Kim’s Truth: Breaking the Silence Around Endo and Adeno

I am an experienced RN, BScN of 20 years, and my biggest question today is, how did it get to this point?? I felt I was a fairly knowledgeable woman who consistently advocated for myself, only to be shut down and gaslit time after time.  

My name is Kim, and this is my Adenomyosis/Endometriosis story.  Today I am happy.  I feel grateful for my surgical team and surgery. I honestly feel like I received world-class care! Dr. Lemos has given me a second chance, and I truly feel like the luckiest.  My purpose in sharing is to give awareness and speak openly and honestly about my experience.  Adeno/Endo is life-altering.  It is painful, lonely, and exhausting.  My journey started 29 years ago, when my family doctor put me on the birth control pill at 15 years old for painful periods.  Considering Endometriosis affects 10% of women in Canada, sadly, my story is most likely very common if not worse.

It is important to recognize that this is my own story and no 2 experiences are the same. My hope is that others may recognize bits and pieces of this story and feel less alone. I also believe it is important to recognize that some women suffer far worse, or not as badly, and everything in between.  The point is your health matters and your story matters.

I was super athletic growing up and participated in competitive sports, was a camp kid, and loved anything outdoors. I can remember my periods being annoying and making me feel “heavy”.  At that time, the knowledge I had was that exercise is good for the pain, so throw a tampon in and carry on!!  My mom brought me to the family doctor at 15, and I stayed on the BCP until I was 26 years old and was ready to start a family. 

I received my first “abnormal pap” phone call when I was 19 and away at College.  From that time, I have experienced 20+ paps (most of which were done in a Colposcopy Clinic), 3 High Grade Intraepithelial lesion (HSIL) occurrences prior to age 26, 1 laser excision, 2 LEEP (Loop electrosurgical excision) procedures for cervical dysplasia aka CIN, (cervical intraepithelial neoplasia) which means abnormal growth of cells on the cervix’s surface.  All which leads to confusion  (LSIL, HSIL, CIN, NOS, ASCUS ....cervical biopsy terminology) and cancer fears.  I thankfully did not end up with cervical cancer, but the chase sure felt real.  Second to the multiple procedures, I am left with lots of scar tissue.  Add my 2 C-sections, and apparently you have the perfect environment to encourage conditions like endometriosis……

I started complaining to my OB/GYN in 2018.  I was 36 years old and had 2 healthy, beautiful baby boys.  I did have an ultrasound that identified Adenomyosis.  I had a flash conversation with the GYNE, he said I would not be a candidate for an IUD due to my  “incompetent cervix”, an ablation may/may not help, hysterectomy would be your last option.  In the moment that sounded insane, therefore conversation-over.  I didn’t know what Adenomyosis was…. A condition where my menstrual bleed gets stuck in the muscle wall of my uterus, equaling painful periods? I just filled the prescription for Naproxen and carried on with life. 

Fast forward years later, I complain to my family doctor that something is not right with my bowels - I am referred and seen by a Gastrointestinal specialist, they understood my clinical symptoms (diarrhea, bloat, gas).  I had an upper and lower scope done, and the findings came back normal.  I asked, "What is wrong with me then?". They said I have IBS and gave me a prescription for Domperidone.  

I need a new Gyn - I am seen and worked up by a female team who made me feel heard and seen.  I thought this was the answer to my prayers.  I did all the diagnostics, including thyroid, abdominal, and internal pelvic ultrasound, which included bladder study and blood work of course. 

When I returned for the follow up the doctor gave me the printed copy of my test results and said everything was normal.  I was shocked, speechless, and very emotional.  I said, "what about my pain? Do I have endometriosis? Anything?".  The female gynecologist replied, “I don’t know if you have endometriosis!?”  She then tosses me a prescription for Lupron.  I asked what this was for? She said,  “It is an injection that will put you into menopause.  If your pain goes away then we know you have endometriosis”.  I drove home in a puddle of tears.  After doing my own research, I decided I was not going to fill the prescription.

