Susanne and Nils
Now we sit here, with two small wonders, even though a doctor 12 years ago said that I, Susanne, would never be able to have my own genetic children.
I've always had a feeling that it would be a problem for me to have my own genetic children. In 2001, I contacted the health care service to see that everything was ok since I had no ovulation. Samples were taken and despite many conflicting test answers, I was told that the day I wanted to become pregnant, I would take medicine that would give me ovulation and then I could get pregnant.
In 2008, me and my ex-husband began our efforts to get Elliott, who is now 9 years old. I had to take medicine following the doctor's recommendation in 2001 but nothing happened. My body did not respond to the medication and the ovulation failed. I was re-examined and it showed that I had low levels of oestrogen, FSH, LH, prolactin and AMH, the doctors did not know what to say. Nothing was right, low FSH and LH were never going up. “It seems that something is wrong in your brain, that the hormones are not sent out.” My case would be consulted with doctors at a medical congress in Barcelona; they wanted to check if I really had ovaries and so on. The verdict I got was: “You will probably never have your own genetic children – from your own eggs.” My world collapsed, 28 years old and to get that message, it was tough.
In spite of all this, no further investigation was done, but we chose to test an IVF trial privately, since the public health care did not want to offer it to us, because of my bad values. I was stimulated with Menopur 375 each day. Out of this we got 4 follicles, we managed to get 2 eggs out, with one egg that passed the fertilization and is now my 9-year-old son Elliott. In the last sentence of my medical record, I read: “This patient proves that we cannot rely solely on a low AMH value as an indicator of the possibility of becoming pregnant.”
Three years later, we wanted to try IVF to get siblings for Elliott. We made 3 attempts privately. This time they increased the dose of Menopur to 425. Each time we got 6-7 follicles and 3-4 eggs which were all fertilized; 2 embryos were always okay enough to put in, but none could grow enough to blastocyst or freeze. These three attempts all resulted in 2 weak pluses on the pregnancy test, but about a week later the uterus was empty, every time. They never lasted longer than 2 weeks.
I reconciled myself with the idea that Elliott was a "once in a lifetime" event for me and of course I felt incredibly fortunate to have him.
In 2014, I decided to get to the bottom of my divergent test responses and wrote a self-report to the endocrinologist at Sahlgrenska in Gothenburg. I was taken in for an investigation and after an X-ray of the brain it turned out that I have Empty Sella syndrome. This means that the pituitary gland that secretes FSH and LHs hormones which stimulate eggs and ovulation, etc., was greatly reduced and therefore could not send out all the hormones needed to grow mature eggs. Many years of question marks finally got an answer.
In 2015, Nils and I met. Even before we took our relationship further, I told him we could never have genetic children. Nils said he was okay with that, I wasn’t.
I was not "done". I felt and experienced that I did not give my body the chance to become pregnant with the new medication and the knowledge of my illness; what if we could do something different now that we knew what was wrong? Something different that makes it work to get pregnant?
We made 3 attempts via public health services. Menopur 425. Same outcome as the last in number of eggs and quality, 2 embryos were inserted each time with a slight plus-sign, which then disappeared. Somewhere within me, however, I felt that they weren’t doing everything they could. I asked the doctor on several occasions to look at me as an individual and my condition, but they just said that there is nothing they can do differently and referred us to egg donation.
At this point, I refused to accept their response. Personally, I do not think that the outcome of something will be different if you do the procedure exactly the same way as before; you have to try something new, twist, turn. Nils and I talked to each other and decided that we would give it 3 more tries, but we will reach out to those who know fertility treatment best. We contacted Denmark, Poland, Barcelona and others and asked what they could do differently compared to Sweden, “nothing different” they replied, “just wait for the golden egg.”
In the autumn of 2018, a friend of mine sent me the advert for Olga's seminar in Gothenburg. We were sceptical, Russia, so far away and preconceived opinions gnawed. We went to the seminar anyway and were very pleasantly surprised by Olga's competence and great will to make us understand the medical part behind infertility. After our private meeting with Olga, we had decided. Already in this early stage, she came with several suggestions on what we could do differently, based on mine and Nils’ medical conditions. Among other things, she suggested a smaller dose of egg stimulant (Menopur) and that I would not take Orgalutran (prevents ovulation by suppressing LH) as I already didn’t have the LH hormone and in addition, Orgalutran slows down egg growth by up to 30%. We were now going to Saint Petersburg!
We were given the opportunity to choose the guarantee package. We reasoned that if we chose it, Olga would really do EVERYTHING for us to succeed on the first try. As mentioned, we were given Gonal F plus Menopur, but a much lower dose than in Sweden (300IU daily in total) and no Orgalutran until much later in the cycle when the eggs had already grown. The contact with the clinic in Saint Petersburg, the doctor in Sweden with whom we did ultrasounds, everything has been professional and in every way beyond expectations!
8 eggs were removed, 4 became embryos, all managed to grow into blastocysts and all 4 were frozen! We were in shock, so far everything was too good to be true. We had never received such a good response or result in Sweden. 2 of the blastocysts were top quality, 2 of the blastocysts were okay quality. After much weighing back and forth, two top quality blastocysts were put back in after a hysteroscopy. There was very little chance that both of them would attach, due to my history, as well as my age, and so they dared to insert both. 10 days after the transfer the plus came! However, we were worried that it would not last, with regard to our many weak pluses previously, however, this was very strong. The HCG value taken on day 10 after transfer, was very high, 624 and the ref value was 17-429. Now we were starting to wonder if maybe both of them had made it. The ultrasound showed two embryo sacks but only one heartbeat. "As you can see, there have been two, but one is reverting, as we don't see a heart in it" the doctor said. We were just glad that one had made it and that there was a heartbeat! 2 weeks later we did an ultrasound again. I didn’t want to look, as I explained that there had been two, but now there was only one. “Let’s see” said the midwife “you said there should only be one? I see two here with nice hearts that beat!” The happiness was immense!
July 17, 2019, Julie and Vincent came to the world via natural childbirth