October 24, 2019

My Journey with Endometriosis

FILED IN: Personal

I’ve had this written out for months now…but didn’t want to share it until I knew it was “real”, isn’t that silly? All this time, all this pain, not being able to get pregnant- all very real things- that I have been going through the past couple of years. But it took me lying at home in my bed with four little incisions in my abdomen, and a concrete diagnosis, to have the guts enough to share my story…

Infertility

It all starts with, “When are you guys going to have another baby?”, the question I’ve been asked on an almost daily basis for the past 3 years. I usually just smile and recite something along the lines of “Oh, someday soon”. To most people it’s probably a harmless question… but for women like me… it’s an extremely heavy one. One that I dread having to answer.

But who am I to talk about about disappointment and longing when I have a beautiful, healthy little girl running circles around me every day? I have been hesitant to share my feelings on this topic because I know that there are so many of you out there who are struggling with infertility and have not yet had any children, or have endured painful miscarriages or still birth. I don’t know you – but my heart aches for you. I will never know your pain or what it’s like to walk in your shoes. I don’t know that I could ever speak into your life or offer any advice.. but I can say that I whole heartedly believe there is purpose in your suffering. And I pray that God will bring you comfort and understanding some day soon.

But I also think that there may be some of you reading this who are walking a path very similar to mine. Maybe you feel guilty like me. How could you ever complain about what you’re going through when there have been so many women who have endured so much worse? But I’ve come to learn that while your pain may not necessarily look the same as someone else’s … it doesn’t mean it’s any less real or important.

I may have a beautiful little girl of my own, but I too know what it’s like to long for a baby. To count down the days until your next pregnancy test. I used to be the girl at the doctor’s office who couldn’t remember the first day of my last period. Now, I have my entire last year of menstrual cycles mapped out on a calendar and saved to my phone. I even have this fancy app that tells me my most fertile days, when I will start my next cycle, and the soonest day I can take a pregnancy test.

I know what it’s like to be genuinely happy for friends and family who are getting pregnant, and yet still feel that little ping of jealousy that it’s not me (in creeps guilt again). I know what it’s like to tell myself that I’m just going to wait and see if I’m late before buying a test this month… only to then go out and impulsively buy one a couple of days before. And then not know if I got a negative result because I’m truly not pregnant or if I just took one too soon. So then a couple of days later take another test, and sometimes another one the day after that… only to eventually start my period. Every. Single. Month.

Endometriosis

You’re probably wondering how I’m even struggling with fertility if I already have a daughter. Heck, I know I did. I literally got pregnant with Anabelle the first month we started trying… so what happened this time around? I guess I’ll start from the beginning.

Teenage Years

We are taught from girls at a young age that period pain is normal, but at what point does pain stop being normal? I  can remember sitting in the room with my mom as a teenager and telling my lady doctor that my cramps were so bad that I couldn’t get out of bed. She just told me to take more IB Profen up to 800 mg at a time. So the first few days of every month I would be stuck in bed with a heating pad, taking 4 pills every couple of hours thinking every other girl was doing the same thing. Ever since I can remember, I have gotten these random shooting pains that come quickly (lasting less than second) and then shooting up my bottom/through my lady parts- but so strong it literally takes my breath away. Sometimes when I sneeze, especially while on my cycle, I get that same exact sharp pain. And the first time I got a pap smear I literally cried. I thought it was just because I was so shy and uncomfortable in the moment, or that I had a low pain tolerance…. but now I know that wasn’t the reason.

Married Life

My husband is the only man I’ve ever been with, and since we waited to sleep together until marriage, I really didn’t have any idea of what to expect. Everyone always tells you that the first time can be painful, so I didn’t find it odd that my experience was “uncomfortable”. It wasn’t incredibly painful for the most part – there was just this intense pressure that didn’t go away and a sharp pain that came from certain positions (I still feel those things even today) . But a couple of days later I ended up having incredible stomach pains and couldn’t get out of bed. We were on our honeymoon in Mexico at the time and everybody warns you to not drink the water and things like that, so Jason and I just thought I must have caught something. Jason would have to go out to dinner by himself and bring me back take out boxes just because I would have to stay in bed with these horrible abdominal pains. It got so bad at one point that he actually started wandering the streets of Mexico, trying to find anyone who knew where the nearest hospital was (because no one at our resort knew). Needless to say, my symptoms put a quick hault to any sort of romance in the bedroom, and within a day or two (coincidence ?🤔) I was feeling normal enough to make our flight back home. Looking back on it all now, I truly feel that all of it was actually my endometriosis pain.

Discovery

I can’t really complain that I wasn’t taken seriously over the years or wasn’t listed to… because honestly, I didn’t even take myself seriously. I just thought that everything I was going through was normal, something that every woman struggles with. So in a way, I was my own worst advocate. It wasn’t until after I had my daughter, Anabelle, that things started to change and I started questioning what was normal. I never got on birth control after she was born, but once she turned two years old we decided that she was ready for a baby brother/ sister and actively started trying for baby #2.

