When I was a teenager I had horribly painful periods. I would double over in pain almost every month. I was put on birth control pills at 14 years old. NO ONE ever thought anything more. EXTREMELY PAINFUL PERIODS ARE NOT NORMAL!!!! I would hide in the bathroom in High School doubled over due to cramps. Fast forward now to 29 years old. By this point I have had 3 pregnancies and 2 miscarriages. I have also thought my children were miracles but now I know what a blessing they are and how blessed I am to have them. At 29 years old I was hospitalized for 4 days due to what the doctors thought was PID (Pelvic Inflammatory Disease). I was pumped full of antibiotics, it never helped the pain. DUH!!! I was having a flare up of the endo!!! I am not sure at this point it really was PID, maybe it was but I really doubt it! I continued to go to OB/GYNs and none of them thought anything of my symptoms. Oh well I guess I am doomed to a life of this.
Finally, the beginning of 2014, my BFF J suggested I go see her gynecologist. I did. FINALLY A DOCTOR BELIEVED ME!!! Dr. J (wow I have a lot of J's in my life lol) suspected it was Endo immediately. She scheduled a surgery as fast as she could and got me in there in March of 2014. Soon as she got eyes on my guts she knew it was Endo. She did an ablation surgery, where the spots of Endo is burned off. The Endo covered my left ovary, bladder (where she took a biopsy) and abdominal walls. Phew this was going to be over!!! After recovery from surgery, I was pain free!! Thank God! I was going to finally feel better. HAHAHA, YA RIGHT! I wasn't that lucky! Within a month of the surgery I was back in pain.
In May 2014, without researching anything because I was just reaching for anything to help, I agreed to try Lupron. Within 3 weeks, I felt better again! This medicine is supposed to put the woman into a fake menopause. Ya I had hot flashes, night sweats, fatigue, nausea etc. but that was all better than the pain I was feeling. Then by 10 weeks after the shot the pain started to come back. So of course Dr. J said I was a perfect candidate for the second shot of this. 12 weeks I did the second shot. I started losing my hair by clumps, thank goodness I have a ton of hair. I looked up the medicine, this is a chemotherpy drug!!!! It is used to treat prostate cancer and they found the side effects can help the Endo. CRAP, what have I done to my body!!!!!! I never received any relief of pain from the second shot. Dr J suggested we do a full hysterectomy, she reassured me her patients all have had relief from the pain and the Endo doesn't come back. So this time I got smart RESEARCH STUPID!!! There is no way the Doctor can tell you that. THERE IS NO CURE FOR ENDO!!! Hysterectomies DON'T stop the Endo!!! So I started becoming uncomfortable with Dr. J doing my surgery.
I researched Endo support groups! I came across Powerful Endo Women on Facebook and met my new amazing friend and support S. Well S informed me that there are 6 specialists in the United States and us here in Portland Metro happen to be about 45 mins from one!!! I was really reluctant at first, I just wanted to have this surgery and be done with it. What if Dr. P wasn't going to do my surgery? What if the pain I felt wasn't what we thought this whole time? Was I going to have to start all over? So after hem-ing and ha-ing for a few weeks I went to see Dr. P. HOLY COW SHE IS AMAZING!!!
Dr. P agreed I needed to be in surgery and by Dec. 2 I was in surgery with her. A robot and Dr. P did my surgery. Crazy thoughts letting a robot inside you. Dr. P does an excision surgery, where the spots of Endo is cut out. This stops the regrowth of the Endo in those spots and does not let the Endo spread like a dandelion all over the abdomen like the ablation surgery does. We also decided to more than likely take out the left ovary due to the majority of my paining stemming from there and to take out everything but the right ovary. My 2 to 3 hour surgery turned into 4 hours. There were way more spots of Endo that she thought. I haven't gone in for my post op yet, that is in 2 more days but from what we know there was Endo covering the left ovary, abdomen, behind the rectum, a spot on the diaphragm, some on the right ovary and on the uterus. We will see what else she has to say when we meet with her.
The recovery has sucked. But in the first 2 weeks Little J got the stomach flu, I then got it, then KZ got croup, and I have some nerve damage from the surgery. Oh well such is the life of a mom, right? Things are better now that I am 3 weeks post op tomorrow. It's slow but there is improvements.
This post was really long, but I had to catch you up on 20 years!!! LOL
You did great on this!!!
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