Hello, I’m new to the community and I’m seeking some information and advice.
I have been told since I was 16 that I probably have endo and my pcp put me on continuous high estrogen oral birth control instead of surgery which is what I wanted. I’ve been in this pill for 10 years now with on and off problems including heavy bleeding and extreme pain in the middle of my pill cycle. I couldn’t sleep from the pain and would leave crying voicemails to my pcp begging for help and she always told me to take OC pain meds and wait it out. My symptoms have progressively gotten worse and worse including GI problems, pain to the point where I was taking 10 Advil/Tylenol/aleve a day, vomiting, hot flashes/flushing, light headedness, and extreme fatigue. I also have POTS so there is a chance some of these symptoms are from that or that they are both causing my symptoms to worsen for each illness.
In Sept 2024 I finally found a doctor who was concerned by my symptoms and immediately wanted to help me. She told me my pcps decision to put me on a high estrogen pill likely made the endo worse and having me take it continuously made my symptoms worse as well. I’m getting a diagnostic laparoscopy with possible fulgurations of endo on the 24th of this month and they are also inserting a Mirena IUD which is supposed to help minimize the symptoms of endo.
I’m getting excited for the surgery to finally happen however I’m getting very scared/nervous the closer it gets. I have a high pain tolerance at this point so the surgery itself doesn’t scare me. I’m scared they won’t find Endo and it will be back to square one or they find something else or something worse and i will have less answers than before. I’m scared of the cost of everything, I have health insurance and I’ve been saving up as much as I can since Sept but I feel like you never know the real cost of it until the bill slaps you in the face. I’m worried this will impact my ability to have children, not that I’m in a place to have them now but I don’t know what my future holds with all of this. Lastly I’m worried about how the Mirena will affect me. I’ve been on an estrogen birth control for so long that I don’t know what my body will do with progestin. Vainly I am most worried about getting severe acne. I’ve finally had my breakouts under control and minor for the last few years after having horrible cystic acne in my teens and I really don’t want to go back to that place. It led to serious depression and low self esteem problems which I have worked very hard to overcome. It sounds stupid as I type it but it is the truth of my feelings.
With all that said I was hoping to get to insight and wisdom from anyone who has been through this to ease my nerves. Any and all advice, thoughts, information, experiences would be helpful!! Thanks!