You know that feeling of satisfaction that you get when you've finally really figured something out? I was so sure that I had that after my surgery. I was sure that I knew how I could keep my endometriosis in check, at least for a little while. I had done extensive research and connected with many other women with endometriosis; I had acquired quite a lot of knowledge on the subject. But yesterday, my satisfactory state of mind was altered.
I had an appointment with my surgeon and gynaecologist to check up on how thing's were going post-surgery and because I had been having some issues with a bladder infection and some inflammation. We discussed my current state and decided to go ahead with an ultrasound and wait for the cultures from the urine sample. Totally normal appointment stuff. Then, when we go to talk a little about the surgery, my doctor takes a deep breath and says, "Well..... You don't have Endometriosis."
... Um. WHAT?!
"I don't have Endometriosis?"
"Nope, you don't. You have a rare disease called Endosalpingiosis."
So, that was my day yesterday.
Can you image, having a diagnosis for the last 6 years and having more than one surgery confirming that diagnosis and then all of the sudden, you don't have it anymore. You have something else and no one knew, not even your surgeon, until now.
How does that happen, is what you're probably wondering. Just like I was wondering when I heard the news. Well, I'm going to try my best to explain how exactly this happens. Unfortunately, there will probably be gaps in my explanation due to the rarity of this disease and the lack of definite research and information on Endosalpingiosis.
I was told at the age of 16 that is was likely that I had a disease called Endometriosis. Endometriosis is the deposit of uterine lining on other organs usually in the abdomen. These deposits bleed and often grow, causing lesions and built up scar tissue over time. Because of the severity of my pain, I was given a surgery to diagnose the condition and to cauterize (burn off) the unwanted deposits.
Along with a continual birth control to regulate hormones, I was mostly pain-free for about two years. Over the last two years or so, the pain has been coming back swinging. So much so that after a lot of tests and procedures coming back negative, another surgery was in order. That surgery happened just 28 days ago. This time, instead of the deposits of what I was told were endometriosis, being burned off -- they were excised (taken out of my body) and tested with a biopsy.
It turns out that the biopsy showed that what we had figured was Endometriosis was in fact not at all Endometriosis but it was Endosalpingiosis. Endosalpingiosis is similar to Endometriosis and very likely goes undetected because only a biopsy can differentiate the two diseases.
Endosalpingiosis is rare because instead of being made of uterine lining, it is made up of Fallopian Tube. Weird, right? These pieces of fallopian tube develop cyst-like deposits along the organs in the abdomen, but when biopsied they are considered to be benign tumor-like uterine cysts. In my case, benign (thank the Lord) uterine tumor-like cysts made of fallopian tube along with benign urinary bladder tumor-like cysts made of fallopian tube. Also known as ENDOSALPINGIOSIS or Florid cystic endosalpingiosis.
There is a huge lack of research on the Endosalpingiosis front. I've read all night and all day today so far, and that was about all I could find. The only thing I do know is that like Endometriosis, Endosalpingiosis is still affected by high levels of Estrogren causing these benign cystic tumor-like deposits of fallopian tube to grow and multiply. Also, in some cases these tumor-like deposits can carry carcinomas (a cancer arising in the epithelial tissue of the skin or the lining of the internal organs). Thankfully, the biopsy showed that my Endosalpingiosis is neither cancerous nor pre-cancerous. I also know that it is very likely that it will begin to grow again in the next year or so. I'm hoping that with continual birth control for hormone regulation and persistent check-ups when I have pain, I will be able to monitor this strange condition.
The biggest reason I am writing this very detailed blog post is because I had been wrongly diagnosed for six years of my life, even after two surgeries. If you have Endometriosis or if you suspect you may have Endometriosis and you need to have a Diagnosic Laproscopy preformed, I want to encourage you to find a surgeon that will use the Excision method rather than just Cauterization. Endosalpingiosis can only truly be diagnosed when excision is used and a biopsy is done on the tissue. No one should have to be wrongly diagnosed. We should have the right to know exactly what goes on in our bodies, especially if they are not functioning as they should be.
If you have any information or experience with Endosalpingiosis I would love to hear from you. Feel free to contact me by commenting on this blog and I will get back to you.