I have Endometriosis. It is a condition that I don’t speak much about, but it is also one of the most life-changing illnesses that I have ever gone through. It is extremely painful, and it has caused a LOT of grief in my life. I believe that most women have been programmed to keep silent about any issue that happens ‘below the belt’, and I must admit I have spent more than my fair share of time in silence. Since March is Endometriosis Awareness Month, it is a purposeful time to share some of my story with all of you.
For those who don’t know what Endometriosis is, I will try to explain it in simple terms. A woman’s uterus is lined with endometrial tissue. The cells that make up that tissue can travel to other places in your body and grow into painful lesions. Those lesions are most commonly found on the bladder, bowel, intestines, colon, appendix, and rectum – BUT Endo tissue can travel anywhere, and has been found on lungs, the spine, and even the brain.
These lesions can cause adhesions and a mass of scar tissue. It is an extremely painful disease, the most common symptoms are:
- Very painful menstrual cramps; pain may get worse over time
- Chronic pain in the lower back and pelvis
- Pain during or after sex
- Intestinal pain
- Painful bowel movements or painful urination during menstrual periods
- Spotting or bleeding between menstrual periods
- Infertility or not being able to get pregnant
- Diarrhea, constipation, bloating, or nausea, especially during menstrual periods
I have Endometriosis – and it has had a life-changing impact on my life. I have always had ‘painful’ periods, right from the get go at 12 years old, but for the most part I kept them to myself. I thought every woman went through pain 2 weeks out of every month, and just thought it was “normal” – but I confused the average “discomfort” that comes with having a menstrual cycle with “pain”, until the pain got so bad it started to control my life.
I woke up one Christmas Eve 4 years ago in excruciating pain and at a loss as to why. Up until that point in my life I had NEVER felt that kind of pain. My parents rushed me to an ER, and they told me it was likely an infection, gave me antibiotics and sent me home… but the pain didn’t go away. We played this game for months on end, back and forth, and NOBODY could figure out where my pelvic pain was coming from. I had internal exam after internal exam, numerous blood tests, and was given an insane amount of every antibiotic, antifungal, antiyeast ointment, potion, lotion and pill on the market – even though EVERY test I had came back negative. Even at one point I was prescribed a PROSTATE medication (and um, no, I don’t have a prostate ;))…The medical community was just grasping at straws… As my pain got worse and worse to the point that I was completely bedridden, everyone I saw just seemed to become more clueless… NOBODY could figure out what was going on with me… until I met an angel in the ER one day.
I had gone through an excruciating few weeks, doing nothing but crying out, shaking, rocking back and forth and praying that I would just stop breathing because I couldn’t handle the pain any longer. I reached out to My Mom in the middle of the night, and she got out of bed and drove me to the hospital. My Mom is ferocious when it comes to protecting those she loves, and she doesn’t take NO for an answer, and she had HAD enough of me falling through the cracks of our healthcare system… She demanded an answer…
The nurse I had taking care of me that morning was a nice lady, from what I remember – but the ER Doctor didn’t have much time for me. He assumed I was hypersensitive and just had PMS… After the nurse pushed through syringe after syringe of morphine into my IV and it STILL didn’t touch my pain she knew something was wrong. I was ready to lose my mind, shaking uncontrollable from the pain, and I was told that it was just PMS? Are you kidding me? That sent my Mom into action faster than I had seen her react to almost anything! She ended up outside my room having “a word in private” with the ER staff, and the next thing I remember is being told I was going to be seen by a OB/GYN once she came out of surgery… FINALLY maybe THIS WAS THE ANSWER…
A beautifully sweet woman came into my room in scrubs, and introduced herself as a OB/Gyn surgeon and specialist in Chronic Pelvic Pain. She came and sat on my bed and held my hand, and it was the FIRST validation I had that I wasn’t crazy, and this pain wasn’t all in my head. She tried to admit me right then and there, but there were no available beds in any hospital in the city (this is a very common occurance where I live) – so she gave me her card, a prescription, and demanded that I call her PERSONALLY in her office that Monday morning. Come hell or high water she was going to help me.
To make a long story a little shorter, I ended up seeing her a few times in her office before we scheduled surgery. Each time she held my hand… she cried with me… she acknowledged that the pain I was experiencing was indeed as SEVERE as I knew it to be… She became a godsend in my life, and I don’t know if I would have made it through that if it wasn’t for her (and my Mom of course).
