Valentine’s Day is a day that I, like many, celebrate love.  On Valentine’s Day last year, I gained a newfound appreciation for this day, and not in the traditional sense.  Tomorrow is the one year anniversary of my excision surgery for Endometriosis. It is the anniversary of the greatest gift I could’ve given myself, because it is the day that I showed myself some love and took back my health.

Endometriosis is a disease where tissue that is similar to the lining of the uterus grows in places in the body where it shouldn’t.  It follows your monthly cycle, and causes inflammation and pain.  Prior to Valentine’s Day 2018, I dealt with chronic pain and other related symptoms of Endometriosis (Endo) for 10 years.  Although, when I look back at my life through my teenage years, I had symptoms that started as soon as my cycles started.  I thought it was normal, as many women do, and brushed it off as an “oh well, I’ve heard that cramps are supposed to be painful, and bleeding can be heavy I guess”.  I was on some form of hormonal birth control to try to control cycles and pain for 10 years, yet my symptoms were always there.  The hormones in the birth control did seem to help a little, and I just kind of accepted that this was my life and what I was going to deal with.

When things started getting worse, I started seeking care. I went to four different doctors within three years, because I unfortunately felt brushed off and dismissed by three doctors in a row.  I had done my own research, and I felt pretty confident that I had Endometriosis, but none of the doctors that I saw seemed to agree with me.
I finally found an ObGyn that listened to my symptoms and agreed that I was most likely dealing with Endometriosis.  Since the only way to officially diagnosis Endometriosis is through laparoscopic surgery, we agreed that this was the best way to proceed.  I had my first laparoscopic surgery to diagnosis and “treat” Endometriosis in 2011.  My doctor found Endometriosis on my left ovary, bowels, and left pelvic wall, and he gave me surgical pictures of what he found.  He told me that he burned/lasered off what he could and that my options going forward would be to either start taking a medication that would shut my ovaries down for six months, putting me into chemical menopause at the age of 29, or to try to get pregnant.  I really didn’t like his options.  Chemical menopause sounded horrific to me, not to mention the side effects of the medication included hair loss, weight gain, and bone density loss.  I was also really not ready to be pregnant at this stage in my life.  So, I took my health into my own hands, and I was on an absolute mission to make myself better through alternative methods.

I tried many different things over the course of six years.  I researched and tried a lot of herbal supplements to try to balance hormones, relieve pain, shorten cycles, etc.  I cut out certain foods and I also went to acupuncture regularly.  While all of this seemed to help a little, that nagging and sometimes extremely sharp, knife-like pain never went away.  It just got worse as time went on.  I cried a lot and suffered in silence most of the time.  I didn’t want to talk about my pain because I didn’t want to seem weak or like I was unnecessarily complaining.  A few times when I had opened up to someone other than my spouse or family, it seemed as if no one really understood what I was going through.  I was in pain for three weeks out of a month, on average.  I also had nausea, headaches, iron-deficiency anemia, extreme fatigue, gastrointestinal issues, abdominal swelling and bloating, and infertility.  I couldn’t exercise regularly due to pain.  I had days where I could barely walk because it felt as if someone was taking a knife and stabbing me through my “undercarriage”, and like my left ovary was in a vice grip and was being twisted for hours at a time.  I tried my best to deal with the pain and never really expressed to anyone that I was suffering so much.  It was depressing.  I just wanted to be strong and fix myself, but nothing was working long-term and I was really frustrated.

Thanks to social media, I joined a couple of different support groups on Facebook for Endometriosis.  It really helped to know that there are many others (an alarming estimated 1 in 10) that deal with this disease that no one seems to really talk about, and we were all looking for ways to improve our health and get rid of pain.  I’ll never forget the day that someone mentioned a particular Facebook group called Nancy’s Nook Endometriosis Education, and I couldn’t be more thankful.  Nancy’s Nook is an educational Facebook group for Endometriosis patients and healthcare professionals.  Everything is evidence/science-based, and it functions like a library.  I spent an entire week reading through all of the research and previous posts.  My mind was blown by all of the information that I came across.
I learned that the closest thing that we have to a cure is excision surgery by an expertly trained surgeon, and that the average gynecologist has not been expertly trained to recognize all of the forms and colors of Endometriosis, nor have they been trained to properly treat it through excision surgery.  I was happy to find out that there were two recognized, expertly trained excision surgeons in Minnesota (there are now three!).  After a week of intense research, I called Dr. Matthew Palmer’s office at Oakdale Obstetrics & Gynecology, and scheduled a consultation with him the following week.  I was so excited to meet with him, and I just knew that my life was about to change.
At my consultation appointment, we agreed that my Endometriosis had most likely progressed through the years, and that a laparoscopic surgery to check things out and to excise whatever he would find would be the next best step.  I knew that I was finally in great hands, and I cried tears of relief at that appointment.  My surgery went extremely well.  He found that my left ovary, uterus, and bowel were all stuck together, and all of that was adhered to my left pelvic wall.  All of the areas my previous doctor had burned off came back with a vengeance, and it was worse than what either one of us had really expected.  Things were so bad on that left side that the disease took over my ovary, and my ovary and tube needed to be removed.  I had a large nodule of Endo on my round ligament, which required repair after the nodule was removed.  He excised everything that he found.  I felt so validated, and very thankful that I had found him and that he had gotten rid of that giant painful mess in my body. My pain was very real.  I was sick for a very long time, and everything had gotten worse despite the years of hormonal birth control and alternative treatments for pain and cycle regulation.
I have been essentially pain-free for the past year, and I sometimes don’t know what to do with myself.  My new normal feels like uncharted territory.  I can’t believe that I lived with that level of pain for so long.  While there is no cure for Endometriosis, I feel like I’ve been given the best possible chance to move forward in my life without the chronic symptoms that I dealt with before.  I’m unfortunately dealing with another condition that is common with Endometriosis, called Adenomyosis.  Dr. Palmer is helping me manage this, and I fully trust his expertise and care for this condition as well.

I will be forever grateful to Dr. Palmer, and to everyone who assisted with my surgery and helped to take care of me.  I’m thankful for my family, and my wonderful, supportive husband who has been by my side for the past seven years.  I’m thankful to be a dog mom to my fur baby, Daisy.  While things aren’t exactly the way I’d like them to be, I’ve accepted the cards that I’ve been dealt, and I have a new outlook on life. After all these years, I’m finally able to live my life without chronic pain. I’m able to exercise, and I’m training for my first ever long run – a 10 mile race!  I can’t wait to go hiking and enjoy other outdoor activities this year without pain and fatigue.  I will continue to be a voice, and to bring awareness to this horrible disease.  By sharing my experience, and becoming more involved in advocacy efforts, I hope to do everything that I can to help others in their journey.  Please don’t continue to suffer in silence like I did.  Pain is not normal!  Sending out love to all of my fellow Endo Warriors this Valentine’s Day!

— The Minnesota Endo Warriors are proud to share Mandi’s endo journey and are committed to providing a place of community and comfort to those living with endometriosis and their loved ones.

Countdown to the 2019 Minnesota Endo March

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