I got a new OBGYN named Dr. Cluett and he recommended I stay on my Lupron shot and other regular meds after trying to get me on a new med, but failing cause my disability insurance wouldn't cover it (I'd be paying A LOT for the new med, in other words.)
Anyway, after I got my thyroid out on September 9, 2024, I started having a lot of pain and painful bleeding and finally decided to make an appointment to see if my thyroid coming out had affected anything gynecologically. It hadn't, thankfully.
I'm being referred to someone in Lethbridge, thank God, but until I get an appointment, Dr. Wagner from Calgary will continue to help me by phone appointments and renewing my perscriptions...
No leukocytes since the scare last year, just so y'all. Thank God.
I had surgery for endometriosis today: a D&C, a hysteroscopy, and an IUD replacement. It was done at South Health Campus by Dr. Wagner. It was day surgery that is intended to help me with my endometriosis. It's something I've lived with for a while and this surgery will help me continue to live with it as best I can.
The surgery lasted about an hour and I ended up having five naps throughout the day after. Follow-up is set to be six weeks after the fact.
December 8, 2022
My first appointment at the Women's Health Centre at the South Campus in Calgary went well. I'm so grateful I got in on a cancellation and was able to meet Dr. Wagner. She went over my health notes and we talked about my pain, my lupron, my Topiramate, and my health journal. She decided that I should go off the Lupron for a few months to see if the IUD could hold me together by itself.
March 13, 2023
Today's appointment involved me discussing my medical concerns, as I had several: scheduling IUD replacement surgery because the IUD is only supposed to be in a body for 5 years and 2014 is the year is supposed to be the replacement year because it was inserted in 2019 and a D&C/hysteroscopy might help with pain; my urine tests in late 2023 that tested positive for leukocytes; and my recent low blood pressure.
Dr. Wagner addressed all my concerns. She said the leukocytes weren't a concern as there were no other tests that indicated problems, nor was the low blood pressure a problem. However, she did note that a surgery to replace the IUD and check for pain/bleeding causes would be a good idea and so she said to schedule a date with her receptionist. She also encouraged me to start increasing my physical activity.
BYU Idaho Fall Devotional Series - Part of Degree Coursework
Please respond to the following prompt from Sister Saurey:
How do you cope with feelings of not being enough?
As a Neurodivergent individual who also has endometriosis, I struggle with feelings of not being enough every day and that means I have to literally pray for the Spirit to be with me every day that I can be reminded of my value.
Being Neurodivergent means that I see and interpret both the world and others very differently than Neurotypical individuals do and quite often, I often misinterpret other people, act inappropriately without meaning to, or interpret things in unexpected ways. Or I am slower to react, slower to learn, slower to understand, or slower to interpret than others and there are those who don't like that sort of thing. I am quite often told that my way of functioning is not enough, I am excluded because of how I am, or I am told that my behaviors are choices and that I can choose to do better.
Being Neurodivergent certainly isn't a choice, as I didn't choose to be this way and I really don't like it when people accuse me of choosing my behaviors or the way I interpret/do things. I have written personal essays for the Church's website and for Star Trek websites about what life has been like for me and my life has included things like my family's doctor telling my mother that my three-year old self should be put in a group home because I was too different to be put in the real world; my father deciding and telling my mother and brother that I was unworthy of love because of my disability to the point where my brother believes it to this day; me going to six different elementary schools because educators thought I was too stupid to learn anything. I could go on and on about the personal, social, and academic struggles I have faced throughout life because of my Neurodivergency, but I will just summarize it by saying that I have worked extremely hard to overcome the low expectations people placed upon me to be where I am at today and I have also relied on the graces Christ continually offers me. It is because of the Atonement of Christ that I can give myself permission to look beyond what is flawed about me and focus on what is awesome about me and also find joy in my accomplishments.
