I was diagnosed with stage 4 endometriosis in Oct 2016, but like most people, my symptoms started long before then. I barely remember being 11 when my periods started, but I do remember lying on my bed curled up in a ball with a heating pad and my mom saying “This doesn’t seem normal.”

I didn’t think much of it in my preteens; I made it through middle school and on to high school just fine but little did I know that having diarrhea on your period isn’t normal or having hemorrhoids at the age of 14 during your period was a very big sign something was not right.

But how are we supposed to know what normal is? Nobody at that age talks about that kind of stuff and you just assume your period is like everyone else’s period. Or at least I did.

However, around that time I do remember reading a teen magazine that made me question everything! It was the first time I had ever heard of endometriosis and it talked about how digestive issues and cramps that left you lying in bed wasn’t normal. I never brought it up to my parents, and because I had regular periods I never brought it up to a doctor.

In my college years, I learned how to cope. I was always close to a bathroom the first two days of my period and the diarrhea was always my first clue that my period would start that day. Luckily my husband was introduced to this weird monthly ritual early on in our dating so in marriage he never questioned it.

Sadly sex was extremely difficult and out of embarrassment, we struggled for years. After a while, we figured a few things out and began to try for a family, but it was still difficult and after 4 more years we knew something wasn’t working. By this time I had been seen in the ER several times for abdominal pain and bloody diarrhea. I was counseled to see a gastroenterologist who recommended a colonoscopy. Seemed like the right step to me because my biggest complaint was how horrible my digestive system seemed to function, and now it wasn’t just period related anymore. The test came back normal and I was diagnosed with IBS. This was truly frustrating to me.

Another year went by and I decided to start the process of finding out why we weren’t getting pregnant. Long story short I left my first appointment traumatized and in tears and decided I didn’t want to venture down that path for a while. Another year goes by and I’ve now been seen in the ER twice for ovarian cysts bursting and uncontrollable abdominal pain. I turned 31 and decided I was done waiting and looked for another ob-gyn. I explained that I thought I had endometriosis and we weren’t able to get pregnant. Luckily I found an ob-gyn who agreed with my theory and ran a bunch of tests and an ultrasound. Blood work came back with some alarming news and she immediately sent me to see a fertility specialist. And then the ultrasound showed a massive chocolate cyst- essentially a blood-filled cyst. And by this time I had had numerous ob-gyns and ER physicians tell me this was normal, but thankfully she immediately said this is endometriosis. She told me I would need surgery and that she wanted me to talk to the fertility specialist first so that they could tell her what needed to be done in surgery.

Not knowing what to do I went to the appointment at the fertility specialist. He basically told me I needed to come to grips with losing both fallopian tubes and my right ovary and that I’d be lucky to get pregnant. He said he would tell my doctor what he would suggest for her to do during surgery. I was so put off and in complete denial of it all. This was the first I was hearing of this after years of dealing with it and now all of a sudden, I was going to lose almost all my lady parts?! Excuse me!! I have a voice in this matter too!

The next day I started my period and I ended up moving boxes and furniture by myself all day. By the time I got home I was in so much pain I was shaking and barely made down the block to the ER. Once again, another cyst had burst, but this time I was in more pain than I ever had been before and I was able to tell them why. I HAD ENDOMETRIOSIS (I now know that there was no definitive way to say I had endo from an ultrasound, but later it was confirmed by surgery). The ER doctor was very kind and he sat by my bed as I cried to him about my last week of test results and doctor’s appointments and dooms-day like prognosis. He urged me to find a surgeon that I trusted because he knew surgery would be the only thing that helped.

