Hello! My name is Raven! If you’re reading this you either have Endo or something similar or have a friend/family member who does. If that is the case I’m so sorry! Endo sucks!! But you’re never alone! Join a support group! It will help you in ways you couldn’t imagine!
So here is my story! I’m 23! I’ve been dealing with pain for years! Pain in my legs constantly and worse when I’m on my period. Pain having sex. And pain in my abdomen worse when on my period!
I started dating my best friend of 7 years a couple of years ago! When we first started dating we found out that he was a daddy! It’s a weird situation but he had a fling with a girl and she ended up pregnant! Brooklynn was born 4 months into our relationship. We found out about her the day she was born! It’s a weird situation but a great one! Their daughter’s name is Brooklynn and she has 4 parents who have been through hell and back in 2 years and have managed to be friends/family. We have 50/50 custody! When Brooklynn turned one we decided to try to have a baby ourselves Brooklynn already had another new little brother and she is about to have another one from her mother! She is the best big sister she loves it! We were ready for our own!
We tried for almost a year. In that time and years before I saw numerous doctors explaining my pain. I explained the leg pain to numerous doctors and told them I don’t know how but it’s related to my period they assured me it wasn’t, they would prescribe me naproxen and tramadol and told me I was perfectly fine. One day I woke up with awful pain in my left side that persisted throughout the day. In 1 day I had seen 2 different doctors, one told me I was fine the other told me I had a cyst rupture on my left ovary. They said its normal it happens your fine go home! That night I was getting dizzy throwing up and in a lot of pain still so my parents took me to the ER! They tested me for an uti?! Even after I told them I had a cyst according to another doctor. The uti was negative they did a transvaginal ultrasound and said they saw blood. I was probably going to start my period soon. They had a follow up appointment I asked to see a certain obgyn a friend of mine used and they set up an appointment with him. The pain continued until I saw him I spilled my heart to this man Dr Richard Naggy! And with no surgery just some weird walks he made me do some pushing and poking on my stomach and what I told him; he said I would bet money you have endometriosis it’s not a sure thing and we would have to do a procedure to find out.
He gave me some info I told him schedule an appointment for the procedure which was November 25, 2014! Finally the day had come I had done all my research on endo, what they would do in the surgery and what kind of treatment after. My mind was blown! I couldn’t believe that someone finally put a title to something I’ve been unknowingly dealing with for years! It finally made sense me and my boyfriend tried for a year almost to get pregnant and nothing happened! We knew it wasn’t him so obvious all signs point to me. I was so sad and happy and anxious all at the same time! I went under for surgery, and when I woke up this first thing I did was lift up my gown to see my cuts and I saw more than one cut. At that point in time I knew without him telling me that I definitely had this disease. I was fully aware of my surroundings and what it meant to have more than just the cut for the camera. My doctor came in and told me the news. Stage 4 endometriosis and endometrioma, they removed a significant amount of endo, and drained a chocolate tumor on my left ovary (which is what the ER people said was my period starting. Chocolate is a term for dark brown blood) he told me my tumor on my ovary was hemorrhagic and my left ovary had coiled around like the end of a candy wrapper. My first thought is shit. I’m never going to have a child.
They gave me the Lupron shot and sent me home! I think that shot was worse than the surgery and the news of having stage 4 endo all together! I was so tired and had hot flashes constantly! And damn was I a monster! I refused the second dose. I could not handle it! For some Lupron is great and that’s awesome for those of you can handle it because for endo it’s the closest thing to a “cure” we have gotten! At least for 6 months right? But for myself it’s not worth it.
This journey has been hell! The pain, the rejection from doctors, the doctors thinking you’re a pill addict for asking for something stronger than naproxen and tramadol. I’ve known about this disease for 8 months but if my calculation is correct I’ve been dealing with the side effects for roughly 5! 5 years of me telling doctors something isn’t right. I thank God for a diagnosis and finally having that relief of not having to convince someone ever again that I know something isn’t right and being told I was fine just need to “toughen up”.
But I’m also sad. I still haven’t gotten pregnant I will start seeing a fertility specialist in about a month in a half and even that has no promises. We have decided that if all else fails we will do foster care/adoption. Foster care with the intent to adopt.
I think the most important thing to remember with endo is not to let it control your life. I don’t need to toughen up, I know I’m tough! I know some can’t work but for me I think my job is important to continue doing regardless. I will always have pain I can decide to sit and let it control me and not work or live my life or I can get up every day and face this hell with a smile on my face. I fight through the pain! I have a physically demanding but rewarding job. I’m a developmental assistant for mentally handicapped adults in a mental institution for the state of Missouri. Endo will never stop me from doing what I love. Endo will not take over my life!
I will not let this disease win! And neither will you! You have support! It’s physically and emotionally exhausting I know, but it’s not you. Do not let it consume you. The first few months after surgery I threw a pity party, and that’s ok every once in a while. Throw yourself a pity party then get your ass up and go live your life! I know this is long and probably a scattered story. I’m not a writer. This is just my story.
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