In terms of the endometriosis, I was only diagnosed with that in 2017 and it shattered the expectations I personally had about motherhood. I had the fantasies that all LDS girls had when they were youths: I was going to marry in the temple when I was a young adult to a return missionary and have a lot of kids. Well, none of those things have come to pass yet and I have gradually come to learn that such expectations are rather shallow; a man who is active in his holy use of the Priesthood and is temple worthy is a good candidate for a husband whether or not he's served a mission and the way I become a mother doesn't matter. The way I become a grandmother doesn't matter. It sure mattered to me back when I was first diagnosed because I felt so broken and unholy. I felt as if I had failed in what a woman was supposed to do and it took a visit to the Calgary Temple (which is three hours from where I live) and a very deep conversation with Laurel Day during a break at a Time Out For Women event to help me get out of that 'broken mindset.' I still grieve over it and I still very much grieve over the endometriosis, especially having the feeling of knowing what the outcome of my struggle with it is probably going to result in. However, I've gotten to the point where I can openly talk about it and even write about it now: I've written a blog about my journey with it, I've written an article for the Church of Jesus Christ website about it, and I've written an article for a Star Trek website about it. I also don't see myself as a piece of broken, unfixable junk anymore. I allow God and Christ to encircle me with their love, grace, and revelations concerning my journey with it and the reminders of my value that they give me. I also let them guide me to opportunities that will let me give life to other things that I can put into the world or other people I can be a good influence over.
I had to get my Lupron shot today from a pharmacist cause I have no doctor anymore. She replaced the needle but it was barely smaller than the one in the photo. It was a relief that she was able to give me the shot so my endometriosis-laden body doesn't fall apart even though I don't have a doctor anymore. Thank God for pharmacists.
I got my Lupron shot on August 8, 2022 and that will keep me okay til October/November.
Unfortunately, my body went into overdrive hell in terms of endometriosis symptoms and made me extremely ill: bleeding, pain, cramps, and diarrhea that made me ill for at least a week, and resting or physiotherapy didn't help nor did food adjustments, so I sought to make an appointment with my GP, but I found out that Dr. Saif was gone - later, I found to Ontario. Thus, I was forced to phone Dr. Topping for an appointment. I got in within two days of my call and when I went to see Dr. Topping, she said I was doing okay with what I was doing, but suggested I drop the estradot because it might make a difference. She also recommended I get a GP, which is impossible at the moment because Lethbridge doctors are currently not accepting new patients period. I did go off the estradot as recommended and I did some more food adjustments (stopped quinoa bread and dairy free yogurt). I am also keeping off sugar as much as possible and doing minimal self-monitored physiotherapy while being mindful of the heat, as the heat really has a bad effect on me. On top of that, I made sure I had enough perscriptions to get me through the year and made an agreement with a pharmacy to get my Lupron shots as I need them til I can get a GP.
Hopefully, my body will do well until a doctor can be found or my appointment in Calgary comes through. At least I am not going to lose that even though I am losing my OB and GP.
April and May has been yet another downturn in my health.
Around the middle of April, I got massively sick with diarrhea, bleeding, pain, etc. and called in to my GP for a referral to another gynecologist because I felt my current one wasn't doing what she could. I went to the GP and she wanted baseline bloodwork.
I quickly scheduled that bloodwork, as I just wanted to get it done. The initial labs said elevated liver enzymes, so the doctor ordered repeat labs with more tests and an ultrasound. I went and got the repeat labs scheduled and done that very day.
May 18, 2022
The second time I went was pretty much as challenging as the first with finding veins; the lab tech had a hard time...tied the tie around both arms and tapped for veins before finally using my right hand and a butterfly needle.
May 25, 2022
The repeat bloodwork was allegedly normal, so they said on the phone, but I went and did the ultrasound anyway. I got a male tech and he ended up doing scans from sternum to a dry pelvis scan because he wanted to be thorough. He took about 57 pictures in all and it was gentle, but some of the areas hurt very much when they were pressed upon. The scan was only supposed to be abdominal, focusing on the liver, so I find it interesting that he included the pelvis and when I asked about it and mentioned the endo, he said that if it was very bad, they would see it in the scans.
