Unveiling Invisible Illnesses – Endo and Interstitial Cystitis with Francesca

Endometriosis is when tissue similar to the lining of the uterus spreads outside of its home to other organs, causing pain and inflammation. It can begin as early as the first mensuration. It is estimated that 1 in 10 women suffer from endo. There are many theories about cures and causes but more research is required to get the answers we need and spreading awareness is a start.

Francesca has started an online support group years ago and is on the battlefront paving the way for young women. Five years ago, she had a laparoscopic excision done by Dr. Sinervo and no longer experiences endometriosis as her chief complaint. Her main issue now is Interstitial Cystitis, or painful bladder syndrome that causes pelvic discomfort. Francesca is also seeing specialists for other health issues like Orthostatic Intolerance.

What is your official diagnosis?

Endometriosis, Interstitial Cystitis, Pelvic Floor Dysfunction, Irritable Bowel Syndrome, and Orthostatic Intolerance.

How long did it take for your first initial symptoms to get an official diagnosis?

Four or five years for Endo, IBS, and PFD. Two years for IC, and about six months for OI.

How have your illnesses affected your daily life?

Currently, I no longer suffer from Endometriosis pain, but I do suffer daily with PFD and IC pain. I also struggle with dizziness and heart rate/blood pressure problems daily due to OI. I struggle every day to work, go to school, and balance a social life.

Do you have any advice for those who are newly diagnosed?

If you feel your doctor is not listening to you, it’s always best to seek a second opinion (or even more if you have to) until you feel you have found the best care. Always be your best advocate and try to find a true well-versed specialist.

Tell me a little more about your group:

Teens And Young Adults With Endometriosis was a support group I started in 2014, originally for teenagers that have Endometriosis. As my members and I became older, I decided to open it up to young adults as well. Through my group, I hope to not only give support, but help provide these members with an early diagnosis, proper education, and treatment options.

What is something you wish every doctor understood?

I wish every doctor understood that it is extremely important to keep up to date on new medical information. Since so many do not do this, we are forced to be stuck with misinformation and misguided treatments or even unnecessary treatments that could be avoided.

Favorite quote:

“Let me tell you, if 180 million men worldwide had unbearable pain during sex, bowel movements and exercise, and were offered as treatment: feminizing hormones, surgical castration or pregnancy, it would be an international emergency to which we would transfer our combined defense budgets. We would not be having this misogynist conversation regarding enough money.”-Nancy Peterson

Three things you can’t live without:

Heating pad, boyfriend, and my Endo Warriors

What goals do you have for the future?

Currently, I’m taking my prerequisites for nursing school. I hope to graduate with my bachelors and possibly my masters in nursing. My dream job would be to work with an Endometriosis specialist or in pediatrics. After that, I hope to marry my boyfriend who has been with me through all my diagnosis’ and to have a few children.

What is the scariest moment you experienced during your health journey and what are the ways you manage mental health while dealing with medical issues?

The scariest moment was probably when I had a bladder installation for my IC (where they put medicine into your bladder with a catheter). They did the procedure incorrectly with the wrong sized catheter, made me bleed, spilled half the medication on me, and forgot to use lidocaine. I was supposed to expel it after a half hour but was unable to urinate for hours leaving the medicine in me to damage my bladder and cause a severe bladder spasm. I was unable to get back to my doctor so I had to catheterize myself with the wrong size catheter (too large) and the pharmacy also forgot to give me lidocaine. I was able to do it but was left in severe pain for about a month.

To manage my mental health, I regularly see a therapist and make sure to take breaks to do the things that I love even if I have to do them in bed. Support groups on social media are also helpful.