Thread by @SQLGinger

I need to talk about #endometriosis care in #Alberta

If you don’t want to hear period talk, scroll.

I may mention transgender health, if you don’t like it, unfollow me.

This may or may not get political, if that bugs you... scroll.

#abpoli #AbLeg #AlbertaHealthCare
1/25

We need better gynaecological health care in Alberta. For both women AND men.

Here’s why.

I went 25 years undiagnosed and being told “it’s in my head.” In fact, I’ve been hospitalized for that, through so much psychotherapy and even been on drugs for that.
2/25

It didn’t help. I mean I learned to shut up about my symptoms. But they were still there. And I thought I was hysterical or something.

Meanwhile. It’s been affecting every facet of my life. Relationships, jobs, marriages. I’ve been homeless from this.
3/25

Sometimes it’s little things like people thinking I’m a flake because I cancel plans a lot. But the little things add up to a lot. So many bosses thought I was malingering with all the sick time. I had a spouse leave over the baby thing. I lost my dream job at one point.
4/25

I also went into a form of bankruptcy from the cost of US medical bills. That also doesn’t mean Canadian health care is free or that being sick isn’t expensive. It’s super expensive.

One of the drugs I was taking was $2000 a month because the regular dose wasn’t enough.
5/25

Then there’s all the “other” things that cost that you’re expected to do or you are a non-compliant patient.

Specialized physio, kinesiology, dieticians, over the country products to manage it, etc. All these appointments are during work hours 2-3x a week.
6/25

At a particularly low point, the constant job loss meant I ended up living in the garage I was renting to store my furniture. It was only $50 a month. But I was safe. Cold. But safe.
#chronicIllness
7/25

I mentioned my first marriage. After 7 years in my current one with doctors constantly telling my current spouse I was doing it for attention, my spouse finally asked “Do you just need the attention?” I almost left. But my diagnosis came shortly after (so did an apology).
8/25

After 25 years to be diagnosed, & seeking help for 3 years, I’m finally on the wait list for surgery which is considered the “gold-standard” in care.

These kind of problems are common in many countries BTW. For many reasons. One being a lack of specially trained surgeons.
9/25

Another big one is the general yuck factor many people are taught about gynaecological health and periods in general.

Here’s the fun part. I’m still technically not diagnosed. There is no good imaging available here for this. So to get a proper diagnosis. I need surgery!
10/25

They need to cut us open and actually look for it!

I can’t imagine all the extra visits over the years cost the Heath system less than training more doctors in this. We have 2 amazing medical schools in the province. Yet. Our specialists for this train elsewhere.
11/25

It certainly costs me a lot. And I know it costs for me to walk in the doors of my clinic all the time. So why aren’t we doing a better job of not only period education and what is and isn’t normal, but offering more training for doctors in identifying and removing it?
12/25

And it’s not just the cost to the health care system. Remember all those lost jobs. I mean, now I’m at the point where I have and can throw up in a trash can from pain and continue working. But sometimes it’s beyond what I can cope with.
13/25

At one job I passed out, fell down the stairs, landed on my boss and started throwing up. I’ve seen the security footage. It was scary. I was at work because they were threatening to fire me over yet again, sick time. I lost the job soon after.
14/25

Sick time, lost wages, all these things have an actual effect on the economy.

And then there’s the effect on me, a human and my life. And the people who love me. It’s hard on my spouse not being able to help me.
15/25

I’m often isolated due to being too sick to go do things. People stop calling, asking me to see me. Romantic relationships fail quickly when your body does. My current spouse first ended up with me in emerg 3 weeks into our relationship. It’s hard to get to know someone.
16/25

I’m also really frustrated. Because I have nights like tonight where I haven’t had a wink of sleep due to incredible pain. This morning I start a class to get better at my job and run my own business. Meanwhile I’m terrified because I haven’t slept.
17/25

I’ve been busy the last 2 years trying to retool and transition into a job I can do from home. I feel like I’m running on empty when I’m coming late into a career where some folks have been coding since they could read. I love the challenge of databases though.
18/25

I feel like I need my mind running at full capacity, which is hard to do when I haven’t slept, am dealing with some level of pain every day, and some of the meds they use for it affect your concentration.
19/25

Why don’t you go on #AISH (disability in Alberta)? You see, in Alberta, disability gets clawed back if you are married or common law. In fact my friend had hers clawed back when her house burned down and her mom died for STAYING with her boyfriend. I also like working.
20/25

While my spouse earns decent money, it’s expensive to live in this province. And living with a sick person has no end to costs. So I work more than I should and probably bring on flares from how much I work. Did I mention I LIKE working? I need my mind engaged.
21/25

I’ve been especially struggling the last few months (well year, but I was told the pain was more anxiety), due to kidney issues. Could be from many things including endo. But it took a year to find out it was enlarged because I was told it was anxiety.
22/25

The first response is always that femmes are imagining it. Then we need to fight for months for more tests to be run. Only for it to be confirmed. So much time and money could be saved by believing people assigned female at birth.
23/25

We need to treat doctors better in Alberta. Good ones are leaving! We also need to start educating more of them to be able to do this surgery. And more of them to recognize the symptoms (I had so many that my GP didn’t know were possible Endo symptoms or complications). 24/25

Don’t feel bad for me. I’ll be fine. I’m smart, competent & always find a way to survive. Not everyone can. That’s the point. Fight for us. Help change the system. Demand better health care in the province. Demand better gyn health. #abpoli #ableb #healthCare #BelieveWomen 25/25