Endometriosis

My Second Surgery for Endometriosis and why I have been away.

                                             “This is going to be an ongoing battle”

This has been hard for me to write. I tried writing this before but I couldn’t bring myself to follow it through. This past year has been incredibly challenging. I’ve had to face hardships and challenges. From dealing with my endometriosis pain, and being rushed to hospital, sleepless nights, having to find a home when I had nowhere to live, having my first proper job, trying to start university and get through it, family issues, a car accident, loss friendships and relationship troubles. I won’t go into detail about those things just because of privacy reasons but I am going to write about my Endometriosis journey in the past year leading up to my second surgery. I am in a place where I can finally write about this. I want this to come from a place of rawness and I want it to be real.

Mid 2017 almost a year after my first surgery all my pain started to come back. It started with painful heavy periods again. Soon followed the sharp, stabbing, and ripping pain all throughout my lower abdomen, pelvis, and it would send pain throughout my back and down my legs. It started to get so bad there was times I couldn’t walk and I would collapse. I ended up being rushed to hospital by the ambulance. My stomach started swelling up like a balloon and would stay like that for days to weeks at a time. It felt so uncomfortable. I could barely eat or wear clothes that were tight around my waist. It was painful to pass urine, or make a bowel movement.

Flash forward a few months later I was seeing my specialist that originally diagnosed me. He suggested I go on Visanne, then Zoelly after that didn’t work. Neither treatments helped and my pain was worsening. My specialist finally said to me “Jasmine I’m happy for you to get a second opinion from another specialist and I can refer you to someone that is really good” because he didn’t know what to do with me anymore or how to treat me. This was incredibly upsetting for me. My quality of life was deteriorating.

Luckily I was going to an information session at a private hospital run by QENDO (Endometriosis Association of Queensland). There was specialists there speaking about Endometriosis, what it was, all the ins and outs of it and how to manage it. I watched and listened to one of the specialists. He was incredibly compassionate about endometriosis, and was very intelligent.

I made an appointment to see him and got my current specialist to refer me to him. We sat down and spoke for 2 hours and he listened to everything I had to say.

We made a plan to manage my endometriosis symptoms and pain. It helped a little but my pain still persisted.

March/April 2018

I went back in and we both agreed it was time for me to have surgery. I booked the surgery straight after the appointment.

I was extremely anxious and sleepless the weeks leading up to the surgery. It was terrifying thinking about going through all of the pain from surgery again and trying to recover. I was terrified that the specialist wasn’t going to find anything but I was afraid of what he was going to find.

July 2018

My surgery was booked for 7 am but I had to be there for admission at 6 am. The morning of my surgery my partner and I woke up at 4am to get to the hospital by 6am.

I was admitted into the hospital at 6 am. I went through with the nurses, answered all of there questions. Did a pregnancy test. Got changed into my hospital gown, stockings, the paper underwear they make you wear, and my hospital robe. I sat out with my partner until they were ready for me to go through.

It was finally time, the nurses called me through. They got me to lay down onto a bed. The anaesthetist came up beside the bed and spoke to me about the surgery, my history, and what medications I was on. I explained to her that I get extremely sick from anaesthetic.

My specialist came over to see how I was feeling and speak to me about the surgery. Than I was wheeled off into theatre. They put a mask on over my face and that was the last thing I remember.

I woke up in the recovery room feeling quite drowsy. I don’t remember much, until I was wheeled into my own room. I had four incisions. One in my belly button, two on either side of my lower abdomen, and one across my pubic bone. I was shocked when I looked down and there was a draining tube in my right abdomen incision, but it was explained to drain the gas they use to pump your stomach with. I also had a catheter in as well. My specialist removed endometriosis from my pouch of douglas, uterus, the front of my bladder. My right ovarian ligament was also adhered to my uterus.

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The 6 weeks of recovery was difficult but my pain was starting to get a lot better, and my periods were a lot lighter.

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A photo of my dog comforting me after coming home from surgery.

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Unfortunately after a few months my pain had started to come back and in full force. My stomach was swelling up to the point it hurt and made me feel nauseated. I now had pain in my ribs, my abdomen, my back, my hips, my tailbone, my pelvis, and I had pain shooting down my legs again. I started collapsing again and couldn’t walk because the pain was too severe. It was painful for me to pass urine and make bowel movements. I was chronically fatigued and barely sleeping. My mental health had massively declined as well, and I was in a very bad mental state from my chronic pain.

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I saw my specialist again, and we both agreed for me to start nerve pain medication, bladder pain medication, to take a combined pill that had dienogest in it, and to start pelvic physiotherapy. Instead of continuing to go down the surgical avenue, which will be a risk and cause damage. My specialist said to me ‘This is going to be an ongoing battle.’ That’s what Endometriosis is an “ongoing battle”, because there is no cure for this disease. We have to trial and error through it, and keep battling on.

Thank you for reading you beautiful souls.

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