Its probably endo…
“You probably have endometriosis, but there isn’t anything anyone can do about it.” That was my first memory of a doctor talking to me about endometriosis. I was about 14 and went to my primary physician because I was having extremely painful periods and mood swings that just didn’t seem normal. The solution was to go on birth control and ‘deal with it’. I ‘dealt with it’ for the next 13 years and continued thinking that this was ‘normal’. “Take some ibuprofen and it’ll subside,” was pretty much what any ob gyn, family member or friend said when I shared how difficult my periods were. In retrospect it has always been pretty ‘normal’ in my family to have painful periods, so in my mind this was just something I would have to suffer through. Because, it was normal after all.
During college I had a Mirena IUD and that helped tremendously when it came to managing the pelvic pain associated with my menstrual cycle — mostly because it made it so I didn’t have one. But I still dealt with unusually intense mood swings during my cycle which, at the time, I attributed to my ongoing battle with anxiety and depression. But then I started having even worse mood swings, to the point of not being able to control my emotions at all. When I went in to my ob-gyn, it was discovered that the mood swings were due to my IUD needing to be removed and, basically, my hormones were all out of whack. And then began the struggle of heavy and painful periods once again. The mood swings mellowed but were still present at peak times during my cycle.
The Tipping Point
The next few years I would go on and off birth control, sometimes finding relief for my symptoms, sometimes not. And then came the beginning of 2018, after I had been off of birth control for more than a year, when month by month my symptoms began getting progressively more excruciating and more and more frequent. I also began experiencing symptoms I had never experienced in the past. Among the many symptoms I began experiencing, was excruciating pelvic pain and cramps that began occurring frequently, and not just during my menstrual cycle. At any time I could have a debilitating bout of pelvic pain that would leave me bedridden and unable to move. My mood swings became more intense — I could go from being perfectly fine to bawling my eyes out for quite literally no reason. Migraines that I had frequently experienced years prior began coming back in full force. And my already heavy periods, got heavier and the fatigue associated with them worsened. All of these symptoms began affecting my ability to go to work, my social life and relationships.
It was difficult to talk about with my friends, family or my boyfriend, because no one could quite understand the pain I was feeling or how to explain it. As the pain worsened, I started to wonder if I would have to live like this forever. But I kept thinking that there just had to be a way to heal this pain and get some answers.
Around May 2018 I saw Britt Pangerl begin to share about the Minnesota Endo Warriors on her Facebook. I thought, “hmm, endometriosis, I’ve had a doctor tell me I have that before.” So I began following the blog and reading all of the resources they had available on their website and learned about excision surgery and the surgeons who specialized in Minnesota. After researching everything available on the website, I decided I needed to make an appointment with Dr. Palmer of Oakdale OBGYN and get an opinion by someone who specializes in endometriosis.
I had to wait a couple months for my appointment and was so relieved when I finally was able to see a professional who was willing to listen to my symptoms, and not dismiss the pain I experienced as ‘normal’. While at my appointment, I had an exam and an ultrasound where a fibroid was discovered — which signaled a high level of estrogen and an indication that endometriosis was the possible reason for my symptoms. Dr. Palmer recommended undergoing laparoscopic surgery to diagnose but that it was ultimately my decision. I pondered this for a few months and finally decided that I would have the laparoscopic surgery in hopes of diagnosing and removing any endometriosis that may be present in my abdominal cavity.
For months before the surgery I was scared and anxious and kept thinking, “What if I undergo the risk of surgery, the time to heal and not to mention the financial expense all to just discover I don’t have endometriosis and still have no answers for all of this pain.” My boyfriend reminded me that at least I would have answers and to trust that it was better to know and have definitive answers than to not. This reminder helped me remain positive and ease my anxiety about the surgery and the answers that may or may not be a result.
On December 1, 2018 I underwent laparoscopic surgery with Dr. Palmer and I remember waking up from surgery and asking Dr. Palmer immediately when he came out to see me, “Did you find anything?” And he confirmed he found and removed multiple adhesions from near my colon that he suspected were endometriosis. At my post-op the biopsy results confirmed endometriosis and while I’m not certain the stage (I believe it was 1 or 2) Dr. Palmer seemed confident that because he was able to remove the adhesions and they were not deep or widespread that hopefully I would not have to undergo another surgery— at least for a long time. For this I consider myself very fortunate. I have read and heard of so many stories of women whose journey is far longer, more invasive and requires multiple surgeries. I think it is also so important to fight the urge to compare our journey to others. Whether we think our symptoms are ‘not as bad’ or ‘way worse’ than someone else does not mean that we should try to dismiss our pain or someone else’s. Endometriosis affects everyone uniquely and causes suffering. I have seen so much support in this community and I know how intense my pain was (at a stage 1 or 2) that I have such compassion for those who have endured far more widespread and advanced disease. No matter where you fall in the amount of time your journey has taken, how advanced your stage of disease, it’s important to remember that you are a fighter and a warrior.
Even after surgery the road to pain-free life was not easy or fast. I had terrible nerve pain for the first few months after surgery, but slowly but surely have felt better and better each month that passes and am thankful that the Minnesota Endo Warriors has provided so much resources during this time in terms of online and in-person support groups. Hearing about other warriors experiences has given me the courage, confidence and faith that healing is possible and I am so grateful for the work the MN Endo Warriors is doing.
I hope by sharing my story, other women who are in a similar situation and have been told their pain is ‘normal’ and to just ‘deal with it’ find reassurance that extreme, chronic pain is not normal and while a cure for endometriosis is not possible, healing is.
Countdown to the 2020 Minnesota Endo March