by Mara Rose. Mara has been living with chronic pain and endometriosis for the last 15 years.
What is it like to live with endometriosis?
We get this question a lot. It’s a question that no statistic, no graphic, and no medical documentation can answer.
It hit me the day before my fourth surgery… My life often feels as though it revolves around surgery, pills, and doctors. And, unfortunately, this probably isn’t my last surgery.
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 ourselves 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 remembering 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 lifelong 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 fourth 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 three 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 an outpatient 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 three days are exhausting and painful.
On top of the pain, we can’t lift our babies or kids for at least five 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 fourth excision surgery in five 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 fourth 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!
Mara Rose is a writer living with endometriosis, adenomyosis, fibromyalgia and degenerative disc “disease.” She lives in Wisconsin with her husband and son, Micah. She’s active in the endometriosis and chronic pain online communities, and she’s currently working to develop local patient mentor programs in her area.