Now We're Getting Somewhere- with Endometriosis too

Type 1 Diabetes Blog

Now We're Getting Somewhere- with Endometriosis too

A few days after my endocrinologist appointment, I went off to volunteer at diabetes camp back in GA. My period was still in full swing. While I was at camp, it “stopped” for two days, but it came back with full force after that.

During camp, I confided in some of my close friends about everything going on. That’s when it hit me. My period had been going on for 6 weeks at this point. 6 weeks of bleeding. 6 weeks of low iron. 6 weeks of not running. 6 weeks of crazy blood sugars. 6 weeks of emotions going haywire. 6 weeks of all of the fun stuff associated with my period- cramping, mood swings, acne, hunger, inability to sleep, exhaustion, etc. My body reached its limit. I was attempting self-care, but it proved to be difficult. Even some of the men in my life, were in disbelief and knew this was not okay (I’m not one for gender norms- but that’s a sign something is not okay).

I knew I had another OBGYN appointment with a new health care provider the following week. I held onto hope that things would change, but at this point my confidence remained low.

When I arrived at my appointment, I discovered the former provider hadn’t sent over any of my records. This made things difficult, and I repeated my entire medical history, again. I shared what was going on, again. It felt like a broken record. It felt like sharing the same thing and trying to fix things over and over with little return. The good news was that my period was lighter that day, but I didn’t feel much better.

While we were talking about my period and everything going on, I absolutely lost it then. The exhaustion, the anger, the sadness fell right out of me. I was burned out and fed up. I cried for everything happening and how I felt treated. The diabetes. Getting missed. The correlation. How long everything was taking. How it felt like this was treated as “not that big of deal.” Being on my period probably attributed to my emotions as well. In between sobs, I told her I just wanted my period to stop. That’s all I wanted.

After I finished letting it out, I felt embarrassed and even more exhausted. I really don’t enjoy getting emotional in front of people, especially people I’m meeting for the first time. We started talking about my options and her overall thoughts.

Which were-

  • It’s irritating that no one did initial blood work when I was younger.
  • She’s going to go ahead and diagnosis me with PCOS and endometriosis. (Yes- a THIRD diagnosis in a few weeks).
  • However it is difficult to be 100% definitive without going of off birth control for the PCOS and doing exploratory surgery for the endometriosis. Both of which she thought were bad ideas. Why make me (more) miserable?  

At this point I shared with her the fact that if I’m going to ever have surgery, I’d rather get a hysterectomy since I don’t want children.  I know that’s extreme and unlikely to happen. I hear and recognize that I might change my mind, but in my gut this feels unlikely.

I never like sharing this detail because I always feel judged or get comments about how wrong I am. (Like I said, I recognize that I could change my mind). This healthcare provider surprised me. She didn’t say any of that. She told me it sounds like I have obviously put a lot of thought behind this, but it’s good I recognize that I am young. It’d be very difficult to find someone to do that surgery at my age unless it was a medical emergency, but if I stay consistent in my thought process maybe in the years to come.

Wait… she isn’t saying that it has to wait until my 40’s or that it will never happen. She didn’t tell me how wrong I was. This was a huge shock to me. Wow.

But she looked at me- You do realize that you probably aren’t very fertile right?

I had assumed so. With all of my cysts and everything else, I’m mostly likely not ovulating correctly or at all. I had always wondered how I would truly feel at this news even though I stated I didn’t want to have children. You know what I thought about? I couldn’t imagine what it would be like to be a woman in this position who wanted to have children. I figured it would probably be devastating. I thought of all of my friends who wanted or had children, but I especially thought about my T1D friends who worked so hard or were working so hard to have children. Overall, I felt okay. I felt even more secure in my decision that I didn’t want to have children. But there is a part of me that wonders if this will hit me at some point.

At that moment, I also decided that I liked her.

She went to consult with an OBGYN who specializes in high risk populations (hello diabetes!), PCOS, and endometriosis. She was in agreement with the diagnosis. She agreed it was overdue to change my birth control, and the plan was for me to not have another period again. Thank goodness!

The relief flooded over me. I knew I still had a ways to go, but finally something was changing. I could feel the tears fill my eyes again. I finally had the progress I’d been fighting for. Someone finally listened. I walked out of my appointment with a new prescription and a follow-up appointment with the specialist in 3 months. I also had instructions to come back in if my period didn’t stop, I started feeling poorly again, or my period started again. The even better news? If I was period free and symptom free for over 3 days, I’d be able to run and work out again! This was the best news I received in over a month. After a period approaching 7 weeks, it would hopefully and finally be over.

I left the weight I’d been carrying in that doctor’s office. I felt better emotionally for the first time in a long time too. I held onto the energy and my lightened emotions. For the first time in 6 weeks, I went grocery shopping and did deep cleaning after work.

The next morning, I woke up and took new meds. I felt emotionally better because something was finally happening.I hoped for the best, but I still didn’t trust my body.

Comments


Thank you so much for sharing this, It ´s not so easy to find similar posts in Spain, and unfortunatelly its very dificult to support someone with diabetes when the people around you are not aware of the problems that you have to encounter in everyday life when living with diabetes. If the estimations published are right and the disease affects indeed about 592 million persons until 2035 then we need for sure to do much more!! Inform people and, as you correctly mention in your post, listen to the patient and try to provide not only solutions but also support. Needless to say that from our experience healthy people need to be informed as well in order to better understand, respect and support diabetes patients (whether they are family members, friends, or even clients -restaurants here for example have a long way to go-) Sharing your story will help not only the women I have in mind, but many more, to feel less alone when encountered with these issues. Once again thank you for sharing All the best, saludpublicaaragon
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Submitted by saludpublicaaragon on Fri, 09/16/2016 - 10:00am