It took 5 years to be diagnosed with endometriosis. I think I may have had the condition from as early on as 15 – I remember crippling over with shooting pains in my pelvis during school and had suffered from stomach problems, allergies, fatigue, ill health and extremely low moods from the start of year 7. At 19 I began getting migraines and my periods suddenly became excruciatingly painful, no matter how many painkillers I took or what kind. I was so desperate to be distracted by the burning and cramping sensations, that I pleaded on several occasions for my then boyfriend to punch me in the stomach (he didn’t, by the way). Sex was near on impossible and every time I attempted it I’d wipe back tears, hide my face and try to pretend I was okay. During my periods, I spent sleepless nights controlled by the intensity of my pain levels, the following day I would be exhausted, suffering from codeine side effects and unable to explain to anyone what was wrong. I felt like my body was a broken machine which was always failing me, yet I had no choice but to carry on dragging it through life. I was embarrassed by the amount of physical and mental 'complaints' I had and worried constantly that it was all in my head or that people would think I was a hypochondriac.
I visited my doctors and the hospital relentlessly, each time being referred to the sexual health clinic and being tested for STIs I didn’t have over and over again. I was once given drugs before they had even received the results, because I was young and they assumed I was infected – I reacted so badly to these tablets that I vomited blood and of course, my tests results came back clear. The final nail in the coffin was being in yet another clinic, my legs up in the air after being swabbed for the 15th time and a male doctor coming in at the request of a nurse, to talk to me about what I was experiencing. He had a look around, shrugged and told me that my pain levels were no more unusual than his back trouble and walked out. It is a frightening, helpless and desperate feeling when you know something is very wrong with you and despite all your begging, no professional seems to know or care as to why.
Finally, my partner came with me to the doctors after I had spoken to a friend with endometriosis and compared symptoms – unfortunately, it seemed the accompaniment of a male to confirm I wasn't just a 'hysterical' woman, was all I needed. At 24 I was referred to a gynecologist and six months later had a laparoscopy. They found small amounts of endometriosis and a cyst on my right ovary which could only be removed if the ovary went with it. If I'm honest, I was disappointed that they didn't take it out, I had no interest in the thing that was causing me pain and resented my body for putting me through the past few years. Endometriosis is a strange disease which can cause extreme pain in women who have little and no pain in women who have lots, as well as the reverse. It seemed that I was lucky with the progression of the disease, just not with the pain levels.
Though recovery time for a laparoscopy is estimated at a week or less, mine was slow and I couldn't get out of bed on my own for the first three days. However, the treatment has been successful and for the next year and a half I had no pain whatsoever and felt more energised than I had in years. I had no intention of getting sick again and was convinced that endometriosis would be different for me - it wouldn't come back. I didn't think about it, talk about it or treat my body any kinder for having the diagnosis and I had no medical advice on treatment going forward or on what my future might look like. No one told me about the rest of the symptoms - that all the illnesses and 'weaknesses' in my body were linked and that there were ways to improve those issues. I walked around pain free for a blissful year and a half, with a niggling fear in the back of my mind, that jumped into action and was quickly pushed back down whenever there was a slight twinge in my abdomen. If I could turn back the clock I'd show my body kindness, compassion, admiration and understanding for all it had gone through and for getting me to 24 despite it. I would have researched the condition, so I at least knew what I was up against and what my options were. But I didn't and I don't regret my journey - I am now here and hoping to make a change to those going through a similar story.
If you are struggling to get diagnosed or are worried you may have endometriosis, please look at my About page for more information on the symptoms. Please do not take shrugs, sexist comments or dismissals as an answer - you have a right to a second opinion and can ask to see a gynecologist. If you don't feel like your doctor respects you or believes you, find another! It took me way too long to leave my GP and when I did, the difference was so remarkable it brought me to tears - being listened to and heard is powerful. For further information on seeking medical advice around diagnosis and treatment, visit Endometriosis UK.