I then spent the next week on my couch taking pain meds and researching endometriosis. My first cursory look at the disease was very dismal. All the sites I found were women just complaining about their life and pain. I started to feel like my pain wasn’t all that bad; I’d been dealing with it for decades. But I still felt like this can’t be it! I’m not willing to subscribe to a life of pity and pain. I wanted to find stories of strength, of hope or living well with endo. I still hadn’t found much on disease management until I dug much deeper and started reading medical journals and watching symposiums of some of the top endo surgeons in the country. Finally, I had struck gold! The gold standard that is excision surgery by an endometriosis specialist. But now I had another hurdle – how do you find a specialist in something that doesn’t have a recognized specialty. By word of mouth and a proven track record. So again, I had to scour the internet to find a physician that I could trust. And finally, I found a few sites that had a handful of physicians listed as specialists and then after spending enough time researching each surgeon, I finally made an appointment.

I was able to get in two days later and I had 2 pages of questions to ask at my appointment. I was armed and ready this time. I knew what I wanted (though I still needed some help getting to a place of acceptance, I was much closer) and wanted to make sure he was on the same page. I was nervous! For so many reasons! To put it all out there, to finally say the things that I’d been embarrassed to talk about (since I was 11 or 23 for that matter), to get a response I didn’t like, to be told I was crazy, to be told I was right, to be told I needed surgery. I was full of more emotions that I could possibly describe. But I left the appointment, for the first time in 4 years, feeling like I was finally on the right path. Dr. Palmer, from Oakdale OB-GYN, knew his stuff and I trusted him. He knew surgery was what I needed and though I had a lot of bowel issues pregnancy was our goal, so our surgical strategy was that of removing cysts, preserving fertility and restoring anatomy.

Three weeks later I had surgery. I had told him right before surgery that regardless of what my tubes looked like I wanted to keep them. When I woke up I was told I had a cyst the size of a grapefruit on my right ovary and another smaller on my left. My right tube was “gnarly” looking and my ovaries were stuck under my uterus and to the sidewall of my abdomen. I also found out that I had endo on both side of my abdominal walls and my uterus and colon were so adhered together that he wasn’t able to separate them without causing damage. We were happy to find out that both tubes were “open” and a month or so after recovery we started trying again.

In that same time I also started pelvic floor physical therapy and met with a dietician. PT helped tremendously but after a few months of trying, my bowel symptoms started to become worse to the point of nearly passing out. I scheduled to see him again and we decided that an MRI would be a good first step, because I really didn’t want to think about surgery again. The MRI came back showing a mass in the lower portion of my colon causing a partial obstruction. I had another colonoscopy to rule out cancer and almost immediately the doctor knew it was endo scar tissue working its way into my colon. From there we scheduled a dual surgery with a general surgeon, Dr Jenabzadeh, from Specialists in General Surgery, who would remove about a foot of my colon, where the endo was, and Dr Palmer would remove the new cysts, endometriosis lesions and adhesions that had formed as well as the bad tube discovered from the previous surgery. Surgery was successful and I finally went home 5 days later. Unfortunately, 2017 was the year of surgeries for me. I ended up having 6 surgeries over a 14 month time span. Only two of them were endometriosis surgeries, but nonetheless it was an eventful year! However, before the year was over we had one amazing outcome from it all: we found out Dec 22nd, 2017 that we were pregnant!

Endometriosis isn’t any easy disease to battle. Sadly, there isn’t a cure and many of us will go through many surgeries. But that being said, we can still live well, be brave and warrior on! I’m proud to be an endo warrior and I’m so glad I’ve met so many amazing women because of it. One of the reasons I’m so passionate about endometriosis awareness and especially education is that I had to dig to find the resources I needed to make good decisions and I know so many women would not have known to do what I did. These resources and this education needs to be mainstream and if it was more socially acceptable to talk about periods when I was younger I might have found out much sooner, which is why awareness of the of the disease and symptoms is so important!

Countdown to the 2018 Minnesota Endo March

Day(s)

:

Hour(s)

:

Minute(s)

:

Second(s)

Our online store is now LIVE! Click "Shop" at the top of the page to pre-order some of our items. Dismiss

%d bloggers like this: