Endometriosis Journey

I will start this post by prefacing that this isn’t like the typical blog posts I publish on my site. I typically keep my posts light hearted and stick to fashion and travel. I think it is extremely important for me to open up and share my journey with others, especially since so many women are impacted by endometriosis. Unfortunately, as I’ve had to learn the hard way, endometriosis is significantly under researched, under funded, and there is an extreme lack of overall knowledge regarding endometriosis within the medical community. According to the World Health Organization (WHO), Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally. It is astonishing to me that so many women suffer and there is still lack of action, which again is why I feel it is important for me to share my journey with you.

If you are not familiar with endometriosis, I have included a screen shot of key facts from the WHO.

When I first went through puberty, I experienced that awkward stage we all face as adolescents and was so extremely embarrassed when I got my first period – I didn’t even want my parents to know. I of course told my mom and we had previously discussed that it would happen, but I wasn’t prepared for what that would entail. During my adolescent years, I experienced horribly debilitating periods, which I thought was completely normal. I was always taught that periods were extremely painful and that I just needed to suck it up and deal with it. I remember waking up in the middle of the night in excruciating pain and having to stay home from school or get picked up from school because I had either bled through my clothes or had debilitating cramps. I went on a camping trip with my dad and his friends when I was in eighth grade and had the worst cramps, blood clots, nausea, vomiting, and headache I had ever experienced from a period. My mom drove four hours to pick me up and we went to a hotel, I took Ibuprofen, and laid in the fetal position all night. During this time of my life, I also experienced ovarian cysts and the rupturing of ovarian cysts, which sent me to the ED multiple times. Never during this time did the doctors I saw ever mention endometriosis or look into the root cause of my overall pelvic pain issues. I know now that THIS IS NOT NORMAL and are red flags for endometriosis. If you have a daughter or have experienced this yourself, PLEASE ask your doctor about endometriosis.

Throughout my adolescence and teenage years, I continued to suffer during that time of the month and would feel so incredibly sick/in pain at school, during sporting events, while playing with my friends, etc., which is not something a young child should have to experience during their adolescent/teenage years. My mom thankfully made the decision, with my OB/GYN to put me on birth control around the age of 15 or 16. Birth control may assist with management of endometriosis symptoms and prevention of the progression of endometriosis. Thankfully, birth control helped me manage all of my symptoms, lightened my periods, and gave me my life back again for a considerable amount of time. As always, you should consult with your primary care provider before starting a new medication, I am sharing what worked well for me.

In 2016, I had an ovarian cyst rupture and went to the ED, which was a horrible experience. I was misdiagnosed with PID then an ectopic pregnancy then a large ruptured ovarian cyst. Again, none of the doctors I saw mentioned endometriosis or ever looked into the root cause of my excruciating pelvic pain. Mind you, I routinely saw an OB/GYN during this time, had discussed my medical history and no red flags were ever raised during this time.

In 2018 and 2019, I noticed I had increasing pelvic pain and a range of various symptoms, such as intermenstrual bleeding, painful periods (dysmenorrhea), painful intercourse (dyspareunia), painful defecation (dyschezia) and painful urination (dysuria), chronic fatigue, significant bloating, etc. despite being on birth control. We moved to the Phoenix area at the end of 2019 and established care with an OB/GYN in the Phoenix area. During this time, we again discussed my medical history, pelvic pain, ovarian cysts, symptoms listed above, and again, no red flags were raised and endometriosis was never brought up as an item for discussion.

In 2019, one of my best friends had surgery for endometriosis and after her surgery, we started talking about her symptoms and her overall experience. This conversation made all of the alarm bells go off in my brain and I started recognizing many of her symptoms as my own. I made an appointment with my OB/GYN a few weeks after and asked her if she had suspicions of me having endometriosis. We went through my clinical symptoms and medical history, discussed my mom’s previous endometriosis diagnosis at around the same age, and based on clinical evidence, I met the clinical definition for endometriosis. I then had a pelvic ultrasound, which showed again multiple ovarian cysts, which we kept a close eye on. Endometriosis affects 10–15% of all women of reproductive age and 70% of women with chronic pelvic pain. Unfortunately, for many of these women there is often a delay in diagnosis of endometriosis resulting in unnecessary suffering and reduced quality of life. In patients aged 18–45 years, the average delay is 6.7 years. Throughout 2020 and 2021, I switched my birth control numerous times to see if that would help and started pelvic floor physical therapy. The pelvic floor physical therapy was amazing and I highly recommend it, but it only provided me very temporary relief and both my physical therapist and I felt I was past the point of physical therapy and required additional medical intervention. I started feeling frustrated during my OB/GYN appointments because my provider continued to recommend changing birth controls, physical therapy, and ultrasounds even though I wasn’t making much progress.

In September of 2021, I called my provider’s office and requested a referral to a pelvic pain and gynecology specialist as I felt I needed heightened care, along with a second opinion. Seeing a specialist was the best decision I have ever made for myself and my care. It was the first time I felt like my concerns had actually been heard and considered. Based on my significant medical history, chronic pelvic pain, family history, medical imaging, pelvic floor therapy, and clinical criteria, my specialist also knew I had endometriosis. I had a pelvic MRI a couple of months after my initial appointment then was scheduled for a laparoscopic resection of endometriosis shortly after that.

I had my surgery a week and a half ago and already feel it was the best decision for my overall health. I knew something was wrong with my body and I am so glad I listened to my gut. I’m also so glad I continued to advocate for my health and did not allow misdiagnoses and providers brushing off my symptoms stop me from getting the care I needed. My surgeon found endometriosis, which was much worse on the left side. My left ovary was adhered to my pelvic wall with endometriosis, there was endometriosis on my left Fallopian tube, and had sporadic endometriosis on the right and middle sections as well. He was able to successfully remove all of the visible endometriosis without damaging or removing any reproductive organs, which is such great news! This will help improve my chances of being able to naturally conceive in the future. It is estimated that 30%–50% of women with endometriosis have an infertility problem. This is a very intimidating statistic and I pray this is not something my husband and I will have to experience. The first 2-3 days after surgery were painful, but I am already feeling so much better and can’t wait to start my post-surgery life once I am completely healed. Unfortunately, this surgery is not a cure and there is currently no cure for endometriosis at this time, which is why we have to continue raising awareness and advocating for this illness. My endometriosis journey has not been easy, it has been frustrating, complicated, expensive, exhausting, painful, and has impacted my life in various different ways. If you are suffering from endometriosis, please continue to seek the help and care you need and please don’t give up. Continue to seek providers who listen to your concerns and advocate for your health as much as you do.

Here are some helpful links I utilized within this post:

I hope this post helps just one person currently going through their own endo journey, someone who resonates with these symptoms, or someone looking to learn and advocate for endo warriors. Thank you for taking the time to read this extremely personal post.

Xoxo,

Jonica

Like this:

Leave a Reply Cancel reply