Urachal Cyst? Umbilical Hernia? No, it's Endometriosis.

[Shea_Kails]

Hi everyone, thank you all so much for sharing your info. You were all able to help me self diagnose my problem, because just like everyone else every doctor I went to said that it couldn't be endo because it was so rare, or because I had never had a c section. Towards the beginning of my menstrual cycle in middle school I would have to stay home from school a couple days a month because of the excruciating pain I was in, crying, screaming, curled up in a ball. My mother almost brought me to the ER a couple times. I was put on the pill and those symptoms subsided. Later on in high school I started to get intense pain in my belly button but I never noticed that it was related to my cycle. I went to my pediatrician who suggested it was an umbilical hernia and to keep my core strong and exercise and the pain should subside. It wasn't so bad so I just went on thinking that's what it was. Finally in my early 20s the pain started getting worse and more frequent. I spoke to my gp and she thought it occurred from stress as I was going through a lot. So again, I wrote it off. 6 months later my belly button began to bleed during my menstrual cycle and produce an awful smell that I could smell just sitting at my desk at work. I am now 24 years old. This is when my mother suggested endometriosis. At this point I had never heard of it. This was the most helpful info I was able to find from all you ladies which is why I am sharing my story. I went to an OBGYN and a general surgeon who ordered me a CT scan. They both ruled out endo saying that it is too rare to have that around the belly button. The surgeon actually called me back and told me that the CT scan came back normal and I had nothing to worry about. I asked him what about the pain I've been having all my life? He gave me some bs answer and obviously didn't want to look into it any further. This is when I scheduled yet another appointment with another doctor. He was the one who finally saw something abnormal on my CT scan. He was an abdomen specialist (one of the best). He scheduled my surgery for a week after my first visit with him to treat a urachal cyst. When he began surgery he noticed the mass was much larger than he had thought and it was not a cyst. This was the first time he had ever seen anything like it. I actually printed out this entire thread and brought it to him on my first visit asking him to please consider (thank you all again for sharing!). Sure enough, I got the results back after he sent the tissue off for testing and it was endo. I am just now recovering from surgery and I have my follow up with him next week. I am now just worried that the endo has spread but I am hoping not. Fingers crossed that he got it all out. It is great to have such a wonderful support system on this forum. I hope I can help more girls diagnose their issue because the doctors can't seem to do so! Be insistent and persistent. It's your body! If anyone has any questions or needs more info please do not hesitate to reach out. I know what you are going through and it is not fun.

[Queen_helena17]

I’m going through this right now ! With a bunch of other problems. I use to always say my belly button was leaking and no one believed me! It bleeds and smells horrible! They told me urachal cyst but given my history they are going to check for endo while I’m out instead of putting me under. I have mast cell type reactions as well so I never know how I’ll be with anything ! So overwhelming . This made me cry though because it’s actually a thing and I’m not crazy!! I hope all is well