Share Your Scars: Jenna, Endometriosis

This blog content is strictly based on personal experience and condition of the writer, Vital You does not make any medical claims in the cause or cure of the condition and treatment.

-Tell us a bit about your condition and when it began:

 My journey with endometriosis (endo as I will refer to it through this story,) has been, well…a journey. My experience, like many other “endo warriors”, includes not being taken seriously by medical professionals, an array of misdiagnoses, and many painful days and nights. And on the contrary, this condition has also allowed for some of the most cherished items in my life, as it fueled me to start my business, Vital You, it has connected me to others with this condition and has also allowed me to better understand my own strength and vitality.

For me, my pain became unbearable and no longer able to ignore in 2017. I remember the moment so vividly, of what I can now say was one of my first flare ups. I ended up in a fetal position on the bathroom floor screaming in pain. I felt like someone was stabbing my ovaries, and all I could do was cry out. This event began my 3 year quest for a proper diagnosis. 

Endometriosis by definition is a disorder in which tissue similar to the tissue that normally lines the inside of the uterus-the endometrium-grows outside of the uterus. This can cause irritation, scar formation, adhesions, severe pain during periods, fertility problems, intense cramping, bloating, pain with sex, inflammation, and more. Despite how common this condition is, affecting 1 in 10 *women of reproductive years (1), the average amount of time it takes for the disease to be properly diagnosed is 7 years. Endometriosis is most commonly associated with females and the uterus, however, although extremely rare, can be found in males, and other areas of the body such as on the bladder, lungs, and even brain. (2)

 My endo symptoms mainly present through urinary troubles and discomfort,  pelvic pain, and GI-symptoms. When I received my true diagnosis, which is most commonly done through laparoscopic surgery (3), it was found that my endo was/is mainly on my bladder, along with my pelvic side walls and cul-de-sac (area between the rectum and back wall of the uterus). 

*people who were born with a uterus, we accept and acknowledge all gender identities and expressions of self.

-How has this condition negatively impacted your life?

For me, the hardest part of this condition was not being taken seriously for so many years and the constant fight and struggle I have undergone for care. Looking back at the emotional toll it took on me going to doctor after doctor, where I would walk into my appointment so hopeful thinking, “this is going to be it-this is when I am finally going to get my answers.” And leaving the appointment feeling heartbroken, lost, confused, and completely misunderstood. It’s those moments looking back-those moments after the appointment, after yet again not feeling understood by another professional, where I would bawl by myself in my car, curl up in a fetal position on my bed, and feel more alone than ever that stand out to me the most.

Below is a list of all the misdiagnoses and sentiments I have received from medical professionals, for both comical relief and reference:

-2017, OBGYN: “oh, it’s just a yeast infection, I’m prescribing you an antibiotic”

-2018, urgent care: “We haven’t gotten the urine culture back, but it is probably a UTI. I am prescribing you antibiotics”

-2018, after an ultrasound: “appears to be simple ovarian cysts, nothing to be worried about. Totally normal. If you continue to have pain go see your OBGYN”

-2019, urologist: “You’re probably just constipated and prone to UTI’s. Start taking psyllium husk and cranberry pills”

-2020, a different OBGYN: “A lot of things can cause pelvic pain. But I can go in there with a laser and take a look, if you want”

This is the hardest aspect of this condition for me to live with-knowing that there are millions of women with undiagnosed endo in this world that are going through their lives in pain every single day.

-How has your condition positively impacted your life?

 The unnamed pain I was experiencing in 2017 is a huge part of what fueled my passion to start Vital You. Taking a bath was one of the only things that brought me relief when I was hurting, and I created the bath bombs as a way to incorporate all of the healing modalities I was using to holistically help my pain into one, cohesive product. I saw how there was not another product like this out there, and since it was helping me so much, I wanted to do anything I could to bring this level of healing into other people’s lives.  

-How do you find emotional/communal/informational support with your condition?

My family and friends have been such rock stars and support systems for me. My Mom always answers the phone when I need to b*tch about my symptoms or another disappointing appointment, and she was there for me throughout my surgery and recovery. My Dad, a physician, helped me write my questions for my pre-op appointment so I would know exactly what to ask my surgeon. And if it weren’t for my close friend who has endo and said to me one day, “Jenna, I think it might be endo,” and suggest a local specialist, I would still be here questioning my symptoms without answers.

If you are wanting to learn more about endometriosis, the resources that helped me the most are the book “The Doctor Will See You Now: Recognizing and Treating Endometriosis”

by Tamer Seckin, or “Beating Endo: How to Reclaim Your Life from Endometriosis” by  Iris Kerin Orbuch MD. Additionally, there is a Facebook group called “Nancy’s Nook” that has been helpful for me throughout my journey.

-How do you find relief of physical symptoms?

When I need relief I reach for a Warrior (the bath bomb I formulated specifically for endometriosis/pelvic conditions), or Flow bath bomb, followed by a rub down of Goddess Butter or Deep Relief Salve on my body. I am also a proponent of CBD suppositories, Foria has wonderful ones, or I also make my own at home. I also use essential oils and warm compresses or heating pads-I enjoy a base of almond oil mixed with drops geranium and clary sage essential oils to rub on my belly & I do some at home maya abdominal massage. I also recently got a pelvic wand, and it has been a game changer. Additionally, I see a pelvic-floor physical therapist bi-weekly, get regular acupuncture and massage, get outside as much as possible and try to eat as much of an anti-inflammatory diet as possible, (but dang do I love my coffee and cocktails ;) )

I feel so blessed to be surrounded by the strong community that Vital You has created. I freaking love my business and clients. The most beautiful thing for me has been meeting so many other people with endo through Vital You. It seems like the more our community grows, the more people with this condition I meet. And knowing that Vital You products can bring some relief into their lives and experience, makes me feel like I am fulfilling my calling in life.  

-Is there anything else you wish to share?

I would like to make a declaration about this new blog series, Share Your Scars. We, the team at Vital You, created this blog to be a vulnerable, open-hearted healing narrative. We have created this platform for people in our community to safely and openly share their experience about their conditions. Please enjoy these stories, comment below and reply with notes of love, understanding, or similar experiences. And if you would like to contribute your story and share your physical or emotional scars, we would love to hold space for you & invite you to email us at vitalyouproducts@gmail.com.

Thank you, from the bottom of my heart, for reading my story and for being an integral part of the Vital You community.

Reference:

1) Center for Endometriosis Care. https://centerforendo.com/

(2) NCBI: An unusual cause of abdominal pain in a male patient: Endometriosis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4183904/#:~:text=The%20occurrence%20of%20endometriosis%20in,with%20a%20history%20of%20cirrhosis.

3) Wood, Ros. Surgery http://endometriosis.org/treatments/endometriosis-surgery/