We get this question a lot. It’s a question that no statistic, no graphic and no medical documentation can answer.
What is it like to live with Endometriosis?
It hit me the day before my 4th surgery… my life often feels as though it revolves around surgery, pills and doctors. And, unfortunately, this probably isn’t my last one.
So what is it like?
Living with Endo is like trying to be your own personal cheerleader… every day, all day. We are constantly giving self pep talks, telling ourselves that we are okay, fighting through frustrating unwanted fatigue, battling relentless daily abdominal, back and leg pain. From the moment we wake up, until the moment we go to sleep… we are giving it our all just to function “normally”.
When we aren’t in excruciating pain, we are resting or taking advantage of a good pain day without trying to overdo it. There is a constant balance of enjoying life, but not too much.
The older we get, the crazier our symptoms get and the more our pain increases. I relish in my “glory days” before the pain became unbearable. Back when I could run in high heels, party all night, or go out of town without my heating pad. Those days seem far away now.
There is no magic pill. No magic surgery or procedure. There is no miraculous solution. Endo is not “cured” by pregnancy or surgery or menopause. This is a life long illness.
I’ve never gone into details before, but I believe honesty and realism paints the best picture and helps to raise awareness… so… what is it like to have these surgeries?
Last week I was getting ready for my 4th surgery. Most surgeons require you to do a bowel prep – which is essential for your own safety in case something goes wrong during the procedure. So basically, you are required to give yourself the stomach flu… “just in case”. You spend about 3 hours in the bathroom and feel completely drained when it’s over. Since there is nothing left in our body, we shiver from being cold and have very little energy.
The morning of surgery, we can’t eat or drink anything – not even a drop of water. Excision for Endometriosis is a day surgery, meaning we can go home that same day.
After a nice long nap, we wake up in recovery as if it was all a pleasant dream. But then, our insides twist and cramp. The nurse rushes back with meds. We go on to the next recovery phase and then get released if the pain is controlled.
When we get home from surgery, it takes effort to get comfortable and sleep again. The gas pain (from inflating the abdomen) hasn’t started yet, but it will.
The gas eventually travels around your body, looking for a way out. It pushes against your shoulders, your kidneys, your neck. When you try to lie down, the gas plunges into your side and you cry out in agony. Then the healing pain starts… you feel each and every area inside your abdomen that was cut. Your belly button is twisted and aching. The first 3 days are exhausting and painful.
On top of the pain, we can’t lift our babies or kids for at least 5 days. Instead we have to sit back and watch them play. Watch them cry out for you to hold them. But all you can do is stay still – otherwise the pain will get bad again.
This is what we go through. Every time. For me, it was my 4th excision surgery in 5 years (the first was done incorrectly). Some women go through this process every 2-3 years… just to feel well again!
And then the symptoms start again… chronic abdominal cramping, allergies, heavy bleeding, low back pain, spotting, diarrhea, painful bowel movement, painful urination, frequent urination, frequent migraines, cramping, sinus pressure, chronic fatigue.
It’s a cycle. A vicious, awful cycle.
But we press on… we hope for a cure… we delight in good days. It would be easier to give up. But we don’t.
Despite having to go through this painful process, I am happy to report that my 4th surgery was successful and the pain is already reduced. I am so very thankful for this change!
The good news about having surgeries is that it does improve our pain – which is why we continue to do it. God will never give us more than we can handle. I truly believe that we are some of the strongest women you will meet.
To my Endo sisters… Thank you for all the support this year! Keep fighting!!! Turn it yellow!!!
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