The morning of my surgery I was a complete mess. I was SO scared. My Mom held my hand through the whole ‘admitting’ procedure into the day-surgery unit. We spoke about how GOOD it was I was there, and how HOPEFUL we were for finally getting somewhere in this failed health-care system we have. She kept telling me that this could be the answer we had been looking for. I should have felt encouraged, but all I felt was FEAR… My Angel in scrubs met me in the day-surgery unit and once again held my hand… she told me she was going to walk me through every step of the process, and promised me her face would be the last I would see before going to sleep… and she didn’t break her promise. My Mom held my hand all the way to the doors of the OR, and on the other side of those doors my Doctor waited for me, and held my hand down the hall, into the OR, and continued holding my hand while I the anesthesiologist sent me off to la-la land….
I woke up in recovery, and I remember feeling like I couldn’t breathe, and my belly HURT badly. My surgery had taken a little longer than they originally thought it would, and after giving me some oxygen and morphine for the pain, I was told that my Doctor would meet me back on the ward to discuss how the surgery went… I was in a lot of pain, but it was OVER.
My Doctor came in to see me shortly after, and told me that I had Endometriosis. They couldn’t find a lot of “live” tissue to remove, but had found scar tissue, old lesions, and a big adhesion. My appendix and my bowel are now one – my cecum is fused to one side of my appendix. That is why the surgery took longer than expected. She had to consult with another surgeon about the possibility of trying to separate the two…. They decided to not take the risk, and leave it the way it is. They removed as much of the scar tissue as they could, it was ablated, or burned off. Although anyone with Endo knows that it is almost impossible to remove ALL of it, and it is almost a certainty that it will grow back. THAT is the nature of the disease.
Recovery from the surgery was not a whole lot of fun, I will be honest. Because it was a laparoscopic surgery, my abdomen was blown up with gas to essential “float” my organs so they could see the full spectrum of my abdomen. I ended up with 3 incisions that were very small, just 2 stitches in each, and caused a little discomfort, but no pain to speak of. The gas however, THAT was a painful experience!! It takes 8-10 days for your system to absorb and release the Carbon Dioxide. It forms small air pockets before being absorbed, and that was the worst pain. The pockets around my diaphragm made it hard to breathe, and hurt like hell. My Fibromyalgia and my Myofascial Pain flared big time during recovery, and the severe pelvic floor spasms that I had come to know intensified due to the trauma. I ended up back in the hospital 4 days after surgery, and it took me a lot longer to recover than most.
I ended up in intense treatment for Chronic Pelvic Pain for 3 years, it was a REALLY long and hard journey that I will save for another day. I could tell you all many stories! 😉
It still affects my life, but I don’t let it control me anymore. My options at the time for long-term treatment were taking hormones to put me into menopause early, or using a combination of therapies to manage the symptoms. I took the latter option. I have been on the birth-control pill consecutively for 3 years so I never get a period (or in theory that is how it is designed to work, but sometimes it doesn’t). I still have chronic pelvic pain, but nowhere near as badly as it once was. And like everything else that has been thrown my way, I take it one day at a time.
I may never have the ability to have another child – and that is extremely devastating to me. My honey is the absolute LOVE of my life…. and that will never change. There is nothing more that I would want than to have a family with him… And I haven’t fully accepted the thought that this might never happen. But this is what I know for sure…. We ARE a family, no matter whether we bring another child into this world or not. We are a family of our OWN design, and I couldn’t be more proud of that. I also know that I am perfectly loved JUST the way I am. My honey’s love is not dependent on whether or not I can provide him with a child…He will love me passionately and perfectly no matter how our journey through this illness plays out. And… It doesn’t make me less of a woman. This is something that I have really struggled with admitting to myself. For a long time I felt like this illness took away EVERYTHING that made me a woman, but as time has gone on, I have learned that THAT is not the case. I am WHOLE just the way I am – and no disease can take that away from me.
MARCH IS ENDOMETRIOSIS AWARENESS MONTH.
My hope is that my story can bring awareness and hope to others. If you are someone who suffers from this disease, know that you are not alone. I am fighting it as well, right beside you.