March is Endometriosis Awareness Month. This is an awareness program that hits home for me because I have been dealing with endometriosis for 34 years. When I was 11 I had no idea it was endometriosis that was causing my issues. I actually didn’t find that out until I was 22 years old. After years of struggling with debilitating cramps and missed school or work I finally got told that I had endometriosis and was subsequently put on birth control pills and when that did not work I was put on Depo Lupron for 3 months. Finally when that did not work I was told I needed surgery to remove this mysterious (at least to me) endometriosis. After surgery I was quite a bit better for a few years and then the pain came back with a vengeance. It wasn’t just cramps either, it was upset stomach and migraines and feeling like I had to pee constantly. The doctor put me on Depo Lupron again and yet I had no improvements. If anything the pain got worse, so much so that it was no longer just during my cycle. At this point I got sent from one doctor to the next. Tested for things I don’t even remember. Some of these tests were incredibly painful. Each test showing no reason for the pain, each doctor recommending I go see a different specialist. At this time the internet was not the fountain of knowledge that it is today, but it provided better resources than it had several years before.
It was evident to me that I would have to take control of finding a solution because the only answer I was getting was that age 30 I would need a full hysterectomy to “maybe” help the issue. There was no definitive that it could and after researching I realized this was not the answer. Note: it has been proven that a hysterectomy does not mean you won’t get endometriosis. Thankfully I found that a specialist in minimally invasive gynecological surgery practiced out of Central Florida. I made the appointment, he did an exam and asked me some questions, and then ordered an MRI. Within days of the MRI the doctor’s office called to tell me I needed surgery ASAP. Within a few weeks I was getting wheeled in for my second laparoscopic procedure to deal with my confusing and painful illness. This surgery revealed not only more endometriosis and scar tissue, it also revealed what the MRI had shown… I had a prolapsed uterus. The recovery was painful, but it was worth the life I was finally able to have. The pain that had plagued me every moment of my life for over a year was finally gone!!!
That was 15 years ago. For almost 13 years I had few issues and it seemed like I was going to get life without endometriosis… until the discomfort started on the lower left side of my abdomen. I frequently felt like I needed to pee, even if I didn’t really need to. It was a constant discomfort. I was sure I had endo on my bladder. Unfortunately the whole process of getting this taken care of was just as frustrating as it has been so many years before. One doctor telling me there was nothing there and saying it seemed like my colon had an issue before they wrote a script for birth control and told me I should start having kids. The problem was that a) I don’t react well to birth control and b) birth control contains estrogen which feeds endo. Within 3 weeks I took myself off birth control and started the search for another doctor.
Luckily I was given a recommendation for a great Nurse Practitioner and got minor relief through adding progesterone to my system. It turns out I was estrogen dominant and lacking progesterone. I lived with the discomfort that still existed in hopes of putting off the inevitable surgery.
Finally the discomfort became too much and the upset stomach happened too often and it was time to find a surgeon. Thus began the next round of frustration. The first surgeon who had great reviews basically recommended medications and seemed reluctant to do surgery. So after exams, ultrasound, and MRI that revealed nothing except a cyst I decided to find a different doctor.
During the previous months of discomfort I was sure that not only was the endo back, but that I also had scar tissue creating problems. However, the challenge was to find a surgeon who would listen and understand. Thankfully I did find one. She actually listened and then agreed that I most likely did have scar tissue. We discussed the fact that the surgery could reveal nothing or that if they did find anything to remove I might need surgery again in the future. Thanks to months of research I was prepared for this.
Surgery was scheduled and when they opened me up they found a good amount of endo (including some very deep spots) as well as scar tissue. That doctor who months before told me I had a colon issue based on the pain I was feeling? He was right, in a way… I had scar tissue covering my colon and other areas. My surgeon said she has never seen anything like it.
Beyond being happy to be rid of the discomfort I was also thrilled to finally have proof of what I had been sure of for months.
This is just a brief history of my story. My reason for writing this is because we have to talk about it so that it gets more attention. So that we have more chances to get the help we need early on. Too many of us are still being told we have nothing wrong when we most definitely do have something wrong. Too many times a woman is put on medication that doesn’t fix the issue. Too many women don’t realize that endo could be causing not only issues with their cycle, but also be causing fatigue and bowel issues and bladder problems as well as other issues that are still being brought to light.
I wish I had known more about this 30 years ago. I wish I had realized that we each have to take ownership of figuring out our health issues and care because we can’t depend on the medical profession to understand what is wrong with us.
There is another side to all of this. The depression that you struggle with when you don’t feel well and can’t even explain why. The people who don’t understand that you are tired and uncomfortable which means that social activities can be stressful. Thankfully over the past few years of my struggle I have been with a man who was understanding about my frequent trips to the restroom or the days that I just felt like crap. That has made a big difference in keeping me from feeling so alone. I also found online groups who are dedicated to research endo and support those with it. It has been the best resource for my questions and fears.
Currently I feel pretty good, but some days are harder. There is also the lingering fear that I will always be dealing with this. It seems very few are ever truly free from endometriosis once they have it. However I try to keep those thoughts from taking over. I try instead to focus on the information that is coming out on how to alleviate the issues.