My Endo Story

Last updated: July 2022

My story begins in July 2020. I was delivering a baby and in my emergency c-section after so much birth trauma, I hear 'Oh... Oh.... what is that?' while I am cut open on the table with my brand new baby on my chest. My surgeon was looking at my organs with endometriosis all over them- including my colon. At the time we didn't know what this was, and she took biopsies to investigate what it actually was. I was a brand new mother taking my baby home to play the waiting game for those biopsy results.

Just trying to enjoy my new baby

I tried as hard as I could to keep that out of my mind and enjoy the newborn bliss. I felt fine- I only had some back pain in pregnancy- I only had really terrible periods for a couple of days a month- I only had bad cramps- I only had ovulation pain shoot down my leg for a couple of days a month. I was in complete denial. After breastfeeding when my period returned- these periods were NEXT LEVEL. Seemingly pregnancy had kicked the endo into full gear.

I only found brief relief before it hit the fan

I had a colonoscopy to ensure that the endo had not reached inside my colon (gosh I hope I do not need to do another one of those again). I got an IUD inserted and after 2 months of spotting, things got much better- until they didn't. We tried lolo- a low dose progesterone only pill. That brought on PPD after only 3 weeks so I stopped this drug. I am so sensitive to medications that I didn't think I could try another one. Fast forward a few months, and we tried Synarel- a hormonal nasal spray- that made me go crazy after only 2 weeks. I had suicidal thoughts, rage, severe mood swings, etc. It was BRUTAL. Living in the pain was easier than dealing with how the nasal spray was making me feel.

My endo has gone full blown now

Now here we are, day 5 of debilitating pain. I have stayed home from work one day this week because laying down is the only position that I can find a tiny bit of comfort. I have terrible back pain, swelling- I look 5 months pregnant, nausea, dizziness, fatigue, and of course cramps. Today I am working with my heating pad hidden underneath my cardigan at my desk.

New things to now consider

My Endo Specialist has booked me in for an MRI which is not too far out, but when we meet with her after the results come in to discuss treatment plan, she needs us to have a clear fertility plan. I am 29 years old, and my son is not even 2. A clear fertility plan is NOT EASY at this point in my life. We thought we would only have one child especially after a miscarriage, but this pressure of the fertility window closing has begun to sway our decision. The endometriosis has invaded my ovary so if we choose to have surgery, they may need to remove my organs.

This is hard. Endo is hard. Thanks for reading my story.

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