Dina-Perla Portnaar
Small business owner at Dina-Perla Business, Coaching and Lodges. See platforms. dpmedia@mail.com or+31646327728 for more information

The heart, the home and the haven: A tale on endometriosis and infertility

A biological child — that was my biggest wish. I worked hard, persisted in the field of communications and media and spent as little money on myself as possible. I started out in life with nothing and wanted to pursue more important things, such as a home for my future family – the safe space I never had, since I grew up in a broken family and complex surroundings, in which I experienced physical and mental violence. However, another plan was in the making. Let me tell you my story.

When I was 12-years-old, the pain I experienced during my menstruation was so horrific, I begged my mother to call our doctor. He came to our house and I asked to speak with him alone. I told him my belly – as well as the rest of my body – endured regular kicks and smacks and that I was worried. Also, I explained what pain and fatigue I felt in the past months when I had my period. He asked my mother to enter the living room and said that I needed to go on the pill. However, my mother had many delusions, as well as ideas far off reality. The pill was equal to sex and prostitution, which had nothing to do with what was going on. I was not allowed to follow the doctor’s advice. As a minor, there was nothing I could do.

Never in life did I lose my internal compass, that led me to choose throughout the years until today. I prayed for a wonderful husband, a home – somewhere I belonged and could be just me – and an existence in general. It all came true. I held on to what I believed was right for me, even when I struggled to make it happen. I also prayed for an end to the chain of violence in this family. Every choice I made since then, has been a difference between day and night, compared to where I come from.

The obligation to do our part – to show up and do the work, to ask support when it comes to our calling; that is what it’s about. I understood, I am the heart of this bleeding and fighting household in which I never fitted in and felt imprisoned in darkness for most of the times. Did I only belong to the all-inclusive light in general? It was a long road, but someday that would all change.

The pain and fatigue stayed with me. I was used to suffering. 25th July 2007, my husband drove quickly through the stoplights. We went to the first aid. After a couple of quick tests and some strong meds that calmed down the pain for about seven minutes before exploding again, before I knew it, I was out on the operation table. They removed a cyst as large as an egg. The follow up was just one conversation on what had happened. Between 2007 and 2013, I wasn’t fit, had a lot of pain and was extremely tired, but I continued to build up our life. I also got antibiotics after a misdiagnosis. It wasn’t until my husband and I went back to the hospital in 2013, because we didn’t have children, that there was a complete turnaround.

September 2, 2013 changed me. During the operation, they removed endometriosis and I lost my tubes. It turned out that I had the fourth stage of endometriosis, which is the highest. I will never be able to express entirely how I felt when I woke up. It was as if a war zone in my body stopped. There was total calmness and no pain. Finally, I got recognition by knowing what I had. I went from the fourth stage to the first. This path of late diagnosis, unnecessary suffering, damage and consequences, is common for women with endometriosis.

Since then, I changed my being. I gave away 99% of my stuff because it didn’t suit the real me, was unnecessary, or symbolized negative experiences. I started to walk and even run for the first time in life, stopped using plastic in the kitchen, learned what healthy food is –especially in my case, made sure to rest enough and got into a very spiritual transformation. I lost a lot of emotional baggage, learned a lot from different teachers, forgave all, went back to my family and started to heal whatever was possible. I officially got recognized by my father as his child on paperwork and changed my maiden name into his. I talked to my two half-brothers and heard their stories. The stories behind mine and the ones of generation after generation.

Because I wanted a biological child, we went through the rollercoaster of IVF. An own child is the way to live on in this world. Moreover, I wanted to be the best mother in the world and do things differently. Besides, another half-brother from my father’s side and his mom got killed. We never met and spoke. The opportunity was taken away from us, so I wished even more for the child that would never come. Finally, as a third generation and Jewish woman, I so badly wanted to contribute after the loss of millions during World War Two and the persecution for hundreds of years.

For the first time since my youth, the loneliness came back. There weren’t enough prayers and tears for how I felt. Throughout most of the time that we tried IVF, we didn’t speak about it. The medication, thus hormones, impacted every area. In general, people have too little knowledge of what really goes on with IVF. Frustration when mistakes were made. I understood that it was out of our hands. The emptiness I felt was new to me. I mourned and searched for meaning.

It was then, that I understood I had to tell my story and talk about endometriosis, a chronic condition in which tissue comes outside of the uterus and effects health and well-being in many ways. Millions of women suffer in silence and isolation, at least one out of ten worldwide. It cannot be seen from the exterior. In fact, more women have endometriosis, since this group only represents the women that were properly diagnosed. It can also influence a couple’s life, for instance intimacy. Endometriosis affects work and career, sports, social life within the community, family life, expenses and much more. There’s a massive shortage of awareness.

Last year, I started to give interviews to the press and talked to many so called endo women, to hear their stories and carry their load – because we’re each other’s guards. I spoke on many subjects wherever I could and created tailor-made talks. Also, I brought a petition to the government and talked with a couple of politicians. I realized that the biggest present IVF gave me, was the fact that I did a test to see if mental diseases were passed on to me, but thank G’d, I am healthy. I realized how thankful I should be, because some endo women have conditions much worse than I do. I feel their pain and pray for them every day. On a spiritual level: with Eve, our cycle started. Endo women may represent the burden of our ancient world, the desire to return to the state of the Garden of Eden – peace – and finalize all our stories. The skies unanimously bled for a long time. The rain washed our grief and prepared us for the time to shine.

Then, I had the most profound realization of my life! As a child, my wish always was that I would do the opposite from where I come from. That will happen now, because if having a child, nature will be out of the question, just nurture will remain. Who knows what would have been transmitted. All my prayers were answered…

Now, there’s too little awareness and knowledge. It starts with educating our young girls and mothers, by explaining what the symptoms are. If I would have gone on the pill as a teenager, I still would have had endometriosis, but probably not get so damaged by it in the body, leading to infertility. Also, the conditions I lived in created a sort of accelerated domino-effect. Today, I feel it is my responsibility to protect the future mothers and carriers of our nation. It might be necessary to change the halacha, thus the Jewish law. Since I am a writer and speaker by nature, this is how I am doing it. My voice is my strongest asset and it literally saved my life. Who knows what it could do for others. I offer my heart.

In the meantime, Jewish ladies approached me. One shared that only her mother knows she has endometriosis. She felt she couldn’t talk about this subject, because as always with taboos, it would make her feel uncomfortable and ashamed. She was scared to lose respect, to be misjudged or misunderstood. Finally, she was able to talk to someone who comprehends – from real experiences. I do not have to explain the amount of sorrow these sort of situations cause. Let’s be transparent and open our hearts like never before. Dearest people, we are one, especially within families. The loss of three pillars cannot be justified, namely the heart, the home and the haven. Looking closely, are all one. That is what I could define as gracefulness.

I would love to travel around the world, help communities flourish and talk about endometriosis, IVF, customized care, food, chemicals, lifestyle, living arts, bereavement, loss, domestic violence, honor, spirituality – also Jewish philosophy and Kabbala, the feminine body, empowerment, entrepreneurial spirit, work and marriage. Also what it means to be the third generation.

Where I stand? Working on the final chapter of a book on living gracefully. My husband and I might be looking into finding a Jewish donor mother and carrier at the same time. This may bring us to a crowdfunding activity. Nothing can be evoked from above, if not being acted upon from below. We keep our hearts open, we pray and mostly, we do our part.

Happy Women’s Day!

About the Author
Small business owner Dina-Perla Business, Coaching & Lodges. See platforms. +31646327728. No blabla. http://dinaperlacoaching.com http://dinaperlabusiness.com http://dinaperlalodges.com
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