Heterologous fertilization in Italy: egg donation is an obstacle course. Alice’s testimony
What does it mean for a couple and in particular for a woman to face an egg donation process?
We talk about it thanks to the testimony of one of our readers, Alice, who told us in this interview about her infertility problem, the difficulties and obstacles encountered in the search for a child, how and where she arrived at heterologous fertilization (in her case egg donation ) and the path it is currently following.
Alice, how did you find out about your infertility problem?
Today I am 34 years old. My husband and I began the search for a child when I turned 31, 2 years after we got married. I discovered I had infertility problems at 32, when after almost a year of research, “with the traditional method”, nothing happened; every month the period arrived on time. At the age of 33, the diagnosis of primary infertility arrived. After countless hormonal dosages, countless gynecological visits and “very nice” specific tests, such as hysteroscopies (first diagnostic, then operative because apparently I have a narrow cervical canal) and hysterosalpingographies, the only test I was missing was the dosage of anti – Müllerian hormone. My gynecologist, no longer knowing where to turn to, given the perfect results of the whole list of tests listed above, decided to have me dose the anti-Müllerian hormone; which today I depict as the black man who comes out of the closet at night, while I sleep safe in my bed.
The anti-Müllerian hormone or AMH is measured by a very simple blood test. It is not an exam included in the mandatory pre-conception exams (which I had performed). In my region (Lombardy), it is not loanable and costs 63 euros. The amh defines “how much time we have left” before our ovarian reserve runs out. Ergo, it establishes our probabilities of a natural conception without problems, in the absence of other male and female pathologies. The higher the value and the more it means that our ovaries are young, the lower and the more it means that we are approaching menopause. My result was 0.33. In the tables of the range of values indicated by the analysis laboratory, it was not even contemplated. My childbearing age was equal to that of a 48-year-old woman.
I guess it was a very bad blow to absorb..
It was July 2018 when I found out I couldn’t have children. I remember that I spent 3 days crying nonstop, until my gynecologist suggested that I try the path of medically assisted procreation (MAP), even if with little probability of success.
I would like to point out that at the time I had a very regular cycle, every 28 days, abundant the first 3 days and less intense the following 5. Nothing had changed compared to usual. I’ve never had any gynecological or urinary tract infections and I’ve always had annual checkups at my trusted gynecologist, combined with pap smears, which are always negative every 2 years. Nothing suggested that I could never have children, as everyone wishes they had . Never, ever, would I have imagined embarking on the path of medically assisted procreation to make our dream of expanding a family come true. Never, ever, I wanted to find myself in this situation.But without wanting to, and without any sign that could predict my infertility, I found myself there; and it was terrible. I don’t wish that on anyone.
How did you start looking for a clinic to address the path of ART?
As suggested by my gynecologist, we start looking for a clinic that can follow us for PMA. We started from Switzerland, but then we discover that we can take advantage of 3 attempts paid by the NHS in our region. From this point of view we were very alone. My gynecologist who is not an expert in infertility did not direct us anywhere, we went on word of mouth trust. On experiences lived by friends and acquaintances. Having set aside Switzerland, which gave us “good chances of success” at a cost of 13,000 euros , with no guarantee that things would go well, we landed in Florence, at a private center with which we have an agreement for our first attempt at homologous fertilization.
How was this first attempt?
The doctor who visited me was clear: “You have very little chance of success. What did you do to have such bad AMH? She must gain weight, as she is she will never get pregnant ”.
Humiliated, mortified, with enormous feelings of guilt (useless, because the situation I found myself in was not anyone’s fault), I try to swallow the bitter pill and listen to those who tell me to trust professionals (doctors). I submit to the therapeutic protocol prescribed to me, some drugs have passed through the NHS, others have not, but even here, I find obstacles.
My general practitioner who has to transcribe the treatment plan opposes me by telling me that he cannot prescribe medicines that have been indicated by a doctor from another region. According to him I have to pay for everything. Fortunately, I mention the name of a friend of mine, a patient of his who had undergone the same treatment in the same Tuscan clinic no less than a year earlier, to which he had prescribed the drugs without much fuss.
