When and how did you realize that it was difficult for you to get pregnant?
That’s a long story. Years ago, when I was very young, about 12 or 13 years old, I started taking the pill. Unfortunately, I didn’t react well to it at all: I gained about 12 kilos and then stopped taking it immediately. When I stopped taking the pill, I lost all the weight again, but it was clear that the pill was not for me. Then I tried the Nuvaring as a contraceptive, since the hormones are supposed to work much more locally with the ring. I also had severe side effects: I got bad migraine attacks and water retention.
When I went to the US, the cost of the Nuvaring was so high that I went back to taking the pill. As expected, my body reacted very badly again. So I decided to stop using hormonal contraception once and for all and got the copper IUD. After 3.5 years I had it removed and then quickly noticed that my periods only lasted a very short time. That’s when I thought there might be a problem with my reproductive health so I visited my gynecologist to discuss this.
How did the gynecologist visit go, and what happened after that?
At the gynecologist I had blood drawn at the beginning of my cycle to check whether I was ovulating. The results showed that everything was fine. But I couldn’t really believe that. I hardly ever had my period, if I got my period at all it lasted for a maximum of two days. Instead of a regular period, I had constant spotting. My gynecologist referred me for a test of my fallopian tubes, which also came up without a diagnosis and left me wondering why it just wasn’t working for me. The last thing I did was an at-home test with a saliva sample. This didn’t help me much either. With these results in mind and having conducted further research on my own, I came to the conclusion that I might be affected by a luteal deficiency and therefore took maca root in the second half of my cycle (which was also recommended in the saliva test).
Of course, wanting children is not just a woman’s thing, so my boyfriend has also gotten a semen analysis. And actually, something did show up in the test. So we already know that ICSI (intracytoplasmic sperm injection) will probably be the only option for us.
How did you feel at the time?
From the very start, I didn’t feel that my gynecologist took me seriously. I actually changed doctors. When I brought up that I felt something was wrong with me, it was just dismissed. I also didn’t feel like I was getting a holistic examination. Only the most obvious thing was done, a blood test, but I wasn’t even told what was being measured.
I felt really frustrated and helpless.
I didn’t know where to go with my concerns and found it to be insanely difficult to find a gynecologist who really takes a holistic and in-depth approach. You don’t know the details, you just read hundreds of things on the internet. In addition, you have to pay for everything so that you can get to the next step with your family planning. It’s really easy to lose interest in this whole process. Even if I were to go to a fertility clinic because of my partner’s findings, I still don’t know if this would be the right treatment for me because I haven’t been diagnosed. We were almost grateful for my partner’s diagnosis because it takes away some of the uncertainty and we now know that we can continue in this direction.
But I still don’t have a diagnosis or at least the certainty that I have been examined holistically. The results of the blood test at the gynecologist were only given to me briefly by phone stating that all values were okay. But as far as I know, only the standard hormones like progesterone and estrogen were tested.
One of the reasons I’m testing my fertility with LEVY is to understand the root cause of my trouble conceiving and learn in-depth about my reproductive health.
Can you tell us more about your partner’s semen analysis results?
My boyfriend went to an andrologist, where he had two semen analyses performed at different times. We thought that the second one had a better result than the first one because the doctor said it looked better, BUT some things were not okay. We were a bit disappointed because we were optimistic at first, but then we got the results. In the end, it only confirmed the first semen analysis. It was a shock for me at that moment, because in the end, it’s the woman who gets treated and not the man. But still, it was very important for me to have this certainty.
The worst thing is this uncertainty.
How do you deal with the topic of trying to have a baby? Do you talk about this openly with your friends and family? Or do you keep it between you and your partner?
I am relatively very open about it. In retrospect, I sometimes think I started talking about wanting to have a baby too early. I have no problem talking about it in front of my friends, but I also assumed in the beginning that I was the problem.
Now there are also other issues. We would have to get married in order to get financial support from health insurance companies for infertility treatment, which is another big problem.
In addition, there are family circumstances in my case. I have a mentally handicapped sister. That’s why the thought that I am now 30 years old, and the probability that my child will then also have a disability is only increasing, weighs heavily on me. That’s why I don’t want to wait until the state decides that unmarried couples should also receive support, but want to take action immediately.
When did you reach the point where you said: I have to do something and take charge of my fertility journey?
After half a year I already thought that something was wrong. From the start, I was watching my cycle and taking my temperature. In addition, I was also having spotting and so I quickly started to think that something may be off. Six months of this and I wanted to do something about it, but it’s really dragged on. The whole process takes a long time: you have to wait for an appointment with the gynecologist, then for the blood draw and then for the results.
It takes a long time to get answers, and you don’t feel well supported along the way.
You mostly search the Internet for information, but one website says one thing while another says something completely different. This is very unsettling. Unfortunately, I don’t have the feeling that I’m in good hands with my gynecologist and that I can ask him anything. I don’t have the feeling that he is there to help me. It’s unfortunately always up to me to call the doctor’s office to get my results – they don’t reach out to me. So I’m just in this constant state of limbo. It’s super important to have a good gynecologist, but that’s also really difficult to find.
What would you like to see change in our healthcare system when it comes to helping people with fertility?
Above all, accessibility to one truth and not several. I would like to be able to recognize the right symptoms more quickly and I would also like help to be more easily accessible. Everyone should have the choice to be examined by experts in case they suspect something may be wrong. I would like to be taken seriously and not just get the feeling that I’m a number in the system. And I want to exchange information with other women who have gone through similar experiences. Struggling with fertility and having miscarriages are still totally stigmatized. There’s not really a place for real exchange on these topics.
Do you have any helpful tips you’d like to share? Or maybe examples of what other people have done that has worked for you?
I think it’s very important to be open and ask questions. But you shouldn’t judge in the process. And what I was told by my friend who had her child through artificial insemination was: “Don’t wait! Don’t follow the normal rules of when to get your fertility checked. Try to get everything checked out quickly.” That was very valuable to me because when you realize for yourself that something is wrong, you don’t have to spend a year trying around and keep getting disappointed. I really find this statement, “Try it first, you haven’t been trying for a year yet,” totally absurd. Therefore, I would also pass on this advice.
In general, having a friend to talk to who has been through the same experience was and continues to be super helpful for me. It’s common to have problems getting pregnant.
What doesn’t help at all are comments like “you shouldn’t work so much”. Yes, I have a stressful job and I’m also a bit career-driven, but I don’t like to see that as the cause of our fertility struggle.
You have said for men it’s a whole different story when they find out that they have reduced fertility. Why do you think that?
I think it’s because of society. We’ve talked about it and we don’t know any men around us who have a problem with their fertility. That means my partner doesn’t have access to anyone who is in a similar situation. All of his friends have children, so that makes it even more difficult for him. He keeps stressing about if he’s a normal guy. He has no diseases, is always healthy and that is now his only ‘flaw’. I think that does a lot to a man who thinks about masculinity in a certain way. Therefore, it’s actually worse for him than it is for me. Women are in this respect perhaps still stronger than men.
Thank you Leonie* for your openness and for sharing your story!
*name changed to respect her privacy