June 1, 2022
Ultimately, there was no reason in the ultrasound to explain the elevated enzyme and I was advised to keep an eye on it.
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.
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.
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...
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.
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.
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...
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.
The bloodwork looks good, so I am thankfully cancer-free. Yet, the battle is still ongoing.
I am on four medications: the Mirena IUD, the Lupron shot, the Topiramate (2 per day) pills to keep the pain away, and estradot patches on the hips every few days for hormones. I'm 33, but I am in a body that belongs to someone in their 40s. I am also on a physical therapy regimen of walking three times a week and most of the time, I manage that well. I did try yoga for a bit, but yoga is not my thing, so I quit at the advice of the kinesiologist. There are still bad physical days when the IBS kicks in and smashes my body to bits, but I am doing my best to eat healthy and a lot less, so whatever happens happens.
On the bad days, there can be bleeding along with mad amounts of diarrhea even when I don't eat all that much or anything at all. If my body can barely manage itself on those bad days, I can't help but wonder how it will manage a child or if it can at all? Should I let it? I know God commanded that we are to multiply and replenish the earth, but I have really been questioning whether or not I can and should ever since late 2017 when I got diagnosed. Would it be safe for me to get pregnant or can I even get pregnant? If I did get pregnant, would I be able to carry a baby to term safely or would I lose it? If I carried a kid, would I die or get massively spent giving birth? I'm not married yet, so there is time for me to process these questions, but I know they will have to eventually be addressed if the opportunity for marriage comes within the childbearing years. I'm Mormon and I know what the expectations for Mormon women are in regards to children, but I have let those go even though it hurts others to hear me admit it.
I came to the Community Blood Lab this morning and I had been told on the phone that I could walk in, but they actually preferred that people phone for appointments. Anyway, they let me in and took my form. The place was somewhat busy, but everyone was masked and distanced appropriately. After waiting for a while, I was called in and the tech was very quick at finding a vein and drawing five vials of blood. The labwork should be back Monday and then I'll know if anything is actually up.
The appointment was set for 8 a.m., so I woke at 6:45 a.m. and was at the building itself shortly after 7:30 a.m.. There were COVID screeners just inside the building and I quickly passed the screening before making my way upstairs to the appropriate area. I first met with a nurse and got my blood pressure and weight taken. I also admitted I was nervous about the physical because I had never had a pelvic while conscious or felt it. For my procedures, I was either unconscious or had a spinal block. The nurse was understanding and I got to talk with Dr. Robert first before anything was actually done. The physiotherapist was also there and the two of them felt different parts of my body before they had me lie down so that Dr. Robert could do the pelvic. It was a painful process that make me feel like my insides were being gutted and she ultimately determined that the endometriosis was under control, but that my muscles were tight. Dr. Robert also ordered some bloodwork, though, to make sure she didn't miss anything. I also got a referral to a psychologist to discuss my pain and a kinesiologist and on top of all that, I got a perscription for a new medication to help with pain. A 4th medication...at 33 years old. I am turning into a walking pharmacy and I have just barely touched middle age. How horrifying.
After that appointment was done, I went and saw the kinesiologist. She was very nice and taught me some exercises related to posture and breathing and also told me to do more walking for smaller intervals throughout the week.
Seeking any sort of medical treatment, let alone constant medical treatment, during COVID is really burdensome. I never thought I'd have to utilize the medical system so heavily during a global pandemic, but here I am. I guess this is part of the refinement plan God has for me. I just have to trust in the plan God has for me and keep pushing forward to deal with what is and what may yet come in terms of my health journey. God will be with me every step of the way and I know that he will make my burdens bearable.
I got in to the actual appointment rather quickly and Dr. Topping gave me my shot and then put me back on the Estradot to help with the hot flashes. We also discussed the appointments on January 14th.
