BP @ TEAM USA: 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?
@ TEAM GERMAN/- Tilia: Hello Team USA, dear Barbara, dedicated and affected persons, as well as all those interested. Thank you for your greetings, questions and your time! Since it is a very emotional issue for me, I will try to answer your questions as informative and hopefully as soft as possible. Beforehand I have to apologize, I am afraid my answers will be long – very long.´ I’m sorry!
Some facts about me: to protect my family and the rest of what’s left of my privacy, I surf the Internet with my pen-name Tilia. I also had negative experiences when it comes to stalking. Thank you for your appreciation!
I was born in Germany and I currently live in Leipzig. I am 40 years young and I love live, my family and especially my niece; she will turn 12 months this August! I also have several hobbies, e.g. my garden and needlework. I have a passion for crocheting. But at the moment, I spent most of my time raising awareness for endometriosis in our society.
Everyday anew it demands a great deal of me, how I came to be engaged in this concerns. Three years ago, I was diagnosed endometriosis upon a diagnostic laparoscopy. I almost had my uterus removed back then. Me and my former gynecologist were at our wit’s end. I was ruined, physically and psychically. Over the period of ten years, I discontinued contraceptives, which I had been taken for the past ten years. my menstruation was way too strong, I had miscarriages and eventually I did not manage to get pregnant any more. In addition to that, my health condition worsened. I developed a cellular immunodeficiency and an autoimmune disease. This involved several surgeries and less gentle treatments of conventional medicine over the course of three years.
This made me feel discouraged and exhausted. Me and my family were worried sick and asked ourselves how I would manage to go on. I had been vegetating for many years, seclusive and apathetic, I didn’t participate on other’s lives and wasn’t interested about my own life either. You can’t call that livability. In deference to nature and my family, I couldn’t go on like this. Something had to happen…
Eventually I made the decision to go to hospital and wanted to have an hysterectomy done despite my desire to have children! I was able to control my feelings in the preliminary talk until the doctor said: „Well, we are going to remove your uterus, after that you will be literally infertile!“ All my pain that I had bottled up the last ten years burst out that moment and I cried helplessly, not able to say just a single word. I stammered and stuttered. The doctor was shocked and she went to gather more colleagues in order to sort everything out from scratch. At a rate of knots, they found out, that I never received any sort of diagnosis. I had to get one as soon as possible. Shortly thereafter, I had the laparoscopy. Through the extracted tissue sample, I was finally diagnosed endometriosis. Few hours after the surgery, the doctor had already suspected this. This was in January, 2012. Just the next day I went back home. They told me to consult my gynecologist and show her my medical report. This was hard for me. After all I had been through, this was the last place I wanted to go. I went there and she apologized for not having considered this possibility. Anyway, there would not be too many women suffering from endometriosis. She told me that endometriosis was very rare, could be treated really well with contraceptives and anyway, I was completely healed since I had a laparoscopy done. There were so many contradictions! She didn’t want to answer my questions properly and she was not able to tell me what endometriosis is. I had read the medical report myself. It stated that I had to have a complete inner restoration, since they only extracted tissue samples. I had to go to a special endometriosis clinic! But she just gave me another contraceptive and said „Well, see you in half a year!“ I went home, aghast an confused, and took a look at my scars and stitches. She should have removed the stitches – which she hadn’t done obviously – so I went back to the hospital. You can tell that they were everything but happy to hear my story. They gave me the address of an endometriosis clinic, but they were not sure whether they were still working in this field of expertise.
I had enough fo it. I went home and researched on the Internet for myself! I typed in the word „endometriosis“ and googled it for the first time. The next days, I soaked it all in, every single information I could get, hoping to find anything useful. No chance! I only cried and was depressive because of what affected people had to go through. They just brought me closer to despair, even though I wanted to leave that behind! There are so few web pages providing specific knowledge and everybody says something else.
I realized: „Everybody thinks to know something but no one truly does!“
After that I went to the library. I noticed after having read three pages: I should have studied medicine… How long would it take to finally understand one book and my own illness?
