Jenna’s Story

We wanted to share Jenna’s inspirational story as part of the #MyEndoStory awareness campaign, which was started by @endoconnect and @endo_girl on Instagram. Jenna’s experience is also illustrative of how those with less well-known symptoms, such as back pain, can be particularly susceptible to misdiagnosis. 


Endometriosis Awareness

To all of the women who think they’re going crazy and no one will listen…..

To all of the women who thing they’re going crazy and no one will listen, you are not crazy, you’re just sick, in pain and exhausted. Some of you may know my story, for those who don’t, here it is.

About two months ago I was experiencing terrible back pain. I thought I just had a weak lower back and needed to strengthen and stretch more. Then the pain started moving up into my neck and down into my butt and hamstrings.

I decided to go see a chiropractor and as much as I felt it was helping, I was only getting worse. I started to then have lower pelvic pain. The pain was worsening everyday. I was extremely bloated on top of everything else. My mood changed, I was miserable, I was exhausted from dealing with the pain everyday. I even went to the emergency room a few weeks ago because the pain was just so bad.

The E.R. doctor said they did everything they could and found nothing wrong. So he then suggested a pelvic laparoscopy to rule out endometriosis. My mother had this procedure done before I was born because she was having troubles getting pregnant and was having terrible cycles. So I contacted my gynecologist and we scheduled a pelvic laparoscopy.

I had my surgery done in the morning and by that evening, all of the pain I was feeling was completely gone. I am now two weeks post surgery and I feel better than ever. I started to work out again (once I was cleared by my doctor one week post surgery). My mood is so much better, I have no lower back and pelvic pain.

This surgery was the best thing that ever happened to me, other than me meeting my boyfriend, Michael Evan. He was there for me every step of the way, didn’t matter how nasty I was towards him, he never left my side. He pushed me to keep going, to not throw in the towel. He and I were talking this morning and we said we wished we took pictures of my “endo belly” prior to surgery. When you have endometriosis, you’re bloated, you’re constipated, you’re totally uncomfortable. I didn’t take any pictures prior too because I didn’t know then at the time that it was in fact endometriosis and a cyst as well. I was ashamed to take pictures as well.

Now looking back, it’s crazy to think how much I’ve changed in two weeks. I found a picture similar to how I looked prior to surgery. This woman is showing how you can go from feeling normal to getting the “endo belly” in a matter of minutes.

jenna mazzela share your story myendostory

The top picture is not me but it is similar to how I looked, sometimes I was even worse than that. The bottom picture is the one I took today, two weeks post surgery.

So to all of the women out there that think you are going crazy, you are not. You know your body better than anyone else. Listen to yourself and DO NOT STOP FIGHTING! Fight for your health and your sanity. I say your sanity because endometriosis can cause depression and as well as psychological disorders. So please, please, please, do not give up on yourself. It will be worth it, I promise you. Love, Jenna Mazzella

#endometriosis #endometriosisawareness #worldwideendomarch

UC Berkeley Premed Students Learn about Endometriosis

UC Berkeley Premed student, Lizbeth Nunez, gives up her summer to take part in the Endometriosis Fellowship & Course

LIZBETH NUNEZ: 

“I decided to stay in school for the summer this year and wanted to be more productive than just taking summer courses. I began to look up internships and programs near the UC Berkeley campus, and fortunately, I came across an announcement from a club on campus called the American Medical Women’s Association, with the description of this program.

“Endometriosis”, I read. Hmmm. I was intrigued by the disease, as I was not familiar with it, and decided to look it up. I immediately was interested. The best part of the description was that there was both a fellowship and a course, which I found to be amazing since I would get to learn something new this summer, but also be able to see first hand how it is treated or handled surgically.

The courses not only gave us insight on how this disease came to be, or what factors to consider when trying to solve issues involving treatment and prevention, but it also provided us a first-person point of view of the disease with testimonies with women who were suffering from it. Seeing the pain and troubles it has caused others -and I speak for myself when I say this but am sure similar feelings resonated with my fellow peers- motivated me to try to gain the most knowledge on this topic in the short span of 8 weeks, and see how my involvement could help further EndoMarch’s mission.