In over thirty years of professional relationship with the same general practitioner, that was the first time I went to ask him anything. I’ve never had any illnesses, I’ve never asked for a loan, I’ve always done all the exams I’ve done for a fee. Obviously embarrassed, he prescribes me the drugs, also because the next day, I had him call from the ASL of my province where I had inquired about the exemption of some drugs and the fact that he didn’t want to prescribe them. The same day, the ASL contacted him to explain my situation and during the day he contacted me again telling me to come to the office to collect the prescriptions to which I was entitled, as per note 74 .
A small engraved; in this path, which is very difficult in emotional and psychological terms, as well as physical, I have found a lot of solitude .
Many confused doctors, some incompetent, others with many prejudices against assisted fertilization treatments.
The first attempt at homologous (assisted fertilization between partners), fails even before starting. The therapy is suspended after 9 days of treatment. My ovaries are sleeping.
Luckily my husband takes matters into his own hands and contacts a center of excellence in our region, Lombardy.
What chances did they give you in this second attempt?
Here, already at the first interview, I’m almost convinced to opt for heterologous with egg donation (assisted fertilization where the male gamete of the partner is used and the female gamete of a donor external to the couple).
The doctor looks at the tests done so far, and gives me the report: “primary infertility, low probability of success, PMA attempt set for March 2019”. It was December 2018. In just 3 months, with the NHS we would have made an attempt at assisted fertilization, but homologous because it is not heterologous in that center. I make my second attempt, I am filled with hormones, my ovaries are so swollen that at the end of the treatment I can hardly even walk. The result is a little more encouraging. At least I arrive at the transfer, but on the day of the beta HCG dosage, I read a nice NEGATIVE.
I close the homologous chapter definitively, encouraged by the words of the biologist who on the day of the transfer of my only embryo that survived on the second day, while I was there with my legs in the air, very excited, told me that of the 6 oocytes recovered, only 1 arrived alive on the second day, … on the other hand the quality of my oocytes is really poor.
The exciting moment of the transfer was ruined by his words, in that exact instant I understood that all the injections, the pills, the wake-up calls at dawn to evaluate the hormonal growth with blood tests, the trips every other day from my city in Milan (200 km round trip), the queues, the traffic, the lies and work permits… were of no use.
At this point, egg donation appears to be a valid viable alternative. Have you ever had second thoughts about this choice?
My husband is a little disappointed not to be able to see a little me, in a much desired future child of ours, but I explain to him that we will still see 50% of little him and that carrying him in the belly for 9 months will mean much more than a genetic similarity, dependent on DNA. We search, we document ourselves, luckily I discover the “Egg Donation” forum where I get a lot of useful information and real support, which I lack in real life.
Without that, I would have been alone, as until then. I discover that in Italy, we are still entitled to 2 attempts with the SSN. The heterologous service has been granted since 2014. The problem is where? And who does it?
In Italy there are few public or affiliated centers that carry out heterologous fertilization with very long waiting lists. If you do it privately, you pay for everything, for a minimum cost of around 8,000 euros. The oocytes arrive for the most part almost always from Spain and, privately, the waiting times are a few months.
Some centers fertilize the oocytes from foreign banks in Italy, others send the male sperm abroad, fertilize the oocytes and fresh and then freeze the blastocysts which are sent back to Italy.
All this coming and going of gametes and embryos happens because in Italy there is no advertising campaign in this regard, there are no donors, there are no oocyte banks, and there is no compensation for those who donate gametes.
Also thanks to the “egg donation” forum, I find a center in Italy, public, in Tuscany, which performs heterologous PMA. This is the Careggi hospital in Florence .
Here, for all Tuscan women, the service is paid for by the NHS, while for those coming from outside the region, they have to pay in full as if they were getting all the treatment as a private person. I discover, by contacting the PMA heterologous service of the Careggi Hospital directly, where I find a very cordial, well-prepared person who answers all my questions, that an agreement has been signed between the Tuscany and Lombardy regions, for which I, a Lombard, can access the treatment by paying a maxi ticket of 500 euros. Obviously I will have to be placed on the waiting list and wait my turn.
I couldn’t believe I was so lucky. At the end of April 2019 I contact the hospital, I ask to make a first appointment, which I am given for May 8, 2019. Very soon. At the visit we bring all the tests done up to that moment, a joint interview is performed between us, an andrologist and a gynecologist. I leave satisfied with the professionalism, transparency and humanity that doctors show me.
