmly explained that in endometriosis, the tissue that lines the uterus begins to grow in other areas, such as your ovaries. This tissue then bleeds, but the blood becomes trapped, causing pain and inflammation. He said it was a long-term condition that could cause complications, including infertility. I left his office and ran to the bathroom to cry, which seemed to be a regular occurrence at this point.

This was followed by two weeks of endless scans and ultrasounds, followed by last-minute surgery on Valentine’s Day to do a laparoscopy and remove the tissue. I came out of the operating room and felt immense pressure in my lower abdomen. It was days before I could even straighten up to go to the bathroom. I had never felt so helpless before.

Although I find comfort in knowing that I am not alone, sadness still overwhelms me.

A year later I can only remember a few small scars on my stomach. I will forever be grateful that I could get the help I needed and that my symptoms were reduced. Unfortunately, there is no cure for endometriosis and I don’t know if I can have children in the future, which is very troubling for me.

Since finding out about my trip, I have connected with other women who have been through the same thing – and although I find comfort in knowing that I am not alone, I am still overwhelmed with sadness. Many of these women have not yet received treatment for their condition because it is so largely unrecognized. In fact, it can take up to 10 years for patients to be diagnosed. I hope that in the future fewer people will have to suffer in silence as they speak out for themselves – and encourage others to do the same. And hopefully with more awareness we will see progress.

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