Not until later I remembered our discussion and encounter groups and I started to google for endometriosis encounter groups. I was sure: they had to know what endometriosis is! I was unlucky. There was no such group in my city and we don’t have many after all all over Germany.
Summer passed and I decided to found my own endometriosis group in August 2012. In the meantime I visited three endometriosis clinics (all over the country, hours from my home, once I had to wait for 6 hours). I only made negative experiences and everybody told me something else. That didn’t help me either.
Eventually it was fall and I founded my own endometriosis encounter group in Leipzig, my hometown. I learned that other affected women were also interested in a group and this is why I founded another Group in Halle (Saale) and Augsburg.
And this is how I founded my endometriosis network which will hopefully grow further! Concurrently, I organize many endometriosis events throughout Germany the whole year. I also have many virtual platforms I supervise; affected people are to swap ideas there. We want to organize regional meeting there!
But let’s get back to the “EndoMarch”. Upon my researches, I eventually found out about the “EndoMarch”, formerly the MillionWomenMarch, on Facebook, in 2013. Back then it was nothing more than just a small group! I joined this group, contacted the admin and gathered more background information. And this was really hard for me, since I don’t speak English and Google Translate isn’t really a trustworthy source. By the way, this has not changed until today. Every then and now I engage a translator which entails costs. Or I just ask my sister; she has lived in London for several years and knows so much more about languages that I do! Everybody who tried Google translate knows what I am talking about. It gives you really strange results. It takes a lot of fantasy to understand it.
Whatever, I contacted the admin, but that’s it. Few days later, I suddenly received a message: Hey there, did you know, that you are Germany’s Country Captain and and and? I was like nooo? I just asked what this was all about?! I was longing for an answer eagerly and translated it. I learned about the extent and responsibility.
I was shocked and felt really bad. Worse from day to day. I wondered: what the hell did I write? How could this have happened? How should I handle this on my own? I am just affected, nothing more! What would be expected from me? Who do they think I am?
After a few days I calmed down and took responsibility! So this is what I knew: nothing more than a date: Thursday, March 13, 2014 I was on my own, was to raise awareness in all over Germany and participate in our worldwide endo campaign. Shout out „Here I am!“ I am your contact person. I am going to organize it my way. I really was on tenterhooks… I knew, that nobody was aware of the illness endometriosis or the “EndoMarch” since it was something completely new! And Germany is sick of demonstrations. We do not have the rights to go on the street. And it is a huge problem for affected people, since some are just feeling too bad to go out! We do not have any institutions in Germany that would avow for the rights of people suffering from endometriosis! Meaning I had lots of problems of which some are present until today…
In hindsight I think about it with a smile on my face. In Germany we would say „this pair of shoes“. I put this pair of shoes on with a smile on my face and I have come a long way wearing them! Not only for myself, but for worldwide 2 million people suffering for endometriosis. I want to raise awareness!
A last word to all doubters:
- Come on, nobody needs that.
- It is too expensive.
- It is just too far away.
- Well, my Granny hast birthday just that day.
- I do not have anybody who would look after my cat.
- Why not just have my own blog and tell people what I think about it?
- I do not like yellow, can I take another color?
I want to tell you something! If you are not willing to fight for yourself, then fight for following generations! Fight for all those that will suffer from endometriosis in the future! Fight for your children, your future daughter-in-law… It’s them to whom you will have to justify yourself: „Were you a part of it back then?“ When you had the chance to change something and raise awareness for endometriosis worldwide! Because those who organize the “EndoMarch” are affected people just like you and me!!!
BP @ TEAM USA: We are so incredibly grateful for all that you’ve done as a Country Captain 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 with your 2nd Annual EndoMarch! Are there any special highlights from these past two years that you’re especially proud of and would like to share?
