Final visits to Chronic Pain Centre - March 10 & 11, 2022

The year with the Chronic Pain Centre is up, but this does not mean I am better by any means. This only means I now have more tools to manage my endometriosis and it is now more stable than it used to be because of the appointments, self-monitored physio, dietary adjustments, sleep adjusting, and psychological adjustments I have made with help from the people here. I am now on my own and left to use these tools to try and cope with this disease.

Anyway, the first appointment was with Dr. Robert and we merely talked. She said she was very pleased with how far I had come and that I looked good. She also had me sit with the nurse and go over pain coping strategies because there will still be down days...

My appointment with the kinesiologist was cancelled and rescheduled because the kine was sick.

And this afternoon (the 11th), I went to the psychologist appointment and we did a closing session - I admitted that I was courageous enough to finally have the conversation about childbearing with the OBGYN and that Topping said what she said about it. I also admitted to the psychologist that there are some days that I have difficulties with my body that I wonder how it would take a physical pregnancy. The psychologist was very impressed that I had the courage to have that conversation and I also said that now that I had the conversation, I had something to tell someone I would eventually enter into a serious relationship with.

The kinesiologist cancelled due to illness, but called for a closing interview later. Among other things, I was reassured that my meds perscriptions and information would be transferred to my local doctors.

Another lupron shot, some clarity, and some grief - December 1, 2021

 I got another Lupron shot today and during the shot, Dr. Topping and I chatted about how all the meds are working and how she is impressed about the weight loss I have experienced. I have lost at least 50 pounds over the course of the pandemic due to changes I have made in my eating and the fact that I am taking my self-monitored physiotherapy so seriously. We talked COVID and I said I was being super careful because I had had reactions, ie: periods, to the shots, and who knows what would happen if I got it with my endo? She also said being heavyset might also affect my health if I got COVID. 

I also asked what would happen if I went off all meds to have a child someday because it's something that's been on my mind for a while and I wanted an answer on it. I was worried I would die. Dr. Topping explained that I probably wouldn't die, but that I would probably have a tough time carrying a kid/having a pregnancy and I would get very sick and it would be very hard to get me back into a healthy state. I admitted that I know, as it took a lot to stabilize me to where I am at now. I admitted I had written articles and a blog about having endo and she enthusiastically said that's good, as it needs to be talked about.

Anyway, I booked my next appointment and left. I cried a bit at the bus stop because I felt a bit hollow at the news, but I didn't cry long. I knew it would be problematic, but to hear it...wow. 

Call with physiotherapist - October 12, 2021

 The physiotherapist called and asked me how the funding for the city athletic stuff is going, but COVID is making that so hard to access. She also suggested I do mall walking and strength exercises in my home via videos she sent me via email. I have goals of wanting to go to entertainment conventions across the border next year if they happen, so I need to work at those...

Call with physiotherapist - September 24, 2021

I had a talk with my physiotherapist over the phone today and as much as they and I wanted to get me into the pool for water activity, COVID is out of control here and I dare not risk it. They will re-send me some things on YouTube I can do around my house while we wait for the crisis to ease. I was also encouraged to continue walking and also do walking around the mall when the weather changes. I am also partaking in a safe away from home activity for my mental health this weekend and they seemed pleased about that. 

Update - September 21, 2021

I went to the clinic for another shot. The needles are as big as a hairbrush and it's stressful to have to take four medications for endometriosis at nearly 34 years old, but they keep me stable and able to function. They make me put on a little weight, but I am able to counter the weight gain with controlling what I eat, drinking water, and going for walks. I could have started swimming and maybe gym work this year if COVID hadn't gone into a fourth wave, but people are being irresponsible with protesting, refusing vaccinations, and refusing to follow health restrictions. I am doing my best to be responsible, stay safe, and keep as sane as I can even though others aren't being safe or responsible. Anyway I got into the appointment reasonably quickly and in the appointment, I mentioned some bleeding and expressed concern that maybe the meds I was on wasn't enough and said maybe they should do something more. Topping, however, said that the bleeding is normal and there's nothing they can do surgically anyway because they aren't even doing surgeries cause of covid...and we just should keep going as we are now.

Thoughts on Amy Schumer revealing she has endometriosis and what she did about it - September 19, 2021

 

I read this on social media today and it reminded me that I am not alone in this battle that I've been dealing with for a long time. Others are also entrenched in this ugly battle that endometriosis is. When I saw her reveal this via the media, I actually went to her Twitter and said, "Thank you for being open about your endometriosis. I have it too and I am currently on four medications for it, all of which stabilize me. I've also written a blog about my journey. It's nice to hear others talk about their journeys because then I don't feel alone."

I actually talked to my mother about this today and she said, "well, that is what you might have to end up doing and it might take the pain away or it might not." 

I'll add more later...

Update - August 17, 2021

I am now on 4 meds and feel like a walking pharmacy.

Topiramate: 1 in the morning, 3 in the evening.

Estradot, 1 patch twice a week.

Lupron: 1 shot every three months

and the IUD, which is inside me.

I've lost weight during this pandemic because of the meds, the food changes, and the self-guided physio I do. Wowzers. I am way below 300. Oh my God.