First of all thank you for visiting my page. I’m honored. This is my first blog post, and I thought the best place to start would be to introduce myself and explain my journey and why I do what I do in a bit more detail than what is included in the other pages on my website. So let’s get started.
Hi, I’m Tiffani.
I’m originally from Saginaw, Michigan, and am a die-hard Lions fan. This either proves to you I have wherewithal, loyalty and determination or that I’m just plain silly. I relocated to Tampa, Florida in 2004, the same year four hurricanes decided to pay us a visit.
I’m blessed with a smart, quirky, science/animal loving 11 year old daughter.
I’ve been married to the coolest cat since Friday the 13th of January 2017.
Most of my life, I grew up powering through those wretched days of the month, assuming pelvic pain during periods was normal. After awhile, more and more bowel issues set in. It was a struggle figuring out what the heck was wrong, not just for me, but for my doctors.
At the onset of serious cyclical bowel issues I suggested the possibility of endometriosis in 2014. That’s when my OBGYN suggested an ablation, or even a possible hysterectomy to cure it.
In search of a second opinion, I was told by a medical professional, “there is no way you have Endometriosis, you know why?, because you have a child and no pain during sex.”
So. . . in the meantime; in search of some more answers, I was diagnosed with the following;
- Irritable Bowel Syndrome
- 3 Ulcers
- Supraventricular Tachycardia (Cardiac Ablation in 2016)
The best way to describe my pain during my cycle was like my uterus was contracting around a pack of restless sea urchins. This is a frequent question I get asked, is “what does endometriosis feel like?”. As the disease continued to grow and affect my bowels it wasn’t just cyclical, it became more frequent to where the bad days dwarfed the good ones. It felt like I swallowed 100 magnets that distributed in all places throughout my colon and a master magnet was trying to pull them all out into the floor. When using the restroom the intensity was comparable; if not worse, to labor pains, in waves, so violent it caused me to vomit.
It wasn’t until September of 2017 that my gastroenterologist demanded my OBGYN perform a diagnostic laparoscopy because my sigmoid colon was blocked by something pressing on the outside.
The laparoscopy was performed and the doctor found Stage IV Endometriosis which resulted in “frozen pelvis” and obliterated culdesac. The ovaries were stuck to the back of the uterus, the uterosacral ligaments and the rectosigmoid colon. There was also superficial endometriosis found on my diaphragm.
Needless to say, that revelation was bittersweet. I was scared out of my mind because Endometriosis doesn’t have a cure but I had VALIDATION from the very doctor who said I couldn’t possibly have Endometriosis!
After seeing the surgical reports and images, the opinion of two excision specialists was, there is a reason for every symptom that you have experienced and that it is not due to your “stressful job”. We recommend excision surgery.
Leading up to my excision surgery I was mostly bedridden; however, I like to stay busy and the things I took most pleasure in was/is sewing and taking photos of birds in my backyard.
During this, my family and friends watched me transition from being a social butterfly to hiding under a rock anticipating the next “Flare” taking place.
This disease lead to a diagnosis of PTSD which I still struggle with today even though the symptoms are much more manageable.
While I was still able to commute to the office downtown Tampa, I handcrafted a heating pad that attached to my seatbelt to make my commute more manageable. Then I started making them as Christmas gifts for family and friends. A few supportive friends requested the heating pads for themselves and others so I started Tiffani Long LLC in November of 2018. I remember feeling accomplished having made myself a heating pad out of necessity. Today I am just so very proud and blessed to have helped others like me, while raising awareness to our awful disease.
Hardest part dealing with this disease other than the debilitating pain, is the effect it has on my family. I feel like a burden, and watching myself not being able to make the same kind of commitments, even the basic ones, I could previously really wears me down, especially in a new marriage and having the demands of a growing child. But I do the best I can and consistently try to make peace with that as they are incredibly supportive. Plus, I’m pretty funny so I like to think some of my jokes make up for it ?
After a series of theoretical treatments an Excision Surgery and Bowel Resection was performed on May of 2019. I am recovering and fortunately, with a lot less pain. The superficial endometriosis on my diaphragm ended up being deep infiltrating so another surgery is needed but for now it appears the bad days have some competition.
The reasons I share my story are;
To give hope and support to those diagnosed with the disease no matter what stage or limits you have. You ARE strong, and more importantly YOU ARE NOT ALONE.
The other is to spread awareness of Endometriosis, the lack of knowledge and misinformation spread amongst the medical community is preventing individuals from receiving proper care, and delaying diagnosis. In my experience, hormone treatments mask the symptoms and do not treat the disease.
The third is to express that the gold standard for treatment is excision surgery with a qualified specialist (And by specialist, research carefully) I urge you to realize the NECESSITY to be your own advocate, knowledge is power and no one understands your body like you.
Until next month, take care,