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 💕

My Endo Journey Pt 4

With my second surgery we learned the lesions regrew on the back of my bladder, my ovaries were covered in scar tissue and more lesions were speckled around. The disease is progressive and will just keep getting worse. No wonder it felt like a knife was in my back, the spots were literally compressing my nerves at the base of my spine. 

After graduation, I finished my internship at a casting agency and was hired as the retail manager at Broadway Dance Center. They were really great at being flexible for auditions and taking class from their incredible teachers. You could be standing next to Bebe Neuwirth at the ballet barre, and it would be just a regular Tuesday morning. I took Frank Hatchet's jazz class nearly every day - being one of his chosen assistants to demonstrate combos - it was a big deal in our world. He was so kind and uplifting. He was tough too but in the best way. I assisted their Radio City Rockette experience at Radio City Music Hall - teaching young dancers the routines and getting to step out on that incredible stage regularly. I must've auditioned for the Rockettes half a dozen times; going thru 10 rounds and getting cut one round before casting. We'd be there for hours watching thousands walk right out the door each round. Every time I would get so close to landing it. I helped develop their student visa program that brought dancers from all over the world to study from the best in NYC. It wasn't enough to pay the high rent in NYC though, so I would bartend a few nights a week as well. 

After a year it became apparent that I couldn't do it all. Full time job, auditioning full time, bartending at night, and the flare ups I had to push thru and keep moving. I'd be lying on the ground in my office writhing in pain one minute and up working the store the next. My work and my dancing were suffering so much.

I danced with the NYC Cheerleaders, Off Broadway Productions, I toured with a Latin Jazz Company throughout the Tri State area as well as overseas in China, and helped fellow alumni produce and dance in their choreographic work. We often had no money for dance space so we would rehearse in Central Park or someone's apartment. Those were some of my favorite days ever.

The years start to get a bit blurry...

My life became a revolving door of auditioning, gigs, quit job, perform, find a new one.  I would bartend until 4a and be at a cattle call audition at 8a. Every time I got a dance gig it would conflict with my bartending job, so I'd have to quit and start over. I can remember 13 different dive bars, trendy restaurants, or clubs I worked at during those 5 years. 

And there was always a local bar around the corner where industry people would go after their shift to wind down. The problem with living a life of chronic pain and flare ups is that when you feel good you don't wanna stop, because when you do you know you gotta start all over. Body is stiff and in pain, so just getting moving in the morning was a game of willpower, many times I'd stay out until it was time for the audition. Just to try and ride that high of feeling good because I knew if I rested even for an hour, I either wouldn't make it, or it would take so much strength to start moving again I'd be useless at the audition. But I was going up against the best at my worst; vying for a couple spots - either way I was up against a brick wall trying to get over it - begging to just have an even playing field. 

I felt too damaged for love. I honestly believed my body would never produce children, and I had come to terms with that a long time ago. I thought I would never find a partner to stand by my side and go through so much; and then have to accept the possibility of being childless. I often fantasized of adopting a child in my (late) 30's, dancing on Broadway, no man needed. I was reckless at times and put a wall up sky high. I didn't let anyone in, and when I started caring for someone a switch would go off and I would destroy whatever relationship I had built.

I was angry and sad; I grieved the life I had when I was pain free and I grieved the life I wanted but felt impossible to be mine.  

I tried every type of birth control - the no estrogen one, the low progesterone one, the one in the pretty purple box. They would all stop working after a while or cause crazy side effects. Eventually, finally something new came on the market - the nuvaring inserted like a tampon it gave me the relief from the time sensitivity of a pill, but they needed to be refrigerated until used and that made traveling difficult. Not to mention an awkward conversation for new relationships.

I'd plan my doctor appts around holidays and after gigs so I could go home and manage the disease with my team there. I'd get a new birth control option and a script for pain medication. Every doctor and ER I went to in NY would just placate me or worse gaslight my pain and call me a drug seeker. Dr Sauer was my life force and kept me functioning. I don't think I would have survived that time without his care, empathy, and support.

You can see what kind of man you are dealing with when you see how they handle women's reproductive issues.  If they don't grab your hand and walk in that doctor's door ready to be educated, to be your advocate, to be your rock - he's not the one. Life's gonna get messy regardless and you want someone who doesn't shy away from talking about periods and your uterus. Guys had ALOT to live up to because my dad did all those things without batting an eyelash. I could talk to him about anything, and he took it all in just wanting to help me thru it. I was enamored with romance and adventure, but I would never allow myself to fall in love. I was too damaged, too broken for lasting love. We had a term for the guys who got too close - that they had been bitten by the love bug and it was time to go. If I cared about a guy friend who wanted more, I would panic, and friend zone them. Knowing I would ruin our friendship if we tried to date.

9/11 changed me too. I struggled with unrealized PTSD and survivors' guilt for years before I got the help I needed to process it. 

I started auditioning less, bartending more; and I found alcohol took the pain away better than anything. I was coasting in this cycle determined to "not let them win" but I was miserable and losing myself. I enrolled in a Pilates certification class trying to get away from the bar. It was 100's of hours I had to do without pay so I was back to working full time and bartending at night and trying to audition.

In 2003 I went to South Africa with friends to see their beautiful country. We road-tripped around for 6 weeks. It was the first time I had left NYC for an extended period of time in years. It was exactly what my soul needed. 