I felt like I was in an abyss, or some terrible nightmare.  Why was nothing wrong with me yet I KNEW something was terribly wrong with me.  Why were these doctors listening but NOT listening to me?  I never once had a conversation with any doctor about endometriosis. My best friend is a Nurse Practitioner, and for years she would gently throw in comments about endo, and always suspected.  Yet for years after being followed by doctors so closely, why was my pain being dismissed??

My pelvic and leg pain became debilitating.  I would say generally my body felt “heavy and achy”.  During my menstruation phase, the pain sky-rocketed.  It literally felt like I was stuck in cement, and I could not move.  I would be in the bathtub at 3 am before work, just trying to get my pain, bowels, and anxiety under control before I had to go act like a professional!  My periods were heavy but only lasted 4 days.  Fortunately, I was always regular, and knew when it was ready to drop.  I also believe I suffer from PMDD (premenstrual dysphoric disorder), to which I vaguely remember mentioning it to my family doc at some point, and his response was, "huh?", and to be honest, I think he said, " Is that actually a thing?"

I started to feel desperate. My mental, personal, and professional life were taking too big of a hit. Things got dark, and I knew I was sinking quickly.  After my last unfortunate experience with the gynecologist who completely dismissed me, I realized I needed to take matters into my own hands.  I spoke with my family doc about my anxiety and feelings of depression.  I started taking Paxil and would take Ativan when things got really bad.  I knew something was wrong with my body, but I was also getting tired of fighting. I spent time searching the internet and came across a list of multiple doctors that specialize in Endometriosis.  This is where I found Dr. Lemos. 

 I am now post-op TOTAL LAPROSCOPIC HYSTERECTOMY, BILATERAL SALPINECTOMY EXCISION OF ENDOMETRIOSIS, APPENDECTOMY, AND CULDOPLASTY. 

I read my OR report, and the findings were shocking.  My sigmoid colon was adhered to my pelvic wall, there were retro cervical nodules, a widened cul-de-sac, and an enterocoele.  My hypogastric nerve and inferior hypogastric plexus were identified and released.  Shocked but not shocked, considering how quickly I experienced relief post op. And yes, there was lots of “Googling” to understand what the heck that all meant!

A common question I receive is, "how did you get your Endo diagnosis?”.  My answer is, winter 2024 when I had my first virtual appointment with one of Dr. Lemos' residents.  She was an angel, and asked me to tell her about my periods, share my story.  After listening to me, she clearly explained that she was 100% confident that I had Endometriosis.  I cried, and cried.  No diagnostics. Just listened.  Kim, you have Adenomyosis, and you also have Endometriosis.  

Luckily, I have a beautiful partner, family, and friends that support me, and give me the space to heal.  I work hard to stay positive and motivated to move forward in a hopeful direction. I prioritize moving my body and staying nourished as best I can.  I had a very positive post op experience thus far, with more good days than bad. When the tough days pop up I am gentle with myself.  I know the journey is not over and there is lots of healing yet, but I am proud of how far I have come!

The road is a complicated one with missed or under-diagnosed conditions and an absolute disregard for pain.  We should NOT normalize pain and push ourselves to the point where we become a shell of ourselves. This is not (just part of being a woman) birth control and NSAIDs are not a solution.  And please, can we start addressing the amount of time it takes for a woman to find some relief let alone a permanent solution?  I previously mentioned that I consider this to be my 29th year on this journey…..  Within those 29 years, I have been fortunate to live in a country that provides free health care and access to doctors.  All from different types of specialties that I trusted to help me.  The gaslighting is quite frankly dangerous, and the ripple effect within relationships, responsibilities, and one's self-identity is severe.  There is no sugar coating it.  When I say “dangerous” I mean this is our LIVES! We can only endure so much pain, grief, and confusion before our mental, physical, and spiritual health dampens, and we completely lose our true selves and get lost in the abyss. 

To the women who have suffered far worse, who experience worse symptoms, who have had more hospital visits and procedures, who have tried more medications, and continue to feel sicker as the years go by, I am sorry.  I hear you, and I care about you.  There is a light at the end of the tunnel.  It is long, but you can do it!

 I feel grateful to be rid of the disease I never knew I had, but knew I had. 

                                         Kim Targon 🤍