I was told I was exaggerating, twelve-years-old and I am staying home from school due to what they called “bad period pain”. I was told it was normal and part of being a woman.
They were wrong…. I was sixteen when I had my first operation for this particular issue and it was then that I was diagnosed with endometriosis. I had many operations after that with the diagnosis of lupus and a large list of other illnesses added to the mix. I was a walking disaster.
2015, three months pregnant on Mother’s Day and in an operating room. They were preparing me for my eleventh laparoscopy. My baby was stuck & growing in my tube, still alive but unable to survive. All surgeons were shocked that my pregnancy lasted this long without my bleeding to death. Sadly, in order to save my life, they needed to take my baby. I felt like my whole world was crashing before me.
When I woke from the surgery they told me that I was lucky. “Lucky” is not a word I would use in this situation! They explained that I once again had endometriosis growing everywhere, my baby was stuck in my tube because I had so many growths and adhesions, part of my internal organs stuck to other parts. They needed to remove my right tube during surgery, they also unstuck my ovaries that were stuck to my uterus and they removed all of the endometriosis growths. Fast forward to this time last year, July 2017. I was having my twelfth surgery to remove yet again, more endometriosis. After giving birth to my miracle daughter in May 2016, the bleeding never stopped. Over a year of bleeding and pain. Yes, that is over a year of my version of a living hell and proof that giving birth is no cure to endometriosis contrary to the popular myths that pregnancy and birth is a cure.
During my pre-surgery appointment I had a routine pap-smear. Then the day finally came for my operation. Whilst anxious and waiting to be taken into the operating room the surgeon finally arrived. He came to the side of my bed and apologised for being late with a concerned look on his face. Did I really know something wasn’t right or was that the anxiety taking over?
He then let me know that my pap results arrived that morning and proceeded to tell me that my results were abnormal. He reassured me that it was going to be okay and asked for me to sign a consent form to have other procedures done. Not only was I going to have the laparoscopy to remove the endometriosis like originally planned, but now he wanted my consent to do a hysteroscopy, D&C and a procedure called a LETTZ . The second I handed the pen back they wheeled me in the operating room and I had those four procedures in one – without any time to think or wrap my head around what I was just told and consented to.
Two and a half hours later I wake to nurses and the surgeon by my bed. He explained that he had to shave back my cervix quite a lot in order to remove the abnormal cells and inflammation. He warned me to expect discomfort, pain and bleeding during my recovery. It was only five days later that I got that dreaded call. The second I saw the surgeons number on my phone, I knew for sure something was wrong. I’m sure anyone with chronic illness knows that when a doctor calls you, it’s never to share good news. With my heart pounding like I just ran a marathon I answered my phone. My fear & anxiety was quickly validated. These were not just pre cancerous cells, the conversation went a little like this.
“I have cervical cancer? Me? I’m only 27, Are you sure?”
WTF this can’t be right!! He assured me that he was confident that everything was removed, he told me that I will live a normal life and all is well now. However, hearing the word cancer is never easy. It is a ovwehelming feeling to be told that you have/had cancer, but I was more than glad that I was going to be okay! In overwhelming excitement, I let my friends and family know that all the cancer and endometriosis was removed.
Little did I know at that time that the battle was far from over. The surgeon and even I, felt confident that the operation would subside my living hell, but the bleeding and pain never stopped, in fact it only got worse. It’s eight months later at this point. I am now over two years of non-stop bleeding and pain. March this year 2018, and there I was weeping as I tell my family that those four procedures in one felt like a complete waste of time.
Eight months after, and I am told that they are sorry but they have tried everything, the inflammation is growing, cells are growing, they can’t stop the bleeding and they can not do anything more to help me. I am told that I would not be able to hold a pregnancy past three months without it killing me. Then I was told there was only one option.
Eight months after I had that operation and found out that I had cancer, I had a complete hysterectomy. They removed my remaining tube, what was left of my cervix, and my uterus, they also did a cystoscopy and bowel surgery. Endometriosis riddled everywhere in my body and it only took eight months for it to spread so aggressively. But knowing I had fast-growing endometriosis and cancer was nothing compared to knowing my womanhood was just ripped away from me without a choice.
