Experiences with Social Freezing
Sonja became part of our Fertilly team shortly after its foundation. As a german patient advisor she advises on the topics of assisted reproduction, insemination and social freezing. She was diagnosed with endometriosis at the age of twenty-one. She incorporates her own experience with the diagnosis and with social freezing into her work on a daily basis.
Experiences with Social Freezing: Interview with Sonja
When did you start to deal with your fertility?
“I always had a desire to have children from a very young age, my fertility especially became a topic for me with my first menstrual bleeding.
When I was 21, I was diagnosed with endometriosis and had to undergo emergency surgery. Since that point, the conversation of “fertility” became relevant to me at the latest. Since then, social freezing has always been a thought that came up in my mind, but I pushed it aside time and time again. During this time, fear has always played a huge part into how my fertility is doing.”
For what reason did you ultimately decide on social freezing?
“Due to endometriosis, I was at risk of infertility if my cycles continued to occur naturally. Therefore, my only treatment option was to take the birth control pill continuously. This worked well for a while.
After I started at Fertilly, social freezing became a daily part of my work. I was afraid to stop taking my birth control pill, but I also thought it would be the perfect way to approach social freezing now in my late 20s to have a realistic chance of success and to take some of the worry of childlessness away.”
What was the process like?
“In the beginning, it was a never-ending back and forth. I vacillated between panicking about going off the birth control pill and deciding to try it without. In the end, I stopped taking it and also attended the first consultation at a fertility clinic relatively soon. However, this was very frustrating. I was told that it was almost impossible to perform social freezing because not a single egg was visible on the ultrasound. At that time, I was approaching menopause and would have to tackle my desire to have children now, if at all. However, this did not fit into my life plan at this point. I always had a classic image of having children in my head and also wanted my life circumstances to fit, but they didn’t.”
“I COULD UNDERSTAND FOR THE FIRST TIME HOW WOMEN MUST FEEL WHO HAVE A DESIRE TO HAVE CHILDREN — BUT IT JUST DOESN’T WORK OUT.”
“I walked out crying. I was able to understand for the first time how women must feel who have a desire to have children and it doesn’t work out. Or who feel ‘if I had done this sooner, then maybe.’
However, during the initial consultation, a blood sample was taken and a few days later I found out that the anti-Müllerian hormone value, which provides information about the egg reserve, was disproportionately high in relation to the ultrasound image, i.e. good news. I was then told that I was welcome to try social freezing, but they could not tell me what my chances of success would ultimately be. Nevertheless, I thought I wanted to try it in any case.
Then in June 2021, I started my first and only run. That’s when I quickly noticed a tug, but at first I judged it to be placebo. The first control ultrasound appointment was very positive: one could already see a lot of small follicles. I was prepared for this to become very noticeable by the end of the week.
Originally, hormone stimulation was scheduled for ten days before the puncture, i.e. the removal of the eggs. Towards the weekend I started to feel very bad, which is absolutely not the norm, I must say. At the second appointment for a control ultrasound, it was discovered that the follicles were not so big after all, so the puncture date was postponed. This was very stressful for me, even though it already looked very promising at that point.
On the day of the egg retrieval, I was extremely excited. I didn’t notice anything about the puncture itself. When I woke up, I was already under painkillers.
Then I got the positive news that some fertile eggs could be retrieved. That made me absolutely happy.”
How did you feel after the procedure?
“IT WAS A SIGH OF RELIEF, THE FIRST TIME IN YEARS.”
“I adjusted to feeling the hormone stimulation significantly. I had some physical discomfort but mentally I felt normal. Only when the hormones were stopped did I have a small drop, that eventually ended.
When I was able to finish the whole subject, it felt totally unrealistic at first, especially because I didn’t approach the treatment with too many hopes. At the same time, it was a huge relief. It was like breathing a sigh of relief, the first time in years. I can make the decision to have children regardless of external factors that I can’t influence.”
How openly did you deal with the topic in your circle of family and friends?
“Among my friends, I have been completely open about the treatment. I think it is incredibly important that there is more transparency on this subject. Since my friends knew my history of suffering, they were incredibly happy for me.
I told some of my family members about it. Most of my family knew, but they questioned everything because they took it for granted that young women could have children. But no one tried to stop me.”
How do you perceive the topic of social freezing in our society?
“I notice with our patients that many are already in their mid or late thirties, which is quite late for social freezing. I also understand that the topic is a money issue, as it is not cheap. Otherwise, the topic is far too little discussed in society. I traveled a lot in the US, and there the topic is already much more normalized and it’s dealt with openly.”
How does your personal experience help you when talking to patients?
“My treatment was also a turning point for my work. Of course, I could already understand my patients very well beforehand and put myself in their shoes. But now I can understand them even better.
I talk to my patients about my own experience when I feel it fits or when I am asked about it. Then I gladly talk about it openly as well. I can imagine that it builds a lot of confidence to talk to someone who has walked the path herself.”
What would you want to advise a woman who has made the decision to go for social freezing?
“IT SHOULD BE PART OF EVERY ADOLESCENT WOMAN’S LIFE TO HAVE HER OWN FERTILITY TESTED”.
“Definitely to perceive an initial consultation in a fertility clinic to have the state of her fertility tested. The vast majority of women have their fertility tested for the first time when they have been trying to get pregnant for a long time. Often, however, there is not much help available at that point.
You can only make a decision for or against social freezing if you are informed about it and know about your own fertility. However, most women do not know this. The reality is that even women in their twenties are already going through menopause — rarely, but it happens.
I would like it to be part of every adolescent woman’s life to have her own fertility checked. Only then will young women have the chance to make a decision for themselves instead of having it automatically taken away. I understand that the money factor is a huge issue for many. But it is an investment in the future. In their own future and in a self-determined future.”
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