Endometriosis Advocate from Germany’s Schweinfurt Chapter Taking Action

endomarch 2015 germany katja on stage awesome pic

Katja Uttinger is an amazing advocate, Endo Sister, and EndoMarch Precinct Manager for the Schweinfurt Chapter in Germany. Here are excerpts from her recent interview with us!

ENDOMARCH STAFF: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?

KU @ TEAM GERMANY-SCHWEINFURT BRANCH: My name is Katja Uttinger, I am 48 years old and the Precinct Manager of Germany/Bavaria. I was born and raised in Germany. I used to work as a paramedic and medical assistance till 2008. Endometriosis did cost me 4 jobs, since I got fired every time I needed an operation. Then I started working [in] automobile industries, working shifts in productions, where I still work. So far I have had 13 operations and hoping I will not have another one. I do have a beautiful, smart 23-year-old daughter; she is the light of my live! Couldn’t have done it without her! I did have problems with my period since the beginning of my womanhood…about age 13! Never did I think, I did have a disease, nor did my surrounding or family or doctors. I did see my first gynecologist at age 15 because of heavy periods. He would prescribe BC (not even having intercourse yet) to help with the heavy bleeding, which seemed to work for years. After becoming an adult, I would find myself in his office over and over again, because of painful sex. I do not want to write about all the answers he gave me. They were disturbing and cruel. I ended up, thinking I am just not NORMAL! I started looking for answers online, as soon as I got diagnosed with Endometriosis – only to find out, there weren’t any answers! Not in Germany. I did get diagnosed in 2000 during an appendectomy. The surgeon told me I had endo, but it is nothing to worry about, [to] see a gynecologist and you will be okay. Which I wasn’t! From there on, I decided to become a voice for women in Germany, but couldn’t find partners to work with, until I became a member of the Endometriosis Foundation of Germany. In 2013 I read about the EndoMarch and decided to participate in it.

ENDOMARCH STAFF: We are so incredibly grateful for all that you’ve done as a Country Partner for Team Germany for two years in a row! Not only were you part of the team that made history during the inaugural events in 2014, you’ve also been able to achieve even more this year! Are there any special highlights from these past two years that you’re especially proud of and would like to share?

KU: I am very proud of all my Endo-Sisters who supported me! Also one of the highlights was, my “coming out” in the newspaper. I felt released and happy, that everybody knows now, what is “wrong” with me. And all the phone calls from women, or mails, asking about endometriosis, helping out in finding experts to help them! Also EndoMarch 2015 in Schweinfurt was so awesome, I think we had the best speaker – Prof. Dr. Renner from Erlangen – he taught us a lot of things I didn’t know!

ENDOMARCH STAFF: We were so inspired by you when we learned that you were going to stay on board for another year, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?

KU: What really keeps me going is actually right now, the experience I keep having with the local doctors! Being invited to a professional event with guest speakers experts and not attending is driving me insane..lol…I want to get the Ob/Gyns in my area to pay attention to Endometriosis and the women suffering from it! Get to know the symptoms, the treatments and to send them over to specialist to take care of us! We are coming to them to seek help, not pity! We are not sure yet, where we will hold our next event. Could be in Würzburg, where there are a lot of medical universities plus med students, or in Schweinfurt again, maybe even in both towns! Plans are on the way…

ENDOMARCH STAFF: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!

KU: Best outcome was actually the recognition of endometriosis in my town and people asking for advice about it: My next door neighbor would finally get operated and diagnosed with endo after years of pain. Girls asking about it; this makes me really proud and gives me the feeling of achieving something. I am also very happy about meeting the right people at the City Hall in Schweinfurt; without them, this could have never been as successful as it turned out. Plus meeting all my awesome endosisters in person for the first time; we developed a great friendship!

ENDOMARCH STAFF: A lot of Country Captains told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?

KU: Yes definitely; I met so many Endosisters around the world via Facebook and have a lot of support from them! I love them all and some of us are planning to meet one day, just like my best Endosister Eylin Perez from Peru! She is my little sister and I love her dearly.

ENDOMARCH STAFF: Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?

KU: Well, as I mentioned earlier, I was very lucky to get my specialist Prof. Dr. Renner from Erlangen to speak at my event. He is just awesome and works hard on recognition of endometriosis in Germany. Also my other gynecologist, Dr. Gericke, who did my treatment with Chinese medicine, which has been very helpful with pain! I am still so glad they joined us and did spent their Saturday afternoon for free to support this cause! Not sure yet which doctors we will find for next year, but I have a few in mind! Maybe even Prof. Dr. Renner, but I haven’t asked him yet.

ENDOMARCH STAFF: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?

