Possible Endo Patient

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Hi, I am knew to this thing. I have been doing a lot of research and believe I have endometriosis. I saw my gyno today who also believes I have it, too. I had birth control before for a few years, I was taking Sprintec. My mom read all this information about it having risks of strokes and got scared and took me off of it. A year later, I tried to get back on it, but my body would not accept it - I was up every night puking for a month straight. A year and a half later I tried an IUD called Skyla. I did a two-week check-up after the insertion and had my strings cut a little shorter. I had a lot of spotting though that was very inconsistent. 3 months later I went to my gyno again explaining that I still haven't stopped bleeding and that I have had bad cramping (not the usual period cramps, it was worse). They took an ultrasound and found nothing abnormal and said the IUD was in place so my body is probably still trying to get used to the IUD. I ended up getting it removed 10 months later because my periods were irregular and I was experiencing severe cramps. I would want to fall to the ground in pain and the only thing that would help was a heating pad. I would be mid-conversation with someone and have to bend over and they would say I was going pale because the pain was so bad sometimes. I knew something was not right. The pain has not gone away. My periods are regular again, but my cramping is severe the first few days of my period, a few days before my period, and during ovulation. This past month's period was so bad that a heating pad on its highest level nor Tylenol helped - I had cried myself to sleep in pain. I would also like to note that my pain is mostly on my left side about waistline.

My doctor told me of three options she thinks would be my best route: a continuous birth control special for endo women, a lupron monthly shot (which has side effects of mood swings and hot flashes - pushing it to the very bottom of the list), or a diagnostic laparoscopy. I am almost 21 years old and would like to have kids in the future. I am looking for advice and experiences please and thank you so greatly.

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  • Posted

    Hi Ria31293, 

    Your story is literally my story. I just turned 22 and am about to have surgery to remove a mass the drs believe is endometriosis. I want kids and I’ve been adamant about that. I’ve tried the birth controls and prescription pain medications. The only reason they are doing the surgery is because the mass is so big and a tumor test came back positive. Push for the laparoscopy it’s the only way to know for sure and it’s going to get you a diagnosis so they can further help you. 

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    • Posted

      I’ve had multiple mri’s , ct scans and ultrasounds. They did a blood test too called a tumor marker test that I guess tests to see how cancerous the tumor is and they got a positive result. The only way to get a true diagnosis is the laparoscopy. I’ve been told that there is no cure but they can fix the pain and my dr suggested that I get pregnant ASAP which sucks because I’m in nursing school but I might not get another chance after my surgery. For you I’d suggest getting the lap because there are different stages and some are worse than others but they have studies and experimental studies that might help you. 
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  • Posted

    get it checked out ASAP. The longer you wait, it will turn into endometrioma. Large chocolate CYSTS. And when they rupture... Whooosadeek You won't be leaving your house all week. Don't wait as long as I did. 

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