Not only was this an emotional journey filled with grief and loss but my recovery was not easy, nor was it straight forward. Having lupus and a compromised immune system with other conditions added to the list automatically puts me in a high category for complications to accrue for even the smallest procedures. I’m sure anyone who has had an operation on their stomach area knows that during surgery they pump you with gas to basically inflate you. The side effects of this are chest and shoulder pain during your recovery which is meant to be “short-lived”. I remember whilst in the hospital, crying from the pain and the nurses disregarding my complaints “it’s a normal reaction, you just have to walk around”
Walk around!? Do you realise I can’t breathe and my insides have just been ripped out of me!!!! To make my emotional state worse, I had multiple nurses ask me how many kids I have and if I am planing on having anymore. Obviously they didn’t read my file and assumed given my young age that I just had a minor gyno operation rather than what’s considered major surgery. Either way, this question felt insensitive and was only a reminder of what I have truly lost.
So there I was, finally discharged and going home. But my battle still wasn’t over. Two days after I got home from the hospital my shoulder and chest pain grew worse and after having more than 15 operations previous to this one, I knew very well that this pain was not normal. As time goes on I was meant to be getting better, not worse. My husband drove me to the doctors and sure enough I was right. My complaints were real and the nurses who dismissed me were wrong (this is a recurring issue for people living with chronic illness) My lungs had collapsed! Not only had my lungs collapsed but I had developed an internal infection to top it off. I was also at a super high risk of prolapsing which would require another operation. To reduce my risk of this occurring, I was told not to stand on my feet for longer than 10 minuets at a time nor was I allowed to lift anything heavier than a kettle of water for 8 weeks. This was quite difficult given the fact that I have a 2 year old.
A major operation, collapsed lungs, and a bad infection, all whilst my self esteem is dropping due to needing to use a walking frame just to move around, not to mention the fact that I knew my childbearing days were officially and well and truly over.. without a choice.
My recovery was hard, our house flooded due to a burst pipe, so resting was quite difficult when having to sleep on the living room floor whilst our bedroom is badly water effected.
And five months later, I was back in hospital for another operation.
I had prolapsed. Another damn surgery!
After the operation the surgeon told me that all went well. He fixed the prolapse and removed MORE ENDOMETRIOSIS on my bowel and bladder.
I had a hysterectomy to remove my cancer and endometriosis only to find out that a hysterectomy was no cure for endo.
BUT the cancer was removed, the endometriosis too, and here I stand and tell you that I am 1 in 5.
I am the 1 in 5 who are fighting and praying for a cure. I was disheartened to know that endometriosis was growing back. I was under the impression that a hysterectomy would cure me. Some people have it removed and never need to deal with it again, others like myself with higher staging of endometriosis quickly realise that this is a condition that we will more than likely suffer with for the rest of our life. It’s also a condition that is miss-understood and disregarded by many doctors… BUT,
It could be worse right?
I could have never had that Pap test done, I could have never known that I had cancer, I could have refused the operation and not watch my children grow up. Going through this journey was rough, but this journey is why I am alive today. This journey is why my kids still have a mother and why my husband still has a wife.
Now before I continue on, let’s not forget that I am under the age 30. I will never have the choice to extend my family because that choice was taken from me.
The “it won’t happen to me” attitude is an attitude that can kill you.
As women, we have to endure a lot with our bodies. And sure, you have to sit in the waiting room for a while. Sure, you will have to go through a few minutes of feeling uncomfortable, awkward or maybe even feel a little pressure/pain. But what’s a few minutes really worth to you? What’s an hour of sitting in the waiting room compared to your life?
JUST F*^#ING DO IT!!!
Four out of Five who die of cervical cancer did not have the exam in the preceding five years. Did you know 90% of cervical cancers can be PREVENTED with regular pap smears? And when you do so regularly, you will catch any abnormal cells early on & avoid aggressive stages of cancer and treatments. The risk you take when avoiding your regular test is much more greater than the fear of doing something unpleasant. This risk you take is a matter of life or death, it’s really that simple.
So next time you’re putting your next pap test on hold, ask yourself, what are you really risking?
A few moments of unpleasantness…. or your life?
I wrote this article not only for cancer awareness but also for endometriosis, which I believe to this day is still so misunderstood. I’m tired of hearing stories of women suffering and being dismissed – Listen to your bodies ladies, and demand to be treated seriously. No one, I repeat, NO-ONE knows your body more than you do!
I ask that you share this with your friends & family to remind them that their endo pain is valid, I ask you to share this to remind your loved ones to check when they are due for their next Pap test – it may just save a life.
I don’t want others to go through what I did.
I don’t want those that said “It won’t happen to me” to end up saying and just like I did,
“It did happen to me”