March is endometriosis awareness month, and as many of you know, endometriosis is my unwanted sidekick and has been hands down one of the hardest battles I have ever had to fight in my life.
Many people don’t even know what endometriosis is, let alone how to spell it or pronounce it. Many people, including doctors, think women with endometriosis just have cramps that are just part of being a woman. Many people don’t recognize endometriosis as a significant disease because it only affects women, and it isn’t exactly one of the “sexy” diseases, which is the word I have heard medical staff use time and time again. Apparently, something like cancer would fall under the category of a “sexy” disease.
Endometriosis affects 1 in 10 women (likely more) and takes an average of ten years to be properly diagnosed. Ten years most women with endometriosis have to go before being heard by a doctor. Within that ten years, they have seen several doctors and have had to live with significant pain, heavy uncontrollable bleeding, and exhaustion from the deterioration of their reproductive system and other organs. On top of that, 40% of women with endometriosis experience some variation of infertility.
I had seen five doctors before I finally met one that heard me. I first mentioned endometriosis to a doctor when I was about 20 years old, and he brushed it off and handed me a prescription for a different type of birth control. I can’t even tell you how many kinds of birth control I have been on.
In 2013 the pain started becoming unbearable. It had always been excruciating, but over the years I found ways to deal with it. In 2013 it just became so much worse. When the pain would start, the only thing that would manage it was a boiling hot bath and the fetal position. Around the same time I was blessed to have met two women Shanda and Karyn in the district I worked in, who both had endometriosis. With the help and support from them, I managed to get myself into a “specialist” who, after lots of convincing, agreed to do laparoscopic surgery. I had already seen two doctors in Calgary who had no desire to help me and only wanted to prescribe me with more birth control. The birth control never worked and only made me super hormonal. I had had enough. I NEEDED someone to go in and see what was happening inside of me.
My “specialist” turned out not be a specialist at all and made me so uncomfortable with the thought of him dealing with my endo. He had no flipping clue what he was even looking for, and after asking him how experienced he was, he openly admitted it “wasn’t his cup of tea.” I directed him to only do exploratory surgery and to leave any endo alone. All I wanted was to know what was happening inside.
By the way ladies, you have a right to ask all the questions you want, even if they are about the level of experience your doctor has.
YOU HAVE THAT RIGHT
Following the surgery, I was diagnosed with stage 4 endometriosis. The doctor looked at me while shrugging his shoulders and said “will you have your own kids? I don’t know”. The nurse just about flipped her lid when he left the room because I had barely come out of the anesthetic and he was already delivering me the coldest news.
This was one of the most difficult things I had ever heard, and even after seeing what was going on inside, this doctor still had no desire to help me with the endo and only wanted to mask the pain with more birth control. Nick and I made it very clear to him that we wanted to work towards a fertility plan but he wasn’t interested. Nick recorded the follow-up appointment, and when I listen to it, my blood boils. How can a doctor be so neglectful?
With the right questions and the right amount of persistence, I was able to get him to refer me to someone else. A couple of weeks later I met the first and only doctor who has ever wanted to help me.
She wanted nothing more than for me to feel comfortable, heard, and hopeful that the pain could someday be minimized and a baby could be a possibility. She started a fertility plan with Nick and me, and we were on our way to a hopeful future.
Just 25 days later Nick died, and my plans changed.
My doctor was a god send. She met me where I was at emotionally and physically and told me she wasn’t done with me, but needed me to be healthy (I was not healthy in the early stages of grief) and she needed me to be ready for the road of treatment ahead. We canceled my upcoming surgery and planned to reschedule when I was better.
What an emotional journey to go through with your surgeon.
On February 24, 2017, I had my second surgery where an enormous amount of endo was excised, and my left ovary was reconstructed. Everything was stuck together. My bladder and bowels were significantly effected by endo, and my uterus was an absolute mess. Endo, cysts, scar tissue, and fibroids all over the place.
“Your reproductive system and other organs are a war zone” is what I was told by my doctor.
I remember when she showed me what a reproductive system is supposed to look like and then showed me what mine looked like. The pictures were horrific. How on earth is this ever going to get better? It’s gone too far.
