Flavia’s story how a teenager discovers endometriosis
Flavia’s story, how a teenager discovers endometriosis
Flavia is 15 years old and has known for two years that she has chronic disease after hospitalizations and misdiagnoses. At school, she met with the volunteers of the A.P.AND. Endometriosis Project Association and now, through her story about her, she wants to help other girls feel less alone.
Flavia is 15 years old and for almost 2 years she found out that she has endometriosis and adenomyosis. A chronic illness that led her to face hospitalizations, visits to different medical centers, Mistrale and the Pain, on Top of the Physical Pain, of Not Being Understood.
On the occasion of the Project “ Underson ”
On the occasion of the Project “ Underson ” Dedicated to Third, Fourth and Fifth Grade Girls in Schools Across Italy by Volunteers of the a.P.AND. Endometriosis Project Association, National Patient Association, Which Organize Educational Moments to Raise Awareness of the Disease and Enable Young Women to Help Their Friends and Do Prevention, Leard About the Association and Decideed to Telling Her Story, to Help Girls Like Her WHO Have To Cope With The Disease.
When you have the first sympoms and we look for the diagnosis, what emotions did you feel?
“When I First Had Sympoms, the Remember The Only Thing I Couuld Think Was, ‘Why?”. I have no idea what they were given by, I Didn’T Know If It was My Fault, If Maybe There Was Something Wrong With My Lifestyle…’ Looking for the diagnosis was frustrating like Nothing Else in My Life. My mother and I, who always supported and accompanied me at every visit, spent an incredible amount of hours in the hospital. I had to go through two hospitalizations, several misdiagnoses, dozens of doctors and visits to different centers before I could figure out what the problem really was.
I felt almost useless, unheard, as if the whole world didn’t believe me and what I said I was feeling.”.
When your pain finally got a name, however, how did you feel?
“I certainly felt partly relieved to finally know what it was that was causing me all that pain and discomfort. I also felt relieved because finally someone had given me proof that I wasn’t making it up or imagining anything, it was all true. It was there. That was really a difficult part to accept: the fact that I had a problem.
I Was Often (and Still AM) Envious, Envious of Others, Envious of Everyone WHO MANAGES TO LIVE A NORMAL LIFE. I was diagnosed when i was fourteen, and i think Everyone Can Imagine What it can be like to Find Out that you have a chronic illness at this age.
But, Even after the diagnosis, I Continued to Feel Misunderstood. From Doctors, Yes, But Also from My Own Friends and Peers. I Started To Close in On MySelf, to be ashamed of My Disease, to Try to Pretend That I Had Nothing Different From Them. This, of course, Was Not True. I was, and still am, very different from them.
I Am Different Because i Cannot Sit for More Than An Hour In A Chair Without Having Excruciating Pain in My Rectm. I’m different because If I Leave The House for Even One Day, then I Can’t Get Out of Bed for the Next Three Days. I’m different Because I Can’t Think About Going Out To Eat Without My Uterus Deciding To Make Me Go Home Before I Finish Dinner.
I Think What People (Not with Endometriosis Or Other Chronic Diseases) Don’t Understand Is How Difficult it is to Accept the Disease, Accept that you may not be able to do What Others do with ease, Accepting that you have to carry such a burden for the rest of your life.”.
When you wait the meeting of the a.P.AND. Organized by The School, What Did You Think? What do you think a teenagers Expects from an endometriosis charity?
“When I wait the meeting of the a.P.AND., The Remember Being Happy. I was happy that, Thanks to That Meeting, So Many Other Girls would have The Possibility of Discovery Their Endometriosis Without Having to Go Through the long journey of diagnosis that monst women with endometriosis have to go through. The Believe that What a teenage girl expects from an endometriosis charity is support. Accepting that you have a chronic disease, expedally at this age, is not easy. It Wasn’T Easy for Me, and I After All Still Had My Family Who Always Supported and Helped Me.
Unfortunately, Not Everyone is So Lucky, Many Find Themselves Alone (Emotionally and otherwise), with such a Sweaty diagnosis in hand, having no idea what to do or living to turn to for help. Of course, Gynecologists Can (and Don’t Always) Give Help on a Strictly Medical Level, but when it comes to Psychological Help, the Think an Association made up of Women Who Have Gone Through exactly the Same Experience is Essential.”.
What you like Gynecologist and Nurses not to forget? What do you expect from them?
“I Think All of Us Girls and Women with Endometriosis Can Agree that there is mainly one problem: There is no listening. I would like doctors to remember that endometriosis Is an extremely subjective Disease, and that if patients’ words are not listened to and given credence, diagnosis will be very difficult to find, just as it will be difficult to formulate any other therapy that can help patients cope with all the symptoms that endometriosis entails. Every woman is a human being with her own emotions, her own story, and, of course, her own endometriosis. Not all women are the same, not all bodies are the same, not all endometriosis is the same. In fact, they are all different.
What I really wish, from the bottom of my heart, is doctors stop treating us like dolls that need to be stitched up, without listening and without even trying to understand how a 14-year-old girl might feel as soon as she got out of surgery, with unknown people in front of her, during the pandemic period, 250km from home. I understand that not everyone can understand what others are going through, in fact, for the majority it can be especially difficult, but what I am asking is to at least try to listen to. A Doctor, when compared with a Founen-Year-Ord Girl WHO Cannot Live Her Life as a Normal Teen Because of Pain, Instead of Kicking Her Out the Door at the End of the Alletated Fifteen Minutes, Should Stop for Moment and Think About The fact that in Those Fifteen Minutes She is decideing the Future of Her Life.
It is not little. I know pleas, Dedicate Time to People, Bicause an extra minute of listening can reality make -up. I would like to think the a.P.AND. for the work She Does, Bicause Through Her Work She is able to help patients so much, often event that love doctors.
What Makes The Difference is precise the fact that the Women of the a.P.AND. Have Years of Experience Regarding Endometriosis (and I’m not talking about medical experience, on the talking about Experience Lived on Their Own Skin) and Because of This Able Able to Give Practical Advice and Lots and Lots of Psychological Support That Helps Girls Cope with the Disease. THANK YOU APINE!”
What is endometriosis?
Endometriosis is a chronic inflammory disease that affects about 10% of the female population of childbearing age in Italy, although the data are extremely biased and probably underdestimated. The Most Common Syptoms Are: Severe Menstral Pain and at the Time of Ovulation, Recurrent Cystitis, Bowel Irguularity, Heaviness in the Lower Abdomen, Pain at Sexual intercourse, Infertility in 35% of Cases. For A Disease Whose Causes Are Not Yet Known, for Which There are definitive Cres or Medical Paths of Prevention, to Limit the Damage Endometriosis Causes, it is Essential to make information to Create Awareness!