Healthful: My Endometriosis Story

In a recent post on Endometriosis Awareness Month, I talked about the importance of awareness and education of reproductive health and diseases. In an effort to continue spreading the awareness, it has always been an important point in starting this blog, that I share my own personal story with endometriosis.

When did it start?

The interesting thing about endometriosis, or any reproductive disorder, is that it often takes years to have a concrete diagnosis. I started my first menstrual cycle when I was 11 and the pain that came with it was substantial, but I was told that some pain and cramping was normal. After a 6-month stint of not having a period and then it reappearing, that same pain was there. I went to see my family doctor who prescribed birth control pills and referred me to a gynecologist who prescribed Naproxen for the pain. There was no further investigation, just medication. Over the years, I had ultrasounds and routine examinations that showed I also had cysts, but still no further investigation, just medication. The birth control controlled the pain for approximately 10 years. I was finally diagnosed at 26 (last year) after an ultrasound showed a mass on my right ovary.

Finally, A Diagnosis

The summer of 2015 wasn’t too eventful, except for a growing sensation that I was getting in my legs. It’s strange to describe. It was pain, but it wasn’t. It was pretty much constant and felt like a buzzing or numbness. Sometimes, there would be sharp pain in my hips/groin area, but they often passed. In October, I went on my first solo trip to Europe. It was amazing and full of crazy experiences. I don’t remember there being any pain during the trip, but in November it had started up again. I went to see my new family physician for some stomach issues I was having and requested to have a pelvic ultrasound (which I had tried to get in May for my annual physical, but was told “If it isn’t bothering you, it isn’t necessary”) to check up on the ovarian cysts I had. Low and behold, it showed a mass on my right ovary. I was referred to a local gynecologist that specialized in ovarian cancer. I had to do a C-25 blood test, which is a pre-screen test for cancer, however, my levels were not high enough and I was referred to another ^th, 2016 and I was in laparoscopic surgery January 15^th, 2016.

Treatments Thus Far

Another interesting thing about Endometriosis, and I suppose what contributes to the delay in diagnosis, is that the only true way to diagnosis Endometriosis is through surgery. There are a lot of sites that say that MRI, ultrasound, and x-ray are used for diagnosis but the truth is that the imaging just isn’t clear enough to pick up on the lesions to confirm that it is in fact Endometriosis.  January 15^th was my exploratory diagnostic laparoscopic surgery with excision (meaning they were going in to see what exactly was going on, if there was endometriosis present and if so, they would laser the affected areas). Since my gynecologist suspected that it was in fact endometriosis, I was prescribed with Visanne (which I started immediately), a progestogen treatment which stopped my menstrual cycle. Unfortunately, this wasn’t the cure I was looking for. A few months after my surgery, I was finding that I was still getting pain in my legs. Daily and constant pain. I notified my surgeon at which point she was (I felt) hesitant to do anything more, but ordered and MRI. She said that if further surgery was necessary, she would not be the one to do it. The MRI showed an endometrioma. So, I was sent to another specialist and prescribed Lupron. Now if you do a quick Google search of Lupron, you will see all the nasty reviews and side effects that Lupron has to offer…and here this doctor was prescribing it to me. Nevertheless, I filled the prescription and held on to it, just in case. I waited and waited, dealing with the daily and constant pain. I bought a Magic Bean heating bean bag (a complete life saver) which I brought almost everywhere including work. Finally, in August, I had my second laparoscopic surgery to remove the endometrioma and any other endometriosis that had regrown. In December, I made the decision to take the Lupron shot on Christmas day. For Endo, those are the options: surgery and medication.

Current Status

 I’m at a point in my journey with this that I’m content. There is so much power in a name. Knowing that those weeks that I wasn’t able to walk do to the extreme pelvic pain… that there was a name for it. That I wasn’t imagining any of it as many women in positions like these often consider. “Is the pain real? Why isn’t anyone doing anything about it?” plagued my mind for years, especially most recently. Knowing the disease has given me such peace of mind. I’ve come to terms with the fact that after all the treatments I’ve had over the past year, and as the Lupron taken on Christmas day is wearing off, that pain in this form may always be a part of my life. What’s most important now is keeping my body as healthy and happy as I can. Finding natural ways to help keep the endometriosis in check, putting healthful routines in place, and nourishing my mind and body for a holistic lifestyle. That’s part of this blog’s philosophy. It’s finding ways to curate the best possible life for yourself, whatever your circumstances may be. It takes strength you never know you have until you start.

What is your journey? Do you know someone with Endometriosis? I’d love to hear about it.