Let’s Chat with Izzy
By Izzy
From as long as I can remember, having a period always sucked. I felt nauseous, sick and would bleed so heavily from 13-14 years old. Growing up I was told that I would always have cramps, and I always knew that they weren’t cramps but was ignored, by my mother who would just feed me so many vitamins and tell me to simply just suck it up.
As I got older it got worse, I would bleed through anything I wore the first two to three days. I had to always pack spares and change super pads halfway through the day all throughout high school. It wasn’t until I was 18 I went and saw a doctor by myself who just told me that it was “normal” and put me on the pill to regulate my periods. Which worked for about three months until I started bleeding through it. I would get blinding headaches which progressed into migraines, my skin broke out heavily, I would get extremely bloated so they change me to a progesterone only pill and told me that I was just sensitive to oestrogen and to remove myself from my stressful job.
In 2019 I got extremely ill; I had extreme abdominal pain and couldn’t keep any food down and got extreme reflux. I got tested to many times and got told to eat an alkaline diet, because my stomach overproduced stomach acid which was the root of my problems. Looking back now I know that was absolute BS and it was my endometriosis, I then wound up on the Implanon to control my bleeding and I didn’t have much of an issue other than spotting for two or so years.
Cut to 2021, I just moved to work as a farm hand on a cotton farm in a very remote rural area. I started getting this extreme abdominal pain and I got into the doctor. 20 mins later I’m in an ambulance high as a kite on the green whistle because they thought my appendix burst. I was discharged several hours later with “normal results”. Six hours later I was screaming in pain whilst being driven to the emergency room by some friends I had made on the farm. I ended up going back to the GP and getting on the waitlist to see a public gyno which at the time was 6 months waiting time, just before Christmas. Christmas time I was in this extreme pain again and my grandmother took me to the emergency room at 5am because I was screaming in pain. A female doctor asked me a bunch of questions and told me to see a private gyno because she suspected I had endometriosis. I was dumbfounded and started to google it as soon as we got home.
I found a private gyno and got in three weeks after Christmas, January, it was then he looked me dead in the face and went you have textbook endometriosis and I would like to book you in for surgery in march so we can go in and see what extent it is and remove anything we find. In the meantime, I would like to place you on some hormone therapy and some pain medication while we wait. At the time, I didn’t have the funds for the surgery and it was before my wait time for my health insurance. I worked my absolute butt off on the days I could get out of bed, the days I couldn’t I’d call in sick to a boss who didn’t believe me and insisted he had to come check I was actually sick. We spoke for half an hour on my back steps whilst he told me my career would be over if I kept this up. I would go to work sick with a flare up and they all started to see the detriment it caused me. I would show up with heat packs strapped to my stomach, I then invested in a TENS machine, a portable heating pack that was usb rechargeable. I would eat dry sea salt chips and ginger gummy bears for the nausea like it was going out of fashion. There were nights I was up all night with a fever, pain, or vomiting from the pain, hot showers were my comfort. I got denied help by so many doctors as they thought I was trying to just score pills while I was waiting for this life changing surgery.
It was March and it was surgery day. I was so scared they wouldn’t find anything. I remember waking up and asking if they found anything and they said the doctor would come see me. I just said “Do I have endo yes or no?” and the nurse nodded yes. I cried with joy and nodded off on my pain medication drip again. They found extensive stage two endometriosis all over my bladder, my pelvic walls, my left ovary had attached itself to my bowel. It had completely fused my pouch of Douglas and adhered itself to my internal rectum. Some if it was old from when I was a teen and a lot of it was very active and very new attacking my insides. I also got the IUD inserted as a form of birth control and hormone management.
I was good for 10 months, until it started to come back really bad again. The boys at work started to notice my decline, and there were a few more trips to the ED. I went back to my gyno and told him all the symptoms I was experiencing again. I was referred to a pain management specialist and waited until my health insurance would cover another surgery. That took place in January of this year, they found more endometriosis. My right ovary fused itself to my pelvic wall. I had two cysts on my fallopian tube and endo on my muscle holding up my uterus. The surgery didn’t really provide me a lot of relief, and I got the IUD out and went on a new pill that would help slow my endo growth. Note: this has varying levels of success / effectiveness.
March I went to my new GP who validated my suspicion of endo being back all over my bladder, I went and got some scans and did a urine and blood test and she confirmed my suspicions. I also started to experience some horrific ovarian pain during ovulation and it got worse when I started bleeding heavily through the pill erratically.
It is now May, and my options were to fall pregnant or undergo a ketamine infusion to help manage my pain. I opted for the infusion and two weeks post infusion I’m finding my pain to be manageable with heat packs and Panadol. I’m not having to take opioids to manage my pain on a daily basis. I am not nauseated and can be more active taking long and slow walks and even planning a return to the gym shortly for some slow moving and stretching exercises.
Each day is a new unknown chapter to my endometriosis, I’ve taken myself off the pill and trying to manage my hormones on a natural level and see how that helps. My endo is definitely not going anywhere, and no matter what hormone therapy I throw at it, it just makes me feel worse. Living in the area I do definitely has taught me to be more inventive in ways I manage my pain on the go.
For those reading this who think they have endo, or are looking at taking the leap for that surgery, I urge you not to be afraid of this disease. The urge for answers and healing drove me to take the plunge and even though I didn’t get the best results after my second surgery it prompted me for a new treatment. Don’t suffer in silence and remember you are not alone, from one Endo sister to possibly another, voice your feelings and don’t ever give up on yourself.
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