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Words of wisdom before lap surgery

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!

  1. Hey ! First of all, I want to extend a big welcome to the community! We're so glad to have you here. It's been over a week since you posted, so I wanted to check in with you. How did your diagnostic laparoscopy go today? I hope you're recovering well! I'm so sorry you've been dealing with all this. Endometriosis really is a tough hand to be dealt with all the challenges it can bring. I wanted to share a few articles with you that I think you might find helpful.

    This one gives tips for post surgery recovery: https://endometriosis.net/living/laparoscopy-recovery

    Since you mentioned that you were worried about the cost of everything (which is totally a valid and frustrating concern!) here is a quick overview of some of the costs other members have faced: https://endometriosis.net/clinical/cost-laparoscopy-surgery

    This member writes about her experience with being diagnosed at a young age and her journey sounds similar to your's. Maybe you'll find it relatable: https://endometriosis.net/living/endometriosis-and-migraines

    Finally, here is an article all about hormonal acne. This is something that I also struggle with and I can totally empathize with how much it impacts your self esteem. Hopefully this will give you some good tips to try! https://endometriosis.net/living/adult-acne

    Please give us an update on how you're recovering. Sending lots and lots of healing thoughts. - Kat (Team Member)

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