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Silent no more—

I have been working on this post for months.

We start out in September of 2017

Ugh… this is a proper description of how I feel when I am not sobbing in pain! Last Friday (9 days ago) they discovered 3 lovey ovarian cysts. This explains why I was swelling like I was about to have a miracle baby. I have NO uterus. Yes, doctor, I can assure you I am NOT pregnant! He ran the test anyways. 🙄what followed was a week of unbearable pain. The cysts had grown not decreased by Wednesday. The test they have to do for this is torture. If I had a boggart it would be an ultrasound tech with that ‘wand’ 😱 (yes, I just threw that HP reference in and have no regrets!) I am not a crust, crying hurt and fixes nothing. But I have been at a pain level this week that left me in tears every day.

Why is this happening? Why is the pain so severe for me? Well, I was diagnosed with stage 4 endometriosis in the summer of 2016 and when my ovary acts this way it usually means my endo is active.

And it also means trips to the ER to make sure the cysts don’t tear my ovary. No endo sister wants to go see an emergency room doctor. They are only two types of ER visits. It goes well or it goes to bad. Like, want to die bad.

Today’s visit didn’t start out looking promising. The doctor was originally refusing to do anything at all. Thankfully, though, my incredible OBGYN and endo surgeon went to bat for me. He made them give me pain medication before and after the torture session, they call a pelvic ultrasound. I see him Monday and will hug him and love him and remind him how awesome he is.

Problematical, these cysts are happening every month and leaving me in agony for 5-10 days. But the largest obstacle is that he can’t remove the ovary due to my pulmonary Embolism situation.

Seriously problematical is this is happening monthly.

Here is last months belly and the now missing bed Air mattresses are not a great substitute for a soft pillow top mattress. A lot of People (even Doctors) ask what endo feels like. The only way I can think to describe the pain is that it feels like barbed wire tightening around your ovary or uterus, and the wire is piercing your insides randomly. Any movement can cause crippling pain.

I wish I was being dramatic, but I am not alone with this analogy. The swelling is even common and called ‘endo belly’

A quick google search on endometriosis pulls up pictures like these:If you really want a shock, look up #endobelly on Instagram. Your belly is hard as a rock, full of pain and misery. I have no uterus or right ovary. I even lost my appendix to endo. My endo grew during pregnancy and is recto-vaginal endometriosis. I’m the rare endo girl because of course, I am. Rare is my jam!

July belly pic This got old a decade ago.

This green shirt was my favourite shirt when pregnant. 

June Belly Pic above.

I had just done cardio for PT and was on my way for a date with my heating pad.

Even trying to spend time with family is impossible.

April belly and burst cyst over Easter I smile over the absurdity that these really could be shots of a pregnancy. I joke I should do glamour shots when endo belly hits since we did not bother to do them when I was pregnant.

To survive this journey you need a good sense of humour.

I’m exhausted, in pain, and dreaming of a pillow top mattress. But, I am going to keep fighting because I am an endo warrior. This sucks and it’s hard but I’ve got this. What really upsets me is 176 million women around the world know they have endo. Why is there no cure? As an endo sister, I have to speak up and speak out. It’s my duty to the sisters who couldn’t take anymore so they took their life to escape the pain. It’s my duty to speak up so the women just diagnosed know more than just what they can google. I owe my story to millions of women, who like me, feel validation by knowing others have the same pain and symptoms. I also owe my story to all the women not yet diagnosed.

I will keep speaking out even if removing my last body part in my reproductive system (the left ovary) puts a stop to all this pain and misery. It could help, it could not, but it is the next step.

We, every endo sister, should stay silent no more. The only control I have over my pain, disease and circumstances as an endo sister is how I use my voice and my attitude. I’m a fighter, I have no choice. So, with no sleep tonight I will attempt to go to the free zoo day with my kids who deserve some fun after having mummy be in hospital this week!

I debated on publishing this. But as I sit here with my tens unit crying, I feel like I should. Rich, poor, it doesn’t matter. Endo hits us all and at the end of the day, you are just a girl with a tens unit, a heating pad, and if you are really lucky some Advil or something stronger. I not that lucky. Advil, Ibroprophen, Naproxen. All were taken away when I went on blood thinner medication for the clot. Not fun… not fun at all.

3 thoughts on “Silent no more—”

  1. It’s horrible what’s you live. I can’t imagine how you support so much pain ! You’re really amazing. You have no problem to describe the sensation of a crucio !
    I send you all my prayers. Kiss from Lyon (France)..

    Like

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