I just want to share with everyone about this horrible disease! I want to raise awareness!! So how does little Ol me get the ball rolling?
Not knowing sucks! 7 weeks out from surgery…. Still in pain!! Doc talked to me about babies and fertility drugs today. Needless to say I’m confused, scared, wondering and every “what if” is running through my head! I’m almost 35 and ten surgeries in the books with one scarred up tube… Should I even try this and end up heartbroken?? I just want peace! So many fertility options, if we can’t get pregnant but all are so expensive! Then it just makes me so mad that just this week I hear of a mother of two giving her children away because she just didn’t want them anymore!!! Why?????? I’m giving it all to God! I just had to put my thoughts on here. I use to think I was a strong women but I’m feeling so weak, tired, and broken! Thanks for letting me vent! #endowarriors
Ok… I’m gonna share about something’s that have happened this week. Yes, I’m skipping some years of my journey with endo but I promise I will go back and share it all. This week has been tough!
Just when I thought things were looking up….ughhhh! Ok so as of right now, right this minute I have been endo free for at least ten months; with the uncertainty of when it’s gonna show back up. Last Friday I started having some very severe pain in my right ovary, debilitating kind of pain! I pushed through it because I really didn’t want to think anything was wrong or that the endo was back. The pain got worse with every day that passed. So Tuesday I got appointment to see my doc, he had the hospital work me in for a sonogram. Oh joy!! Doc got the results and set me up an appt. to see my OB the next day.
The next day rolls around and guess what my OB wants another sonogram! Let’s not forget I’m in so much pain I can barely walk! So I’m watching the screen as he is doing the sonogram and as soon as he scans my right ovary there it is…….a GRAPEFRUIT sized cyst on my only ovary!
Of course I start I crying because he starts telling he doesn’t think it’s cancer or endo(which is great!!) but that it’s a cyst that will continue to grow!! I can either take lupron injections (menopause) or have surgery! I’m tired of being cut on! I want to be a mom! What choices do I really have??? I’m heartbroken right now and just frustrated!
I just want so bad to be healthy!! Stay strong endo warriors! It may not ever get any easier but always know there are many women out there who understand everything you are going thru because they are going thru it too!
So after the fun year of hot flashes and mood swings (just a little sacasm) I stopped the injections. My body went right back to working like before…with lots of PAIN! I was able to get through about another year before I was doubled over and crying in front of my doctor again. Of course I heard the dreaded word, surgery! I just wanted to scream! Medical debt was piling up and the pain only got worse with every cut! (Laparoscopic)
I was beginning to think I was pro at this. I got everything worked out at my job for time off and prepared to recover for at least two weeks maybe even less. I was ready to get it over with!
Right before the doctor broke the bad news of the endo being back; I had recently met a guy and started dating him. I was pretty dang smitten with him. When surgery rolled around we had been dating about three months. He told me he would help me and be by my side through it all. I knew I had found a good one but was he too good to be true?
He stayed true to his word! During surgery I lost one ovary and Fallopian tube and couldn’t leave till the next morning. He let my mom go home to get some sleep and stayed at the hospital with me that night. I remember vomiting late that night, which I had never done that before with the first two surgeries.
Next morning when I’m discharged he gets loaded up and takes me home. He made sure I had everything I needed until he had to go to work. I was in pain but doing great for about 24 hrs then things took a turn…. I couldn’t eat anything without vomiting.
My mom calls the doctor, and of course they say for me to come to ER! Oh how I loathe that place at this point, I don’t want to go back! Ok if I have to go, I’m getting a shower first!!! Get there and they start running test, hooking me up to machines, and poking me with needles. Then 3 doctors come in and tell I need emergency surgery! What???? Then they call in a fourth doctor to convince me to let them cut me open. They start telling me they think my bowels maybe perforated.
I told them…. I feel fine, I will come back in a few days if I get worse. Yall are not cutting me open! Doctor then says…You could be DEAD in a few days if we don’t go in and check! Ok well I guess there is no arguing with that. I texted my boyfriend and told him what was going on because he was at work and I’m crying. My mom is trying to call my dad; and in flies a couple of nurses who strip me of my clothes, get me in a gown, turn up my pain meds, I tell my mom I love her, and I’m whisked down a hall. Now these people are running with me! Then my bed stops in the hallway and these people appear from all directions and they are smiling and calling me by name!
This is either a bad dream or a bad movie scene! They wheel me into a room, it’s bright and very cold. They strap my arms down and tell me to count back from 100 and for me to enjoy my sleep. I wake up screaming a few hours later while 3 itty bitty nurses are trying to pick me up and put me in the bed. One nurse who was 9 months pregnant and 90 lbs soaking wet. When they realize I’m dead weight at 5’5 130 lbs they ask me if I can get in the bed myself! Sure! Why not? I just had two surgeries back to back. One where I was cut from here to Texas on belly but yeah how bout a quick jog down the hall too! Five days there and a little over a month off work. Endo hurts! Stay strong and keep your head up!
Hey yall! Sorry for the delay! I thought I better slow down from writing every day before I had my story on endo told in a week.