KU: I did get to meet Diana Fuchs from our local newspaper which was one of my best moments this year! She was very interested and wrote a great article about me; haven’t had the time to do more due to my full-time job. I have talked to on elected government official, but didn’t get any answers yet; still working on that one. I would think that going public with my own personal story was the best I could do and effective. The least effective is to ask for help and having to ask over and over again, even just friends who just don’t want to commit. Don’t waste time asking [again] if their answer isn’t yes the first time! Find somebody else. A big help is also using social media like Facebook. I do not use Twitter or anything else, but Facebook really did a great job finding volunteers!

ENDOMARCH STAFF: Any other highlights you’d like to share?

KU: The amazing donations I got during my planning for printing flyers for example. Even my daughter gave me a cup for endo support filled with money for Christmas. She has been a big supporter! Also my best friend, and oh my God all the Endosisters attending; I was overwhelmed with all the gifts and flowers they brought! Amazing moment, they donated so much, because they want to do this again. 

ENDOMARCH STAFF: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.

TEAM GERMANY – SCHWEINFURT CHAPTER
If you would like more information about the Team Germany – Schweinfurt chapter, please do feel free to contact Katja or her teammates here:

Contact Katja at kuttinger@web.de
http://endokat.blogspot.com/2014/08/trotz-diagnose-immer-noch-krank-schon.html
https://www.facebook.com/groups/EndomarchSchweinfurt/

SPECIAL POST FROM DR. CAMRAN NEZHAT

Dear EndoMarch Supporters, Volunteers, Chapter Presidents, Precinct Managers, Ambassadors, and Country Captains:

UPDATES AND LOOK BACK ON ENDOMARCH GOALS
Thank you all for your continued interest and support of the Worldwide EndoMarch. We would like to share some good news with everyone. Since first announcing the Worldwide EndoMarch in 2013, we set several goals to accomplish in the next ten years, including:

1) Worldwide Awareness of Endometriosis:
We hope endometriosis becomes as recognized by the general population as is diabetes and hypertension, which will help reduce diagnostics delays.

2) Endometriosis Education in Public Schools and Universities

3) Discovery of a non-invasive test to diagnose endometriosis

4) Research into potential preventive measures

5) Collaboration with medical schools and societies to bring advanced training to the forefront of their curriculums

6) And finally, discovery of a cure for endometriosis

OVERVIEW
We are on our way toward making impressive changes regarding endometriosis awareness, as is evident by the recent uptick in media attention. Endometriosis affects young girls and women of all ethnicities and we are starting to hear more about the global impact of this disease. As such, we’ll continue expanding globally so that there can be chapters around the world, led by passionate advocates who are dedicated to making a difference. Toward this end, we now have on board EndoMarch representatives from China, the most populous country in the world, who have held three EndoMarch events and educational symposiums this year alone, and are in the process of planning their forth one for the 2015 year. Cyprus has also just recently joined the EndoMarch, and in the U.S.A., a steady stream of individuals, medical professionals, schools, universities, and organizations join the cause daily, so that we can all work together to bring the needed attention to this perplexing disease that has devastated so many people’s lives.

As we have been saying for years, endometriosis is a disease of adolescence. As such, endometriosis education in schools & universities also remains one of our highest priorities. Toward this end, we have worked hard to recruit & train nationwide and international teams of Education Ambassadors & Community Partners, who are now establishing education programs in schools and universities across the U.S. and throughout the world, using curriculum created by our team of endometriosis experts.

Concerning collaboration with medical schools and societies, we are very excited to announce that the Society of Laparoendoscopic Surgeons (SLS), the largest, multi-disciplinary minimally invasive surgery society in the world, has for the first time ever, established a fellowship program specifically for endometriosis, to train the future generation of specialists. (Since endometriosis affects so many different organs and tissues of the body, the multi-disciplinary nature of this fellowship will really begin to make a difference). You can click on the following link to learn more:

http://www.generalsurgerynews.com/ViewArticle.aspx?ses=ogst&d=Video+Arcade&d_id=494&i=September+2015&i_id=1228&a_id=33658.

Concerning progress on finding a non-invasive test, we share again with you the recent NIH report on groundbreaking achievements in this area:

http://www.nih.gov/news/health/nov2014/nichd-25.htm.

THANK YOU AGAIN
Thank you again for your passion and dedication to improving the lives of millions of women and young girls around the world. With your continued support and involvement, we know we’ll truly be able to make a difference.

Forward We Go,

Camran Nezhat, MD, FACOG, FACS
Farr Nezhat MD, FACOG, FACS
Ceana Nezhat, MD, FACOG, FACS
Azzi Nezhat, MD, FACOG
Founders and Supporters of Worldwide EndoMarch