@ TEAM GERMAN/- Tilia: Every time I see that some come from really far, just to attend, I am really stunned. in 2013 I thought that it should be a huge EndoMarch. In 2014 I wanted it to be hugest EndoMarch one has ever seen! There are enough affected people. That’s why I chose the first EndoMarch 2014 to be in Berlin! But it turned out to be worse than expected. Germans tend to talk and not to act! There are of course many people who assure to help me, but when it comes down to acting, they normally pull back. They pull back, because it means loads of additional work and renunciation; it is almost impossible to have a private life while organizing. In the end there were not half as many participants as expected. We were doing the best of it and spent a few nice hours together on a public plaza; in the end we all had our own little flashmob. Until today I think back with a smile on my face. I was feeling very bad that day, but this beautiful moment gave me the strength to keep my head held up high. I realized that this moment is worth fighting for and swallowing disappointments. We have to go on…
In 2014, I decided to organize the next EndoMarch in Leipzig, my hometown. Leipzig is also quite huge. In contrast to Berlin, I know many affected women who live her and have personal contacts. But even here everything turned out to be completely different… I had made contact with the administration of the gynecologist department in St. Elizabeth Hospital Leipzig; they were interested in what I was doing. They provided us their convention hall. Together, we developed a concept, invited endometriosis specialists. We asked them to make a lecture. The clinic even provided us with a buffet. We dealt with the public relations work together. Finally we had more applications. Even if only half of them really attended us in the end. Nevertheless, there were so many attendants, even from all over Germany. They had traveled such a long way just to listen to what we had to say! The next day I even organized a small city trip. Altogether, I did not only have a nice time but also a pleasant cooperation with the gynecologist department department in St. Elizabeth Hospital Leipzig.
But let’s get back to what I actually wanted to tell you! It is not about the size, but about making this worldwide campaign as low-threshold as possible In order to make it possible for others to be attendant. Not only in cities, but also in rural areas! Where nobody has ever heard about endometriosis.
- Where we need to rise awareness, e.g.:
- What is endometriosis?
- How can we handle this illness?
- What support can be provided via encounter groups?
- How can I contact others and be involved?
- How does a good doctor – patient conversation work?
- Who supports us when it comes to applying for rehabilitation or disabled person’s pass?
- We need to rise awareness for specialist doctors!
- Shelters for people suffering from endometriosis and exchange of experience and knowledge!
Even if it means, that there won’t be many attendants. It is worth it!
It is worth so much more than organizing it in a large city where nobody would come. Everybody would just pretend to join but cancel it last-minute Full of hope, I look at the Country Captains of other countries. Where there are so much more women speak up for our goals, e.g.:
- Professional competence
- early diagnosis and simplified testing methods
- Individual therapy concepts and aftercare
- unbureaucratic access to ambulant and stationary rehab methods
- Increased clarification in clinics, medical offices and in public
- Assistance of nationwide and comprehensive shelters for people suffering from endometriosis
- Assistance of therapies for ovulation synchronization treatment
- Assistance of ambulant therapies and better aftercare after surgeries
- Assistance for reintegration into work and profession
We need to declare our solidarity altogether! I admire you, every single person who is engaged or just attends our EndoMarch. I am proud to fight alongside you.
One day, people will say „endometriosis was underestimated this whole time,“ instead of „endometriosis is underestimated.“
But we still have a long way to go. The next goal is our third EndoMarch which will also be organized by me. I am already glad about every single person that will join us in the end! And I am glad about our endometriosis specialists who are going to hold a speech as well.
BP @ TEAM USA: 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?
@ TEAM GERMAN/- Tilia: Out of respect for our marvelous and unique endometriosis campaign. Because I believe in what we are doing. We need changes for affected people I have the deep desire that following generations will have early diagnoses. They should enjoy a better treatment than we are having right now! I value the acquaintances I was able to make with all of the Country Captains and team members, among them especially Barbara I admire all the voluntary commitment and hard work, I share the pain with every single fate, I went through all of this too and yet I love it. I have got a family that reinforces me in every decision I take. Without them, I would have starved to death or ended my life on several occasions. I would have missed out on all these beautiful moments! I am not only looking at all those colorful pictures from a distance, hell no! I know the person that is organizing all of this! I finally understand the abundance of diversity and I notice the growing interest in what we are doing. I can be a part of the greater whole. I live, laugh and cry for the campaign!
