My Endo Journey Pt 5

Our first date was a Dave Mathew's concert in Pittsburgh and it was the beginning to one of the happiest seasons of my life. We road tripped to California and back, took a train ride to DC for the fun of it, would fall asleep in the grasses of Millennium Park on a sunny Sunday morning, and perfected our couple selfie game before phones had cameras or the word selfie existed. 

But the pain was always there in the background; the continuous birth control keeping it caged. During my 3rd laporscopic surgery most of the lesions were gone from the back of my uterus. My left ovary had regrowth and adhesions had formed between my ovary and Fallopian tube. The ligament that attaches my uterus to the sacrum had lesions lined up in a row like tiny soldiers separated only by more adhesions. Those spots regrew too. 

Words like ablation and excision were not part of the conversation for me through most of my endo journey. What I remember of my laparoscopies were compassionate doctors who HEARD me. Doctors who did their best to help me. 

I look at my surgical notes now and I cringe seeing vaporization, recurrence, induced menopause. Because this was the ONLY treatment available to me then. And I know now that had they been versed in the advantages of excision; they may have eradicated the disease from my body all together before all the damage it caused. My then newly declared boyfriend saw this report and new that pregnancy was still not a given for me. He loved me anyway. A year later he proposed and in July 2007 I married my best friend.  

As the only treatment available I went back on continuous birth control; suppressing my hormones - they thought this helped because whatever they didn't get during the cauterization would surely be "starved" with 6 months of no periods, right? Wrong. That's not how it works. But if ur not bleeding then the lesions aren't growing. So I transitioned to having periods every few months to maybe once or twice a year. And my beloved doctor in Michigan left to head the department at Yale. 

I was back to searching for adequate healthcare, now in a city where I knew virtually no one. And knew no one struggling with the disease. Most doctors are uneducated when it comes to endometriosis. There are specialists in MIGS, but just because someone chooses to become an ob-gyn doctor does not mean they have the education, empathy, or understanding of these diseases to give adequate healthcare. It was like finding a needle in a hay stack. 

Even with my surgical records it took many appointments of doctors telling me that; 'it wasn't that bad'. I heard unless I was ready for fertility treatments I wasn't worth their time, and the worst was a guy who made me sit there with my shirt around my waist while he told me the dangers of pain medications. It was so creepy and weird, and I couldn't believe i did it. But in the moment i was so desperate to find my new doctor that I didn't even question it until i told my husband and he got upset.

I never knew when a flare up would hit or a cyst would rupture like it did once in Vegas, forcing me to travel home early to get to my pain meds. It was useless to go to an ER there because they wouldn't help me. 

It got harder and harder to get Vicodin for the pain. The opiad crisis had hit and all of a sudden it didn't matter that I had managed these medications responsibly since I was 14. It didn't matter that I needed them to manage the pain; you couldn't get them anymore. The options they gave didn't touch the pain and were a joke. 

Had these amazing doctors I had found when I was so young knew they could eradicate the disease from my young body, I know they would've done it. That is a devastation that I can't put into words. 

Simply burning the lesions damages the healthy tissue surrounding it, there's nothing left to send to pathology, and you cannot be certain you went deep enough and got all the cells. Vaporizing is slightly better by steaming the cells until they evaporate so less damage but you still have nothing to study and ensure it's not cancer and you still have no idea if it's completely gone - the majority of women who have ablation surgery will see regrowth and pain within 2-5 years; some a few months later. My pain was filled but never went away again completely. There was too much scar tissue and adhesions.

Excision cuts the disease precisely and is the only way to ensure no damage is done to the healthy tissue surrounding it, they can send a sample to pathology to confirm, and can remove the cells all together ensuring there is no regrowth - at least in that spot; cutting down on inflammation and scar tissue forming adhesions. Adhesions are when scar tissue inflames the tissue so much that rings called adhesions begin to form attaching to the surrounding organs. The scar tissue will take the damaged tissue and whatever it is touching and bind them together. 

The first recorded medical journals date back to the 1890's when a dr found lesions filled with blood similar but outside the uterus. The treatment then was to open you up and cut that shit out. In the 70's/80's laporscopic surgery came around and based on no research the prescribed treatment was to take these fancy lasers and burn it out. Great that women didn't need a 10" scar across their abdomin but shitty they decided to burn the tissue without any medical research or proof this did anything. 

