My Story….Endometriosis

On March 8, 2022 I had surgery to remove my uterus and was also diagnosed with endometriosis. To get to this point I had to see 3 different gynecologist, this is my story….

In late 2018 I started to have a lot more issues with my period. I was sadly used to painful periods as I have had them ever since I was a teenager but this time it was accompanied by a lot more symptoms including heavy flows and blood clots. 

In early 2019 I paid a visit to my GP and she recommend that I have a pelvic ultrasound to make sure that there wasn’t any fibroids as I have a family history of them. Keep in mind this was before the pandemic and I still had to wait 7 months, I was even on a cancellation list. For those that haven’t had a pelvic ultrasound they start by doing the ultrasound on the lower portion of your abdomen. After that they do an internal ultrasound that will give the doctor a better understand of what could be happening. Picture a long and I mean long wand wrapped in a condom and covered in lub. The one thing that they don’t tell you is that endometriosis does not show on the ultrasounds. 

I head to my doctor’s to get the results of the ultrasound as something was found. My doctor tells me the results. I have congested pelvic veins and she doesn’t know why. She decided to send me to a gynecologist to find out the reason why. By the time I receive these test results and get the referral to the gynecologist my symptoms have gotten worse. Painful heavy periods but the worse part was the migraines and next level fatigue that accompanied those symptoms. I couldn’t make it though a work day without wanting to take a nap. My energy to do anything was at an all time low and I spent most of my free time on the couch. I felt mostly normal only 1 week out of the month. 

I had high hopes that the gynecologist would be able to help me get rid of my symptoms. I also went in with questions of my own. By this point I was seriously thinking it might be best to have a hysterectomy. 

Lets just say that those hopes were dashed after spending 5 minutes talking to the doctor. After I explained my symptoms to her, so told me her treatment plan. That was to put me on a newer hormone that was designed to help patients with endometriosis, keep in mind that at this point I wasn’t diagnosed with endometriosis. This was a shot in the dark diagnoses with no proof that I actually had it. I asked if removing the uterus was an option if the hormones didn’t work. She told me that she would just put me on strong hormones. Which is not something that I had wanted to do. I had also mentioned to her that at this point in my life I was in my mind too old to have kids. Something that I have accepted and I am perfectly happy being the fun Aunty. She told me that I was still young enough to have kids and that she had other patients that are older then me that have had kids. During the course of this visit I felt like I was completely ignored by the doctor and that she was more interested in pushing hormone therapy on me then actually looking for the root cause of my issue. Needless to say I wasn’t a happy person.

I decided to try the low dose hormones because at this point anything was better then nothing. They helped with some of my symptoms for about a year. The symptoms slowly started to come back so I decided to go see another doctor to see if they could help me.

The second gynecologist I saw told me that there was nothing more that she could do for me other than put me on birth control pills and even that might not help.

By this point I was frustrated and almost ready to give up, until my friend started talking about the gynecologist that she was seeing. I decided to ask my doctor for another referral as by this point a lot more of my symptoms were starting to return. For my first appointment with Dr. Walters, it was a night and day different. She listened to me and everything I said. When I asked if removing the uterus was an options she was completely on board. Needless to say I was completely surprised by this and informed her of my previous experiences. What she said to me has stuck with me:

“If a 20 year old is mature enough to have a baby, then a 38 year old women is mature enough to make the decision to not and have her uterus removed” Truer words have never been spoken, society looks at most women like they were put here to have babies and that is it. Having a kid is just as permanent as having a uterus removed. 

Dr. Walters tells me that the surgery will be within 5 months. Keep in mind this was during the pandemic when we had a lot more restrictions in place. In fact I was expecting that my surgery would get cancelled at least once. The first date for my surgery that they gave me was Feb 10/22 and it would take place at the Victoria Hospital, that date ended up being cancelled. My new date for the surgery was March 8/22 at the newer HSC Women’s Hospital. My pre-op appointment was done virtually and Dr. Walters walked me though the steps they do to remove the uterus, cervix and fallopian tubes. The surgery is done laparoscopically and you end up delivering the uterus like a baby. They also have to pump you full of gas so that they can see all the organs properly. 

During this time the Manitoba Government changed the amount COVID tests one needed before surgery. I had to do 1 test 10 days before my surgery and the other one was done 1 day before my surgery. Let me tell you those PCR COVID-19 test aren’t the nicest test to have to go though but it was necessary. 

March 8 arrives and its surgery day. I had been told before hand that I might need to spend the night in the hospital. Not something that I had wanted to do and I went into it thinking that I would be going home at the end of the day. I wake up from surgery and wholly crap do I have such pressure in my lower abdomen that I want to pee, weirdly though I had no pain. The nurse told me that it was too far for me to walk to the bathroom since I had just woken up, so my only option was the bed pan. Which is awkward and not gonna lie a little weird, since I was in an odd position I couldn’t go. The nurse figured that it was from the surgery and decided to give me some IV pain killers which I believe was fentanyl and also some anti-nausea meds for the nausea. Shortly after the nurse gave me the medication she noticed that every time she would talk to me my heart rate would spike. She ended up having the anesthesiologist come and take a look at me. She checked my chest to make sure that none of the gas bubbles had gotten into the chest area. She also request that I have an EKG done to rule out anything. 

Since my heart rate remained high she recommending that I be admitted for the night in order to be monitored and to see if they could bring my heart rate down. They took me for a ride up to my room which was on the 5th floor of the hospital. Now let me tell you the hospital rooms were almost as nice as a hotel room. I had my own room with free cable tv and you could also use your Netflix account there if you wanted. I was way to high and out of it to even remember my Netflix log in! Once I was situate in my room, Dr. Walters came to see me to tell me how my surgery went. She mentioned that it went very well and that I had minimal bleeding. She also told me that they had discover some endometriosis. It wasn’t until later on that I found out the endometriosis was on the uterosacral ligament. These ligaments are what help support the uterus and this type of endometriosis tends to be quite painful. She probably told me more things about the surgery but its hard to remember the details. 

I was hooked up to an IV with fluids the entire time I was admitted, by 2am my heart rate still hadn’t come down. They were trying to bring it below 100 beats a minute and at this point started to treat me for dehydration. I had multiple bags of IV fluids plus 2 rounds of half a bag of IV fluids. The 2 smaller bags of IV fluids were pumped into me over a hour time span. I was finally able to go home around 3p on the 9th. It took me roughly 10 weeks to full recover to where my energy returned to normal. I had gotten so used to feeling tired and crappy that I completely forgot what it felt like to feel good. 

What have I learnt from this experience, you and only you can advocate for your health. It is completely ok to ask for a second or third option. Don’t feel shy about saying it either. In fact I wish I would have done it sooner. I have no regrets on having my uterus removed and every woman that I know that has had it remove say it was the best thing they ever did. Some doctors perception on periods need to change. Too many times I have heard from people that their GP’s tell them that a painful period is normal. Being curled up in a ball on the couch in pain is NOT NORMAL. As well doctors shouldn’t just assume that a women wants to have kids. Not everyone does, and to tell them that they won’t remove the uterus because you might change your mind isn’t acceptable. Unfortunately there are a lot of things that could have been done differently within the health care system. 

I will leave it at this having the surgery was the best decision I ever made and I would make it all over again multiple times to be pain free and have my live back to normal. If I hadn’t had the surgery I wouldn’t have been able to capture some of the images that I have this year. Including spending 4 hours on the beach photographing an amazing northern lights show.

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