The recovery wasn’t going well. My pain was intense, my bowels weren’t working properly, and I was exhausted. My doctor decided I needed to go on a medication called Lupron that would essentially put me into early (temporary) menopause. This would help give everything a rest so it could have a fair chance at healing. I was not looking forward to this. I knew the treatment was going to be intense, and there were so many horrible side effects.
I wasn’t wrong. It was the longest four months of my life, and I absolutely hated being on it. I gained a ton of weight, I had hot flashes, my bones hurt, I had zero libido, and the pain did not go away, it just changed, but it was equally as debilitating.
Once I was finished the Lupron, I told my doctor I was done. My body needed a break.
I needed a break.
I insisted my IUD be removed so I could focus on a more holistic approach to pain management and give my body a rest from all of the hormone treatment.
I had told her about Scott. She asked me what my plan was. Pain management or fertility. I told her 100% without a doubt that my goal at this point was pain management. I had goals and plans that did not leave room for a baby, and right now I just wanted less pain.
When she removed the IUD, we decided we would work on pelvic floor therapy and diet.
By the way, diet is so important with any health issues especially inflammatory diseases. It’s something you should strongly consider focusing on. I am no expert and I struggle with cutting out foods and alcohol that I love but it’s so incredibly important.
I had to wait until March to start the pelvic floor therapy because Blue Cross cut me off benefits as I wouldn’t sign the form excluding endometriosis from the coverage.
That’s right Blue Cross would not cover anything involving endometriosis.
After my doctor removed the IUD on November 29th, 2017 I walked out the door relieved that it was finally just me and my body.
42 days later I found out I was pregnant. We weren’t planning it, but at the same time, we weren’t exactly preventing it. I don’t think either one of us believed it was possible anyway after all my body had been through. To say I was shocked is an understatement.
Here is the truth.
I am beyond excited and blessed to be pregnant. I still haven’t fully processed this to be true because in my mind it just wasn’t likely to be in the cards. I had accepted that not long after Nick died. It was something my therapist and I worked through regularly. I finally became okay with the fact that my life might be about something else, and that is okay.
The terrifying part to this is that my reproductive system and I have never had a very solid or loving relationship. I consider it one of my demons, and it is now the home of my baby.
It is hard to explain to those who don’t have endo how this feels but those with endo know exactly what I mean. This area of my body that has created nothing but grief for close to fifteen years, is now in charge of the development of my baby.
I am so blessed. Thus far the pregnancy has been smooth aside from some intense exhaustion. I am 13 weeks in, and the baby is exactly where he/she needs to be.
The other day I found out one of my uterine fibroid tumours is growing larger and it may have potential to block the cervix. If this is the case, I would be forced to have a scheduled C-section. As frustrating as this is for me, someone who wants nothing more than to experience a natural birth, I have to accept it and just hope for the best. I have to be thankful that at least we know now and not when I am in labor.
I have read that foods high in enzymes can shrink fibroids so this will be my focus. Again, diet is so important.
I have experienced years and years and years of excruciating pain with no reward. I want to experience the pain, with a reward. Many of you know exactly what I mean.
However, if having a C-section is the only way to make the birth safe than that is what will happen.
This is a long entry, and if you have made it this far, I assume you are someone who needed a bit of hope.
Please never give up on your desire to have a baby. No matter what you are told, never give up. I have been told by at least three doctors that it just might not be possible and even the doctor I consider an angel wasn’t overly confident it would happen for me either, but she wasn’t going to give up.
“I will never tell you-you can’t get pregnant unless I know for sure,” she said.
These words stuck with me.
This baby is a miracle. I will hold on to the positive vibes and love from everyone patiently waiting his or her arrival.
I am aware things can happen, and tragedy is never too far away, but right now I am focused on staying healthy, stress-free (as much as I can), and excited.
To all you women who have endo, or any other complicating disease or condition that is causing you to lose hope;
I see you, and I want nothing more than for you to experience that positive sign on that stick, and I will walk with you until it happens and if it doesn’t;
You are still a warrior for having gone through this.