After receiving a few messages, asking me what’s Endometriosis? I thought maybe I should write a post explaining. It’s important to remember that I got these definition off the internet and Endometriosis, also known as Endo, affects every person differently. There are many people who have Endo right this minute and don’t even know it or have been misdiagnosed. I hope this post will help explain what’s the deal with Endo…for me.
Here’s Siri’s take of the Endo. One thing I’ve learned over the years from all my “girl part troubles” is that even if some things are true for most people, the effects can be very different for each person. Also this Endo business only gets worse. It keeps growing and keeps taking over and moving on the other organs in your body. There is no cure.
I started having issues at the age of 16. It started out being a nightmare-ish PMS. My periods would last 10 days or more, the pain was so intense it’d cause me to throw up. At 16 this was horrible for me in so many ways. Maybe I would’ve been able to handle everything happening to my body and the mental effects better if I were older but as a child still, I would cry myself to sleep feeling confused and empty. I wasn’t able to really explain to anyone what was making me feel sick…I was in embarrassed.
Of course at this time in my life I didn’t know anything about the nasty, incurable endo. I was told I had PMS syndrome.
This is pretty broad but for me it meant really heavy periods, cramping and mood swings. I was put on birth control and this helped for a little while. It didn’t stop the pain and bloating, that still happened all the time. But when you have really bad pain everyday, going from a 10 to 7, is great. So I was happy…for a bit. But an Endo diagnoses does not get better. I just didn’t know that had this at the time. It’s one of those things that won’t kill you , it’ll just make you feel like you’re dying.
I was 22 now… one day I fell to my knees in horrible pain! I felt like someone was stabbing me with a dull butter knife from the inside, trying to get out. The pain took over my lower abdomen, my back…everywhere. I couldn’t even seeing straight!
I had an ovarian cyst burst. I had an ultrasound and an MRI. I had a few of these demon babies! I had 2 cyst still intact, one the size of a grapefruit and the other a lemon. How they actually fit inside, I still don’t understand! All I knew was how crazy painful it was! I was put on yet another birth control and told to monitor my pain (whatever that meant). It was only a year later, I was having my first laparotomy surgery. This is where my Endometriosis was found.
So it was 2003 when my Endo journey began. I had many ovarian cyst burst, it was horrible but I got use to the pain and how to handle it. I learned real quick the ER was no help to me so not to bother. All I could do was stay on birth control, watch my diet, exercise and think happy thoughts!
I even had to go and get, not one but two Cryosurgeries or therapies because pre-cancer cell were found on my cervix. Although I did experience extreme cramping during this and discomfort for serial day, this procedure was the less painful I’ve gone through. It was mostly gross if I’m being totally real.
Years went on and I had my son and although that was a difficult pregnancy, he and I both were healthy in the end. I was told that maybe pregnancy would help my “girl issues” but it did not. I suffered for years and years to come and even endured another Laparotomy to see how Endo had spread. I was at this time informed my Endo was now all over my colon.
After my daughter was born nearly 5 years later, I really was in pain all the time. I found out I was going to need to get my gall badder removed. This I could not blame on Endo but still it was pain! After I got that situated, I was hit with yet another medical pain only 2 years later! I was diagnosed with migraine induced seizures! This actually might be to blame on PMS and Endo. It also could be that I am quite unlucky! Well, because of this I was put on seizure medication that didn’t worked while on birth control that I took for my Endo. So of course my pain got worse when I wasn’t taking or doing anything about it. This is when my OB and I decided to try a type of IUD (NON-COPPER) normally, this is a horrible idea for women who get cyst and have all the issues that I do but we really had no choice! At my age no doctor was willing to do a Hysterectomy…yet.
I was willing to do just about anything at this point because I hadn’t felt “good” or even human in a long time. Going to bed early, never making plans or ever being social was common for me. I was passed being depressed now and felt like no one really could understand what was going on with me. Sometimes, I felt like I was even being a wimp. Like, I had the invisible sickness! I still went to work, took care of my kids, made dinner, cleaned our home, handle all my normal responsibilities … but smiling become hard to do. I faked it but even that became hard.
It was close to year with the IUD and I actually started to feel somewhat …mostly normally. This was amazing! I would take full advantage of these days! I would sit outside with my dogs and play fetch. Watch my kids ride their bikes. Walk to my kid’s school to pick them up rather than drive. I would even enjoy a glass of wine or a cold beer with my husband from time to time. Go me!
Still I wasn’t out of the woods. The headaches were still there, the break outs all over my face, my PMS was still out of control… even if I only had a period once in a while, I was still not myself. I would bloat so badly that I would look like I was 8 months pregnant. But there was nothing I could do but deal with it. I was 32…doctors wanted me to wait.
Finally, nearly 5 years later the IUD comes out and I notice a small sharp pain in the lower right side of abdomen close to my right hip. It was mostly annoying more than anything. As the next year goes by the pain grows, my weight goes up (140 to 190), my break outs get worse (way worse), my depress and anxiety hit an all time high and now going to the bathroom becomes an uncomfortable issue too (we’ll leave it at that).
I was given every test under the sun, every lab there is. Guess what? I’m health, only low on Vitamin D. I’m told to work out more, eat healthy, be positive…Are freaking you kidding me! I was already walking everyday (in pain)! Do these doctors think I hadn’t noticed I was getting fat? Did my doctors think I was going to the fast Food joint everyday…try never! I had been so careful with my food intake because my stomach and bowels hurt. I had started yoga, meditation, writing, walking, reading, a good daily and nightly routine…I was taking anti depression meds and anti anxiety meds. I was doing everything I knew how to do and then the doctor with the medical degree says to be more positive. I could die!
A few months ago I finally got a doctor to take me seriously and look at my history. Of course doing a Hysterectomy is not the first step for any doctor. But she did let me know it was now on the table for sure. My Endo had grown and was not going to stop anytime soon. We tried meds to get my over productions of estrogen to slow down the growth but I got every side effect in the book…just my luck. I was going to try the Leuprolide shot but something told me to just stop the madness. My pain is currently in my legs, all the way up into my ribs. I have headaches and to be totally honest…I am starting to feel crazy. I haven’t had a pain-free day in months…maybe a full year.
I want to be the wife and the mother that I was called to be. I miss my friends and I want so badly to fulfil my hopes, dreams and goals without this nagging pain holding me down and draining me any longer.
July 11, is my surgery date. I am scared. Part of me is weirdly sad even. But a bigger part of my is excited to get my life back. It’s been too long.
I want to get back to yoga with my besty! I miss the long summer nights enjoying the neighbor kids playing together and the adults visiting and laughing together. I miss BBQ’s and craft beer for crying in the night! I can’t wait to have back my quite nights alone with a glass of wine and binge watching Ghost Adventures or some crime drama. I miss being able to explore with my family or going on new adventures with them. I miss walking to the coffee shop and writing my blog outside instead of drowsy from my bed. I miss having dinner dates with my friends and laughing for hours! I miss being my husband’s girl! I miss being close to him and being spontaneous with him! I miss so much having our dates together. I miss having fun together! I wish Jason didn’t have to take care of me so much! I miss enjoying my kids and having the patience I should have. They deserve that. I miss my relationships and having carless and pure fun. I miss enjoying life. I can not wait to get these precious gifts back in my life. Never take them for granted!