My Journey with Endometriosis.
So I assume most of you are thinking what the heck is endometriosis! Any time I tell anyone about this, they have never even heard of it — ill start by giving you Mayo Clinics definition.
Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs
With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.
Endometriosis can cause pain — sometimes severe — especially during menstrual periods. Fertility problems also may develop.
I got my period when I was maybe 12 or 13. I was in the 7th grade, and I think all my friends got theirs before I got mine. Lol, I know my sisters did. I would say life with my period was preetttyyy regular till about after I graduated high school, I don’t remember me being in any pain throughout my high school years. I was super active I was a competitive cheerleader, so I was always tumbling, running miles, conditioning and I don’t ever remember not being able to do that. I can’t even pinpoint exactly will this pain started but I know after I graduated and moved on to college cheerleading when I got my period and I had a practice I didn’t want to do ANY physical activity because I would feel like my insides were continually ripping out of me. Most of my teammates would be like do your backhand spring or tuck it’ll help the cramps. Usually with cramps they say any sort of physical activity would help but, It never did, and id be in more pain then what I started with.
This monthly pain went on for years. I kind of just learned to deal with it and when I mean deal I mean be in bed not being able to move for one week a month I’m talking about excruciating pain. I didn’t want to eat, drink I couldn’t sleep all I could do is just lay there. I’d get up in the middle of the night to use the restroom and be near faint, chills, getting hot sweats, all only from standing. Anytime I brought it up to friends they’d say oh yeah I get cramps too, but in my head i thought but do you feel like you’re dying every single month because that’s how I felt. There were so many times while lying in bed I just wanted to call 911 because I knew it couldn’t have been normal?
I couldn’t fully explain my pain to anyone, I would tell my mom, and she would say I was dramatic, I mean I AM A VERY DRAMATIC human being, so I don’t blame her. I’ll never forget eddies face each month we were together. He just sat there watching me roll around my bed in pain, he would ask if there’s anything he could do to help, but there was nothing I COULD EVEN DO.
But Lets fast forward a bit. I’m skinny now but back then I think I only weighed like 110 lbs and while I was in the shower sometimes i’d look down and think hmmm… did I always have kind of a little bulge under my belly button. But I just blew it off, and I think eventually I was like maybe I’m just gaining a little weight which isn’t bad, I didn’t really think anything of it, but I know my body. one day I was doing yoga laying on my back, so my stomach would normally be completely flat but I looked down, and it wasn’t it looked like there was a giant ball in my pelvic area. Immediately I got up spoke to my parents and called the Dr first thing in the morning, and I think they called me in for an appt that day. They were just as worried as we were.
At first, they weren’t sure what it was, but they knew it had to be removed. My OBG/YN referred me to a specialist, so I switched Drs. Had surgery was diagnosed with endometriosis. Which they can’t diagnose without have gone through surgery first.
During that surgery I had the endometrioma mass removed, my appendix and partial left ovary, partly because some of the tissue was stuck to one of my intestines and they would call for a whole different surgery — all at 23 years old. So what I went in for turned out to be a bit worse than expected.
After recovery, I went to appts and talked to my Dr. and he expressed to me how because my endometriosis was so intense and how my bodily figure is so small I would have issues with having children but not to worry because at the time he asked me if I wanted to have kids and I said no. So he agreed to tackle the issue when I was ready.
So following surgery, I was required to have ultrasounds every six months to watch the growth of endometriosis and be to be birth control to handle the cramps and slow the growth process of the endometriosis. The first round of birth control I tried didn’t regulate with my body; it was like I ALWAYS had a period, pains were gone, but I was always bleeding. At one of my appts my dmDr. Changed it because he decided maybe having fewer periods would be best for me so this next birth control I was on i was only supposed to have a period for three months out of the year, and again that didn’t do well at all with me. Even my cramps were coming back.
During this appt is when i also found out this monster of endometriosis was back at it again but this time is was spreading around my bladder, luckily not on the inside but if it kept going at that rate i would need another surgery. In order to prevent surgery i was offered monthly injections to trick my body into thinking it was in menopause…. at 24 years old newly married i’d be going through menopause. I was totally freaking out at this point.
Somewhere in all of this Eddie and I got married, and I think about two weeks after my appt I moved to Fort Walton Beach. With a new move comes a new Dr. which I was so devastated and hesitant about, not only was I leaving the person who was with me from the beginning and performed the surgery he knows about my condition better than anyone. If there ever was a guest for my Dr. Id the get “omg you’re so young, poor girl” type attitude when every single day I’d fight myself mentally not to feel that way. only to fo medical professionals and they say the same thing it makes you lose hope.
When I moved to Fort Walton, they didn’t want to give me the injections because I was so young they gave me a sort of last resort which was the Mirena IUD, and up until the day we decided to start trying I had it in. Honestly, it worked so well for me, and I had no cramps that I was afraid to take it out. After about 2 years of trying to see what worked THIS FINALLY DID.
For the past four years every single day I thought about my endo, every day I thought about not being able to have a child, the idea of trying scared the crap out of me… I cried to Eddie so many times I told him how terrified I was, just going through the whole process of what if. I think I only really talked about having kids to my closest friends because most of the time i’d tear up talking about it. I had already gone through so much mentally and physically when it came to my reproductive system. Eddie would tell me not to get so worked up over a what if. He was always so positive and supportive. I just had a lot of odds against me; I have an older sister with a similar condition with two ovaries who struggled to get pregnant, had a few miscarriages who kind of told me to prepare for the same. I knew what I had been fighting mentally for years and add actually trying into the mix was just a no for me. Mind you, I have never left a Drs appt with good news it’s like I learned to expect the worst.
But still Even with all this after slot of discussion one day Eddie and I decided to tackle it head-on, we knew that we’d be in it together and everything happens for a reason. When we took the IUD out the dr, told me that if I wasn’t pregnant in 3 months, we’d have to look at other options, but because I have endo, I can’t get any of the fertility treatments offered here. I was told before we start to try, I need to have an X-ray to make sure my tubes didbt have blockage from scar tissue, which they would most likely have from my previous surgery, and if they did id have to get another surgery before we begin.
At this point, I was exhausted, Physically and mentally and over being at the hospital, I had just healed from an umbilical hernia surgery that was caused by my previous surgery, and I was completely over it. I told Eddie ” ill just go when I’m ready.” I told myself its all in Gods hands, and there’s nothing we can do about it, guys I was never ready. I decided not to go, I think I was just scared of bad news again. I just kept pushing it back. So not three months later but four I decided to take a pregnancy test, not for any reason other than … something told me ” take a test” literally I had no reason too… AND WE GOT A BIG FAT ” PREGNANT”
I was in shock I didnt even know what to do, i’m still in complete shock as I type this. At my appt they confirmed my pregnancy ( yes) and noticed another mass but after radiology was done. They confirmed baby is well and the mass isn’t getting any bigger! so for now they’ll keep an eye on it but no real worries to think about!
God is faithful, throughout the years it was so hard to have hope, but I continued to pray for my body and future child. Dude, we’re so blessed. So so so blessed. This child is such a blessing.
Guys if you are struggling DON’T GIVE UP! have hope, stay faithful. Even if things don’t go how you planned them, don’t lose hope!