Things that honestly until then I struggled to find. They ask us for some additional tests and the usual spermiogram, but all to be done at their facility. Obviously coming from outside the region, we try to concentrate everything on the same date. The first useful date, with SSN, is 22 October 2019. From that date, hopefully, we will be listed and our first egg donation attempt will be performed in May 2020.
Despair takes over. I had to wait another year and a half. Just to make an attempt, which maybe would not have been successful.
We understood then that the heterologous in Italy in public or affiliated centers is still a mirage. We were outraged by the differences between regions. Why isn’t there a hospital that carries out heterologous PMA in every province? Why is there a law that allows it, if in fact there are so many impediments?
Thus, despite having the right to be treated in our country, we are forced to go to a private center and opt for abroad. We are forced to pay for everything out of pocket. After various emails to PMA centers in the Czech Republic, Ukraine, Switzerland and Spain, we decide to be followed in Spain.
The day I sent the email, I was called back in the same afternoon, to set up a first free interview via skype. So I sent all the tests done up to that moment. The doctor in charge of the center and our interpreter were present at the interview. The doctor understood Italian perfectly, but she spoke in Spanish, but still we had our own very good and sweet interpreter.
We like them, and a lot. For the first time I feel that the mileage is not a problem. Technology, the internet, the mobile phone come to our aid.
In Spain everything seems simpler. You don’t need to go directly to the clinic to book a visit or spend hours on a phone that is always busy, as happens in Italy. In Spain, everything seems to work out. Mostly we talk via email, but they don’t hesitate to contact me on my cell phone to update me on our situation.
In mid-May we decide to keep the doors of Careggi open and try our first egg donation in Spain. For work reasons, being absent for a week, without much notice, is difficult for us. We ask the clinic if it is possible to schedule the attempt for the two central weeks of August (our summer holidays). They tell us that there is no problem, that they will synchronize my cycle and that of the donor, in order to do the whole procedure fresh, by taking the pill.
August arrives and we decide to book a 10-day vacation in Bilbao. Beautiful city, very livable, but chilly. In mid-August we never exceeded 24 degrees and the lows were around 15 degrees. Obviously no swimming in the ocean, you couldn’t risk an infection from sand etc. or a simple flu.
We make our first egg donation attempt, third of PMA. Our angel, our donor, the woman who will allow me to be a mother, the one who will give 50% of her genetic heritage to my son, produces 10 oocytes. 9 are fertilized and grow, with my husband’s seed.
After 5 days, only one arrives at the blastocyst, much to the amazement of the center itself. On August 19, I undergo the transfer of my embryo, as the doctor in the transfer room called ” El Pequenito “.
After 12 days I submit to the Beta HCG dosage and again I discover that it is undetectable. A new negative.
The day after the betas, the clinic contacts us to talk to us. They are mortified by the result, sorry for our pain (in Italy no one has ever contacted me to tell me they were sorry). Given the result, some details about my husband probably missed, and he seemed fine from the routine tests.
So they ask us to make another attempt, paid for by them, but they also ask my husband to perform some specific tests on sperm DNA fragmentation
We will. We will not give up, even if we fly to Spain to have a simple blood test.
To date, the total cost of examinations, visits and attempts, airline tickets and stays, amounts to over 20,000 euros . If in our country, I had found doctors more prepared on exemptions, if it was really possible to do the heterologist as required by our law, I would have spent perhaps 5,000.
I conclude by saying that it is not true that you can have children at 40 or 50.
Famous women who flaunt their offspring at that age must also tell the truth so as not to delude us poor things. They have the responsibility to say that that child arrived with PMA. It is not true that there is time to have children. I probably should have had children no later than 25, but at the time I didn’t have the right conditions to start a family. That’s why it’s time to talk more about social freezing .
I could have frozen my eggs at 20 if there had been information, I could have saved my husband and I from this ordeal, a lot of money, both for us and for the NHS.
Kathryn Barlow is an OB/GYN doctor, which is the medical specialty that deals with the care of women's reproductive health, including pregnancy and childbirth.
Obstetricians provide care to women during pregnancy, labor, and delivery, while gynecologists focus on the health of the female reproductive system, including the ovaries, uterus, vagina, and breasts. OB/GYN doctors are trained to provide medical and surgical care for a wide range of conditions related to women's reproductive health.