BP @ TEAM USA: 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?!
@ TEAM GERMAN/- Tilia: In 2015, another federal state seized on the idea of our campaign. For this reason, the EndoMarch took place in two out of sixteen federal states in Germany. Who knows, maybe there will be more states campaigning in 2016?
With each year full of experiences passing, I lose the fear of being put on the spot or not being able to organize it any more. I want to ensure the best contribution Germany has to offer!
Especially in the beginnings I was facing huge refusal and rejection which made it really hard for me.
They even expect me to be polite. I was tempted to say: „Who do you think you are? Have you ever done something for affected women?“ All those weary bloggers contributing their dangerous sciolism, claiming that their illness is „much worse than yours, than everyone’s!“ You have your own little web page, massage your ego and make profit of it. You are no institution, you do not crusade for women’s rights. You abuse your informative power to make a living!
I want to tell you something: You are the ones to show me, that I am on the right track, heading towards change. Despite your longstanding existence, there still are many women suffering from the devastating consequences of endometriosis! Tick tock, their time is running out…
Neither am I a full-time specialist nor an event manager or endometriosis specialist; I do not have support money and i do not have the strength to realize everything I want to on my own. I also am affected by endometriosis as you know and as I told you beforehand.
I am doing so much more than the others, so respect me for what I am doing and see the big picture!
The EndoMarch is a worldwide campaign that wants to raise awareness for endometriosis, adenomyosis, myomas and other related pelvic pain syndrome or disorders. So be a part of raising awareness for endometriosis, adenomyosis, myomas and other related pelvic pain syndrome or disorders!
BP @ TEAM USA: 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?
@ TEAM GERMAN/- Tilia: Oh yes, all of a sudden, my contacts cover the whole globe; virtually of course. For me, however, those contacts are no true friendships. I think it is unrealistic to transfer virtual friendships to real life. Yet, I value the networking and I enjoy the confidence you have placed in me. You have let me be a part of diverse snapshots of your life. I feel sympathetic to many of you; I can see things from your perspective and I know that nothing is self-evident, most of us had to work hard for what they have now. Despite your bitter fate, you still have motivating and loving words to spare for all of those, who gave less than you did. You can clearly see: „Persons who don’t own anything give everything away, those who own everything just hoard it!“
We are so much more than just a part of our community of fate, like being endosisters, endofighters or the rest of our silent society. We are cooperating with alive human beings – whether it is virtual or in person – and humanity! As I told you before, I kind of shut myself away for several years in real life. For this reason, it wasn’t easy for my to take the first step and approach others. I first developed this ability upon found my endometriosis encounter groups. This is where I carefully make friends, as well as on events. Bur basically, I have to learn how to share the same confidence you had put in me.
Several years of endometriosis and pain have changed every single somatic cell. My unfulfilled desire to have children was an unspeakable sorrow. By now I am years old and I fairly accept it. Nevertheless, can I expect others to accept me – as full of pains as I am? This is, why I prefer to keep my distance to anything and everybody.
BP @ TEAM USA: 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?
@ TEAM GERMAN/- Tilia: By now, the negotiations for the upcoming EndoMarch prove to be positive; I guess that the clinic will again join in. Anyway, should they back out last-minute, I still have my plan B thanks to previous experiences. I WILL set up something, somewhere…
We have to do the EndoMarch on March 19th instead of March 26th, though, since this date is during our Easter holidays.
In addition, I want to mention that the medical faculty is way higher encouraged that all the affected women. There are only few to confess to suffer from endometriosis in public and fight for raising awareness. That’s a substantial difference and this is why the efforts to throw light on our matters are one sided. Several organizations and the pharmaceutical industry just wants to make a fortune of medical treatments for endometriosis instead of enlightening us! The desires of people suffering from endometriosis fall by the wayside.
- What do they desire?
- What do they expect?
- Appreciation and the chance for self-help!