I do want to share with you today there is HOPE for all who suffer from this horrible disease! That hope is God! I am 33 years old, recently married, and no children. Not sure if I can have any yet. I will get more into the fertility part later on. God has been with me every step of this journey! If not for Him I wouldn’t be here today! Cling to Him! His grace and mercy is new every morning! Please don’t let this disease steal your joy, stay strong! God bless! Proverbs 18:10
So after the second surgery I went back for my two week check up. My Doctor talked to me about this awesome drug she wanted to try me on that had a few drawbacks. One of those being it was very expensive and the other was that it would throw me into menopause! Hold the phone! I’m only 30 years old and I haven’t had children yet! Boy, did I have a lot of questions for her! So we discussed it and I went home, thought and thought about it. It would help me keep the endo at bay, but still wanted to ponder on it for awhile. She also told me that I wouldn’t have a period…yay!!! This was also not a permanent thing, it would all reverse itself once I stopped the injections. But wait, it would bring on hot flashes and night sweats! I weighed my options and chose to try it out. When I went back for my next visit I started the injections. The hot flashes and night sweats began pretty quickly and it was not fun! My periods slowly stopped coming. Some may think this is a good thing but when your body is designed to do what it does and then it can’t ; you really begin to feel the effects of it. I felt bloated a lot and just didn’t feel good at all.
This all went on for a year. I was told by my doctor that I could only take three injections in my lifetime because of the effects it would have on my bones. (⬅️ Hint:Remember this statement for later reference) So the injections helped keep the endo away an extra 12 months more than normal. But the side effects were not worth it. Some people it works for but it wasn’t for me! Years later I was told by another friend who endures the pain of this horrible disease that the injection I took and that she rejected, was a form of chemotherapy. She done her research, I didn’t!
Sorry for posting so late today… I still can’t wait to share so much more about my journey with endo. I share only with the hopes of helping others who struggle with this horrible disease! Stay strong and God Bless!
Just a little over a year later I decided to go talk to my fancy wancy brand new OB who I absolutely loved! So far she had been a caring and understanding doctor. Then there was the fact that she was a woman, a woman who knew the female body before ever cracking open a book in med school! This day in particular that I decided to go see her was for severe pain that I was having like before. Like the pain right before my first surgery. But I was so naive that day I went in the doctors office. I thought to myself, it can’t happen again, not to me! Boy, was I wrong! She performed the exam in the room… You know, the one where you have to count the ceiling tiles to keep your dignity in tact. Yeah, well I almost kicked her in the face cause it hurt so bad! She looks at me with a concerned look and says we need to get an ultrasound. Still at this point I’m clueless, thinking maybe she can just give me something for the painful periods and it will get better. So I go get this horrible ultrasound done and not the fun one on top of the belly! Just buckets of fun that day but still had no idea what the doctor was going to tell me a few minutes later. I go back to the cold exam room to wait for my doctor, which began to seem like forever.
Then she appeared. Her news was like a dagger to my heart! I heard one word and it brought me to tears. SURGERY! Again, not again! I was so numb. How could this be! She starts pulling out the calendar wanting to set up that day right then! No waiting or trying any meds! It’s pretty bad and it needs to be taken care of. I was sick! I was scared! Two surgeries in one year and still paying on the first. I can’t do this! So I thought. I got through it and so much more. My road gets a lot harder with this disease. With God’s grace I was able to overcome many obstacles!! It’s a tough disease that effects so many women. Always remember stay strong and smile through the storms!
It was the summer before I turned twenty nine. I remember it like it was yesterday…I had been wrenching in pain for almost twenty four hours without any relief. I couldn’t go to the bathroom, I was doubled over in the bed, and had taken every over the counter medicine you could think of. I took things for gas, pain, and upset stomach. Nothing! Nothing was working! I was in tears and screaming for someone to help me. Now granted three short months prior to this I had been to my OB telling her of a similar instance besides all my horrible periods. She performed a quick little exam there in the room (no ultrasound, I didn’t have insurance) and said well everything seems to be just fine! And sent me on my way!!!!!! With me telling her about my pain and horrible periods! Ok sorry, I got side tracked there for a second. So my mom gets worried about me since I can’t find relief so she turns to google. Well all my symptoms seem to add up to appendicitis. Mom panics and tells my dad to to grab up things for an overnight stay at the hospital. On the way to the hospital my daddy starts telling jokes trying to get me to laugh. He never likes to see me hurt! I remember him saying, if you got to poot you better do it now or that will be some expensive gas once we get there! Lol! We get there they take me back and start running test after test and tell me that I will be taken into surgery the following morning. I was so scared! I had never had surgery besides something at a dentist office.
So it was my first of many laparoscopic surgeries for Endo! He said he had never seen Endo like mine that it was a blood filled sac and it was very large and on the verge of rupturing. At my two week check up I was told to get on birth control or have a baby to control this disease that I had! Oh and he proceeds to tell me yours looks like it will come back every 16-24 months. I was not on any kind of birth control because I have never been able to take that stuff. It makes me a blubbering mess! Oh and having kids then, ummmm well I wasn’t married and I kinda wanted a husband first. So with that being said yes this disease causes infertility and yes it causes miscarriages…but I also believe in God and miracles! This was just the beginning of a whole lot of pain, suffering, debt, and being misunderstood. Still to this day I’m struggling with trusting doctors or even finding ones that want to listen. So I’m thinking positive and keeping a happy heart! Oh I can’t wait to share the rest of my story with y’all! Hope y’all enjoy and God Bless!