 

The sky felt massive and I felt so tiny in the universe. You would think it would swallow you whole, but it was the opposite. I felt free from the weight of expectation, pain, grief; and space opened for my heart to be heard. I'd often wake up early and just sit outside staring at the stunning world around me. Looking over the vast beauty one morning, with all the noise and distraction of the city finally melting away I suddenly came to the realization that I had kicked out that whisper from my heart. I was no longer following my bliss and I knew that if I didn't leave NY it would be 10-15 years down the road and everything I had sacrificed and fought for would've been for nothing. Dance felt trivial to me and this career I was holding on to for dear life seemed like a silly whimsy of a naive girl. I had lost my connection to the meaning and the power of art to heal, to challenge mindsets, to process emotions. 

My friend Lu, who had come into my life at just the right moment. She saw life with such raw clarity, and she challenged me to be better. She is still one of my favorite people to this day and someone I can always turn to when my heart is struggling. Her perspective always has a way of guiding me thru whatever is troubling me. I told her my plan and there was this wave of peace that overcame me. I knew it was right and upon my return started making my plans to leave. Not 8months later I was back home in Michigan in my old bed pivoting my life to Chicago. Michigan was never an option for me. My small town always felt suffocating since I was a little girl and Chicago was always my final destination in my head. Big city but close enough to go home whenever I wanted or needed to. 

A year after I left for South Africa, I was moving into my new apartment in Bucktown; I didn't realize it then, but I'd never step into a dance studio for a class again. I felt free of it and even though I told myself it's just a little break, dance didn't serve me anymore. 

The pain was getting worse. I only had 2 close friends in Chicago at the time. I had met Christian out in LA thru mutual friends, when I was auditioning out there. He had moved home to Chicago right before me. We clicked instantly and I was lucky to have him there. We'd go out to dinner at great restaurants, be each other's 'standards' for any event we needed a date for, but we weren't dating. We were best friends. I told him everything I had been thru with this disease, my fears of being childless and never finding love, feeling too damaged and broken to be loved or to love anyone. He listened to it all and he was a safe place for me.

One night we were at the Ritz Carlton having drinks at the bar and he looked at me and said he didn't want to be friends anymore. A little confused, he went on to say that he loved me and wanted more, and if I didn't then our friendship would be too painful to endure. I didn't say anything, frozen a deer in headlights and I excused myself to the ladies room without giving him an answer. I looked at myself hard in the mirror, unable to deny my feelings for him any longer but so scared I'd freak out if we started dating. But I was tired of running from love. I knew if I said yes to him, that I would probably marry him one day.

I walked out and fell into his arms, kissing him and saying yes. It was one of the best and scariest moments of my life. We had planned a friend's trip to Pittsburgh that weekend to see Dave Mathews and it suddenly turned into our first date. Travelling was something both of us loved and it was the start of a beautiful journey. It was so easy and being together didn't change one thing about our friendship. A month later he went to Michigan with me for my 3rd laparoscopy surgery. I was out of it after surgery and don't remember a thing, but I was told he walked right in and took a seat looking at pictures of my ovaries and insides with my parents. 

He didn't bat an eyelash. 

I knew then just how special he was and that maybe I ran from love because my heart was searching for him.

My Endo Journey - Pt 3

This time the pain would not be going away like the first time. But the surgery took me from a base line pain level of 6/7 to a 2/3. 

You can function at a 2/3 and so we went back to the continuous birth control. Back to writing another letter justifying why I needed such a "drastic" prescription. I got really good at sharing my personal health journey with strangers.

The biggest problem with manipulating your period, though is that you are forcing your body and hormones not to shift as they naturally would. So if I missed a pill by a half hour my pain level would jump to a 5 by nightfall. And if I forgot all together I'd go down for a few days my body unable to adjust so rapidly to the shift in hormones. Getting a script of Vicodin during these years was as simple as calling my dr in Michigan. I had his office on speed dial.

After my surgery I could focus on regaining my strength, and playing catch-up to the other dancers. I had fallen behind in skill and was struggling to keep up. I did an eight week summer intensive at Alvin Ailey that summer; trying to get back on track. It was an incredible experience dancing in those studios amongst such history, immense talent, and incredible teachers. 

But in what would become a constant circle, the endo would flare up and I would hardly be able to move let alone rollerblade clear across Manhattan from the upper east side all the way to the Ailey School. So I didn't catch up as much as I needed to and yet my dance director still advanced me. Maybe out of pity or maybe because I wanted it so desperately - naive of what the constant comparison and feelings of inadequacy would do to my confidence. 

My body also had changed dramatically. We were messing with my hormones so much from the chemo they injected me with for 6 months and this constant battle my body was fighting against the birth control; it was all bound to have some effect. I went back to healthy albeit still incredibly thin weight but my chest had grown from a small B cup to a D cup. It threw my center of balance off and it was nearly impossible to relearn. I couldn't turn well, my jumps were heavier. My body felt foreign to me. 

I didn't know what endo belly was at the time, but now it makes sense. One teacher would literally pat my belly and say 'oh i see that bagel you had this morning.' It was embarrassing and also infuriating because I would be so swollen that food was the last thing I could stomach. I drank slim fast to lose the belly weight and it was the only thing I could get down some days. 

My grades in my dance classes suffered. We were graded on weight and despite being rail thin with a bloated abdomen I never got above a B-. Because of it my gpa dropped. The dance director told be in my "final" senior interview that 'my tits and ass might get my a job, but my dancing never will.' I was devastated by that. I can still feel my heart falling into my stomach, holding back tears just to get thru the rest of my interview.

I was the first person on either side of my family to graduate from college - I wanted it to be with honors, but I was 0.1 away from magna cum laude. I wonder if I had been properly placed in ballet class, would I have been graded so harshly? Instead of feeling the disappointment in the harsh and ignorant grading and emotional abuse, maybe I would've felt like I had achieved something huge against all odds? Would that perspective have altered my mindset? 

------

#endometriosis #womensrightsarehumanrights #proroe