Now I have to manage the balancing act between an informative event and technically experienced speeches. First of all, the interest of affected people and the medical faculty has to be defined. Then common ground has to be found! Everything else has to be optimal as well: good infrastructure, maximum cost efficiency for everybody! In the end, this means that the EndoMarch can only take place in places where there are experts and volunteers.
BP @ TEAM USA: 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?
@ TEAM GERMAN/- Tilia: I only want to give you a few tips: Completely commit yourself to the EndoMarch. No matter what you do, everything is going to turn out well. The only thing that matters is that you act! Please contact and we will send you all the necessary information! With great pleasure, we – the whole team of the Country Campaign – will help you in word an deed! Please bare in mind, that an answer can take a while. We are offering none but informative assistance, it is up to you to act! Look at it like this: theorganisation of the programm of our campaigns is just as versatile like the diversity of our countries! We’ve got everything, beginning with a cozy coffee clatsch, ending with a professional information platform.
As I told you beforehand, it can be really hard to find volunteers. You cannot persuade others, they have to take action themselves. However, I can give you a piece of advice, helping makes you feel so much better. You just have to give it a try. There is no need to wait for years until you can benefit from all the positive experiences you will have made. Well, we will see what the next few years will bring!
Anyway, I do not have many business connections amongst journalists or politicians. I have contact to some though, and I can assure you that it took me a lot of effort to establish it!!! This is why my public relations work is limited to one or two sentences about date and place of the next EndoMarch in smaller newspapers. As you may also know, Germany has a policy „for the population“, not specifically for medical treatment of women. It is really hard to gain acceptance for me. I feel like Germany is too focused on the Euro rescue fund; we should focus more on our own concerns! If you get what I am talking about?
Our public work is to allocate small and colorful flyers, explaining what endometriosis is and providing information about our campaign. We are living in a fast-pace society, therefore we try to provide the information on the spot. It is easier to elucidate somebody face-to-face that by mail or under separate cover. This is why I also organize several smaller meetings, where I also introduce our campaign.
Least effective is to ask others for financial aid. I am consciously disassociating myself from any financial means or pharmaceutical aid in order to stay neutral and independent. The EndoMarch, however, is no cozy teamwork project. Otherwise we would have been able to claim benefits from our local health care system.
Everything is expensive nowadays. Talking about benefits and financial aid, meaning donations: our pleadings are only addressed to those who are already well informed about endometriosis. Since the EndoMarch hasn’t reached the intended level of awareness yet, it is hard to reach other people. In the end, this means that we do not have sufficient means. This has to be changed! I am waiting for the moment when I can say: „time has come to set up a benefit performance!“
BP @ TEAM USA: Any other highlights you’d like to share?
@ TEAM GERMAN/- Tilia: For additional information and impression on the EndoMarch please click here (…)
I want to raise your awareness for a positive attitude and the importance of self help.
Encounter groups are coalitions of like-minded persons on a regional basis. More precisely, I am talking about endometriosis encounter groups. Affected people are at eye level with each other. It is not only about how to be able to deal with endometriosis: Those groups form a community; members feel secure. Self help contributes to the fact that everybody out there can feel secure.
Our insight and knowledge should help every woman worldwide! And I can say that I, personally, feel safer now than I did before I started to attend several encounter groups. I found new possibilities how to receive emotional relief and where to talk to like-minded persons.
This is something you can benefit from too! Several encounter groups in your area are awaiting you. Be brave, you can accomplish whatever you strive for – better together than alone. The time has come to act!!!
BP @ TEAM USA: 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 GERMAN/- Tilia: You are doing great work and I am proud to fight at your side. I want to thank you from the depth of my heart, thank you for everything you have done for me and for everything you have gone through with me. Thank you for supporting me. And last but not least a special thanks to my family. Thank you!
I wish for a foundation of trust for every single on of us in order to have an uncomplicated life with endometriosis. I wish for a development towards happiness and health-related quality of life.
With best regards, Tilia
Tilia at firstname.lastname@example.org