This became THE ONLY TREATMENT for endo until decades later. And the reason almost everything doctor will state that endo has no cure - because unless they are educated in MIGS and understand the superiority of excision surgery; they're right. Endo will never be cured.

But I digress, our courtship and first years of marriage were a whirlwind of love and travel, but also an urgency to start a family. I always had this voice in the back of my head louder than the rest saying 'you've got til 30' and I also knew that we wouldn't be able to go right to IVF.

I finally found a dr at a fertility clinic who would treat me knowing that we were not ready yet but would be soon. My first appointment with Dr Caruso was one the best experiences I had had since finding my doctors in Michigan. He sat and listened to my whole story. Two hours later he was reassuring me that he was there for me and that he would be our medical partner thru the next phase of my life. 

So we made a plan, I stayed on continuous birth control having as little periods as possible and after only 6 months of marriage we began fertility treatments. There are rules and even with my history I had to jump thru hoops. And after several failed IUI's, fertility drugs to jack my system, suppressing my period to control when I was fertile - you learn very quickly that getting pregnant is closer to a science experiment than some holy gift. When that failed and I had too many cysts and polyps they gave me a rest and we finally got to IVF.

I didn't struggle as mentally or emotionally during this time as you would think and probably what most women who've been thru this process did. I felt strongly that the only way I would ever become pregnant was thru IVF. I was told that since I was 14 and I believed it thru and thru. I had come to peace with that from a young age and told myself I was fine if it didn't work, but if I'm being totally honest I'm not sure I would've been ok had it not turned out the way it did. They call it an invisible disease because you can't tell from the outside your in pain or see the damage happening. Most women find out they have endometriosis when they can't get pregnant. But regardless of your mental state going into it: the process is hard; mentally, emotionally and physically. 

They suppress your hormones with the Depot Lupron shots they gave me at 20years old, so they can then Jack up your hormones to produce as many eggs as possible. This would be the 2nd time I went thru induced menopause. Man I hate that drug. But I had to do it and every morning Christian would try to find a spot on my abdomen that wasn't bruised already. We finally made it to harvesting and we had so many eggs it seemed crazy. We celebrated the day they extracted them and combined them in the hopes of forming embryos. I don't remember the exact number now; it's funny how you are so in tuned with every hormone level, number, speed, etc... that you feel they are engrained in your memory forever. But I think the mind knows better than to keep track of things like this. 

You start with say a dozen embryos and each day you wake up and call and find that number dwindling. It's extremely hard to stay positive but you remain hopeful. Until hopefully you land somewhere with at least one viable embryo they can implant back inside you. We thankfully had several.

They shoot you up with a super dose of hormones 24hours before implantation. I was in my friends wedding that night and by the time the pictures were being taken I had ballooned up 20lbs in literally a few hours. My dress cut into my arms that was once loose (I had gotten it big knowing this would happen) and the next morning we were off to get pregnant. 

They grade the embryos on their viability and you sit in this room and must make a decision. If they are not strong enough to freeze then you have to either let them go or take the chance they will survive against the odds. But you also must accept that whatever number of embryos you implant could all take - so if you implant 4 you must be prepared and accept the risks to carry quadruplets. It's not an easy decision. And if I truly believed that a soul comes into existence at conception then I'd be heartbroken for the souls we lost before we were ever even physically pregnant. That doesn't feel right to me. I don't know when a soul joins a physical body but I do know it's not then. 

Just 10 days later you go for your first ultrasound. They urge you not to take pregnancy tests because of the hormones causing false positives; so we waited. We had no idea if we would have multiple babies, one lone survivor or none at all. Christian held my hand as the technician was quietly beginning the test. He made a joke about it looking like an alien with 2 big black eyes - then he caught himself and asked if those were 2 babies. The tech laughed and said yes; you are having twins. We were ecstatic and scared and so so excited it worked. And even though they had been implanted 10 days prior; I was 8 weeks pregnant. 

We hugged and cried and I called my mom to tell her we did it. My pregnancy was a huge success for us all and had my parents not taken me seriously all those years ago I fully believe our miracle babies wouldn't exist. Early diagnosis and management made this possible for me and they were a huge part of that. The dreams my mom and I had from 14 years old were happening and we were all so incredibly happy.

I was 30 years old and pregnant. With twins 💕