What does your Endo feel like?


I was asked to explain what it was like, the “flares”, which is really just a word we use to explain our daily pain is increased significantly. Many times I fear my appendix is about to burst. I experience many of the same symptoms as appendicitis.

1. Inflammation. All of my pelvic organs become swollen and inflamed. My stomach becomes distended and I appear 5 to 6 months with child.
2. Pelvic pain. On the right side, when I move or shift my position I feel this pulling, tearing from my ovary to my right hip. If I stand I feel this pulling, warm sensation, much like when you stretch your muscles after a long day and they are tight and burn a bit. My left pelvic area feels like a ripped ligament. Pulling, hot, and searing pain when I move or sit in a wrong way.
3. Kidney involvement. My kidneys feel as though they are under pressure, like someone is squeezing them. They create a kidney stone like pain, not as strong, but close to it.
4. Bowel involvement. It causes IBS symptoms times 10.  My bowels swell, they ache within my body and in some places feel like they are zip tied together. It is extremely painful to use the bathroom at this time.
5. Bladder involvement. Due to having IC with Endo my bladder takes a double whammy. I have to urinate between 40 and 60 times through the day and night. The bladder spasms cause intense pain that feels like a knife being stabbed from the inside out in my vaginal area.
6. Headaches and Migraines. My headaches start when I wake and soon after become a migraine. Something in conjunction with Endometriosis causes this horrible issue.
7. Lower back pain. It is intense, I can not sit with out heat being applied to my lower back. With everything inside inflamed, and endo being close to the sciatica nerve, the pain is unrelenting. Even on the strongest medications.  It also involves my hips. Inflammation  spreading to my hips causing my GTB to become active. So no matter how I sit or lay, my hips burn, radiating down my thighs and at times in my knees.
8. Leg pain, my legs ache, like after you ran for a long distance, but the ache is actually in the bone, not the muscle.
9. Nausea. Everything I eat or drink makes me feel sick. Waves of nausea hit me over and over.
10. Severe fatigue. I can sleep all night, wake up, get the kids to school. Come home and have a cup of coffee, then I am unable to keep my eyes open. I end up sleeping again. Then sleeping two or three more times during the day, and evening.

How intense in the pain? I’ve had kidney stones large enough to shut down my kidneys, I’ve had a baby all natural no drugs, and the pain does not touch what endometriosis does to my body.  While in the ER for suspected appendix issues, the meds stopped the pain for that, but I was still feeling the endometriosis pain through the meds, it did not even dull it.

There is an idea of what happens when my body decides it needs to ovulate. I have pain every day, when I say it is flared, simply means it’s gone from a manageable 5-6 to a 10 on the pain scale. I’m very good at hiding my pain. As I did for years growing up. I was told it was normal for girls to have such pain during their periods. It is something that I am learning to show more so I can get the help I need. After years of being tough and going at it myself, my body and mind are finally to the point I don’t want to fight it alone. I don’t want to live in pain any longer.

#endometriosis #chronicpain

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