Christie’s story

I suspect I have had endometriosis since the onset of menstruation at 14. My pain was always debilitating. I went through multiple Drs looking for an answer in my teenage years.After many investigative procedures (but no lap) I was diagnosed with irritable bowel syndrome. That didn’t help me, at all. At 26 I got pregnant for the first time. It was a misdiagnosed ectopic pregnancy (I had an intrauterine pregnancy, so the ectopic pregnancy was over looked) which ruptured. At which time it was surgically removed. The doctor told me that the endometriosis was extensive and my remaining fallopian tube was entirely covered in an adhesion and was completely non functional. If I wanted to have children I would need to do IVF. When my husband and I were ready we did IVF and had our first son. At the six week checkup I asked the doctor (the same doctor who performed the ectopic surgery) for birth control. He laughed at me and told me I did not need birth control as natural conception was not possible. When my son was six months old, I was pregnant with my second son! At his six week check I asked (my new Doctor lol) for contraception and given my endo we decided a Mirena IUD was my best option. It never really seemed to help with pain though as I still got regular periods and they were just as heavy and painful. Until my second son was two, then my period stopped. I went for an ultrasound only to discover I was pregnant with identical twins! After the twins were born I decided I would just take the pill continuously (to avoid periods, and therefore pain) as the Mirena had also failed. I couldn’t risk any more pregnancies with four babies in three years! The continuous pill worked well for a few years but then I started to bleed every six weeks even with the pill. I consulted multiple gynecologists but their recommendation was the Mirena and they would not give me a hysterectomy as it was considered an unnecessary risk. My pain was not a factor even though I was bed ridden for a week a month and the pain was so bad I couldn’t urinate. One gynae actually told me surgical discovery was not indicated in my case as he did not feel I had endometriosis. My pain continued to increase until I was calling an ambulance and going to hospital every month. I found a hernia which turned out to be inguinal endometriosis. The endometriosis was so infiltrative that it had grown through my abdomen into my groin. I finally found a female gynecologist who agreed to give me a hysterectomy. Before surgery I tried to warn her that it was extensive, ultrasounds in hospital had revealed “kissing ovaries” (actually the medical term!) where hematomas had joined my ovaries together. I stated I would like to try keep one ovary so I didn’t go into surgical menopause. She advised me her plan was to keep both ovaries. Then she said the procedure was to take approximately 45 minutes. When I awoke in recovery she told me that that herself, a colorectal surgeon and a urologist had operated on me for 8 hours. They could not find my ovaries due to the endo. It was what is referred to as a frozen pelvis. All my organs were covered and frozen or stuck down by my adhesions. My kidneys, bladder and bowel were the worst affected. I had bilateral stents put in to keep my kidneys functioning properly. The surgeons were unable to remove all the endometriosis as it was so extensive. They had to remove my ovaries fallopian tube and uterus and I immediately went into surgical menopause. The removal of adhesions from my organs resulted in unavoidable nerve damage. I now have daily chronic pain, from the remaining endo and the nerve damage. I can’t feel well when I need to urinate and so I have to strain to evacuate my bladder which results in pain. Bowel movements cause excruciating pain. I’m waiting for an appointment with a pain clinic, I’ve been waiting six months. End of story, endo sucks. xx  

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