As for the clinic and OR rotations, I am lost for words when I try to describe my experiences. Now, I have never shadowed a doctor, but I have volunteered at several hospitals before, and I have friends that have been given the chance to shadow doctors before, and I can say that the exposure I receive with this program is so much more than what is offered in other hospitals.

I commute from Berkeley, CA. to the surgery center located in San Jose, Ca. The commute is very long, and my mornings begin very early to assure that I get to the center on time, since surgeries start as early as 6:30 a.m. I remember waking up on my first day of rotation and wondering what I was getting myself into.

I was very excited and nervous (as most “first days” are). I arrived to the center and explained that I would be an observer for the day. I was escorted to a locker room where I was told to pick out my scrubs, which I was already in awe about, since my thought of an OR observer was pretty much what you see in movies: people in street clothes with tiny notebooks taking notes behind a big glass window that overlooks the operating room.

On the contrary, that is when I found out I would be INSIDE the OR WITH THE PATIENT just a few feet away from me, and that was why we had to wear the scrubs, scrub caps, and procedure face masks. I remember changing and walking into a room where my fellow peers were, who were also eagerly waiting. I tried to seem collected, but internally I was geeking out at the fact that I was in scrubs and was about to see my first live operation.

But with all of this excitement, there was also fear. I was terrified of the thought of seeing someone being operated in vivo. I had seen tons of operations on video, but I knew that was nothing close to the real deal. Fun fact: I also history of fainting with little triggers every time I get my blood drawn, or once when a nurse was taking my blood pressure, or like my most recent being at the optometrist’s office when they dilated my pupils, so I had been told various times that I would not be able to handle seeing, and eventually, performing a surgery.

This was the ultimate test. I remember walking into the OR taking deep breaths and trying to process what I was just about to see. I saw the patient lying there and could see her breathing. Soon after arriving, the operation began. The laparoscopy procedure began, and I stood there in awe. Once I saw the first incisions, I didn’t even think of the possibility of me fainting since I was too astounded at how amazing the human body is and at the precision of the talented surgeons at the center.

There was a big monitor in the room, that projects the video from the camera at the end of a laparoscopic tool. On this monitor, you can see the inside of the patient, including her pelvic cavity, the interior of the uterus, and I was even able to see the interior of the bladder at one point! It was magnificent. Waking up early was definitely worth it.

And the best part is that not only are the surgeons performing the procedure but they explain as they go, announcing important features or pointing out the endometriosis on the screen. This allows us to have an understanding of what the surgical goals and procedures are, but if we have any questions we are also able to ask nearby doctors, who enthusiastically answer our questions.

And, so far, I have been able to see 3 laparoscopies, a salpingectomy, cystectomies, an abdominal myomectomy, and far more procedures that I don’t remember the names off, but know will be soon etched in my memory. I can genuinely say that this has been one of the best opportunities I have ever come across, and the staff I have met are some of the most intelligent and caring people I’ve ever met, finding every possible opportunity to teach us and reminding us consistently that they are encouraging and supportive of us. ”

 

Endo Article from 1929

HARDLY ANY CHANGE IN 100 YEARS
If you didn’t notice the date of the endo article listed below from 1929, you could almost mistake it for one written last week instead of last century, nearly 100 years ago. If endo articles from 1929 (or earlier!) are barely distinguishable in their conclusions from those of today, what further proof do we need that endometriosis remains one of the greatest public health failings in the history of modern medicine.

TAKE ACTION TODAY
This is why we hope you’ll join us for ENDOMARCH 2019, to let policymakers know that we will no longer abide a status quo which continues to cause so much harm to millions of endometriosis sufferers the world over. Visit the link below to register for ENDOMARCH 2019, or visit http://www.endomarchnews.org, for other ways you can take action today.

ENDOMARCH 2019 REGISTRATION
Click here for Team USA Early Bird Registration

TEAM INTERNATIONAL
Outside of the U.S.? Click here to find an EndoMarch International event near you.

#Endometriosis #CalltoArms #EndoHealthCareReformsNow #EndoMarch2019 #ChronicIllness #InvisibleIllness #WomensHealthMatters #GirlsHealthMatters

FULL ARTICLE
Click here for the full article
ENDO FACTS 1929 article Endometrial cysts of the ovary Mazer et al

endo article 1929 endometrial cysts of the ovary Mazer et al AJOG PIIS0002937829904701