Infertility

A couple of months went by with no results and I started to feel like something was wrong. We got pregnant so quickly the first time around that I just didn’t understand why I wasn’t pregnant yet. I downloaded a fertility app and planned out my most fertile days. I started taking fertility supplements and eating extra healthy. I bought fertility books, read other women’s stories and eliminated almost every toxic chemical from my life. From my toothpaste to my deodorant, to my shampoo… it was all natural and organic. But nothing worked.

Diagnosis

In pursuing a healthier lifestyle, all the while, my symptoms started to get worse. On those first couple of days of my cycle every month, 800 mg just wasn’t enough anymore. It used to be that, that much IB profen would take my pain almost completely away, but now it only lessened it. And when I’m standing it feels like there is a 100 lb weight pulling down inside of me, putting pressure on my pelvic floor. No amount of medicine really helps the pressure, and the only time I feel relief is when I can sit down. Which is pretty hard to do with a busy schedule and a toddler running around you all day long, in case you were wondering. And while I used to really only have pain during my period, I started experiencing this dull/achey pain in my lower back/abdomen all month long. Its nothing I need to take pain medicine for, just something I never felt before.

Around the same time I started seeing adds on the internet and commercials on tv about this funny disease called eEndometriosis. All of the symptoms sounded oddly similar to what I was going through. So I brought it up to my lady doctor who told me to see a specialist. I was told it was very likely I had endometriosis but there was no way to diagnose it without surgery and even then, there as no cure. I was scared and overwhelmed and wasn’t ready to go after the answers I needed. But affter about a year of increasing pain, many more friends/family pregnancy announcements, and troubles arising in my marriage… I was finally ready for answers. I wanted the best of the best and found myself at UF Health Women’s Health Center in Gainesville.

I actually went to see a fertility specialist initially. While my doctor was very kind, I could tell she didn’t think there was much wrong with me at first. She asked questions like how much sleep I was getting, how busy my lifestyle was and explained just how much of a toll stress can take on the female body. I almost went home that day without any tests, but since some of my symptoms did point towards endometriosis she ordered an ultrasound last minute. She warned me that in most cases, endometriosis is only found superficially with no real mass or color that can be detected by ultrasound, and that even if I did have endometriosis it was unlikely to show up. But I can remember the room going quiet and her face turning more serious as she looked at the monitor. She found a cyst in one of my ovaries and some lesions on my other ovary (growth deep in my tissues) that was highly indicative of Endometriosis.

After that I was referred to an endometriosis specialist. My new doctor specializes in lacroscopic/robotic surgery to diagnose and treat Endometriosis and other complex female diseases. Upon physical exam I was told that I had Stage IV Endometriosis and that he was quite confident that endometrial tissue had created adhesions, from my vagina to my rectum, and likely on other organs as well. Basically my insides were all stuck together like someone took crazy glue to them. At this point it was no longer a question of wether or not I had endometriosis, but how bad it actually was and what I wanted to do about it?

Something I have thought and prayed anxiously over for many months now.

Surgery

Yesterday, on October 23 2019, I finally had my surgery. I will leave all of the specific details for another day and time (I hope to write another blog post dedicated entirely to my diagnosis and another to my surgery specifically) … but here I lay in bed with four little incisions and the official diagnosis I’ve waited so long for. It took 6 long hours but my doctor was able to remove the cyst, separate the adhesions, and clean up all of the scar tissue. I was still groggy from anesthesia when I awoke, but he told my husband that my ovaries and Fallopian tubes are all cleaned up and look great. I’m feeling a little more sore than I was expecting to be, but the pain comes with a weird sort of satisfaction. It’s like a physical reminder of all the change that has taken place inside of me- and I could not be more hopeful or excited for what the future holds.

My Reason

My hope in sharing all of this, is that perhaps other young girls/women my age who are having these intensely painful menstrual cramps, pain during intercourse, infertility etc. will hear my story and think hey, maybe this isn’t normal?

I am normally a very private person by nature… so I haven’t even shared most of these things with my friends and family yet. Maybe some of you may think I went into WAY too much detail. But I can remember not knowing what was wrong with my body and pouring through page after page of other women’s stories on the internet. I would spend hours reading, desperately searching for any symptoms that sounded similar to mine. And as uncomfortable as some parts may have been to share, I know from experience just how important all of those little details can be to someone like me.

I feel like in the past, reproductive illnesses such as PCOS, Endometriosis, miscarriage, still birth and infertility have remained a secret for women to bare silently on their own. I am so thankful to all of the brave, strong women who have opened up their voices and shared incredibly raw stories. They pave the way to healing/answers for the women walking the same journey after them.

I can’t help but feel that God gave me this story for a reason.. and instead of being quiet about it, I’m here to share my story too. I hope it helps.

 

 

 

 

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