In this webinar, Ofra Balaban Kasztelanski, Founder and the Chair of CHEN – Patient Fertility Association has been discussing the importance of communication between your fertility doctor with your other professional doctors and how your treatment should be managed.
CHEN – Patient Fertility Association, in Israel, is a member of the umbrella organization “Fertility Europe.”
The topic presented by Ofra is a very important one among infertile patients because the fertility journey is a long, frustrating, and difficult one for anybody. She states that:
It goes along with shame sometimes, taboo, nobody to speak with, and everybody thinks that is the only one in the world who couldn’t conceive and need medical assistance to do that.
Ofra goes on by saying that this journey comes:
with some kind of self-frustration, self-taboo and nobody speaks about it.
This association was founded after her personal experience: She and her husband tried to conceive for 7 years, and they didn’t have anybody to speak with. They couldn’t consult with anybody but, finally, they managed to have 2 children; one is 22, and the eldest one is 26.
The association was founded for infertile patients to provide emotional and informational support to the big job of changing laws, like the law of Egg Donation. In Israel, it’s easy as they have the religious parties in the Israeli Parliament, “The Knesset.” According to Ofra, it was the first amendment to reproduce, and she had all the assistance and support she needed in the Parliament. Even though it took 13 years to change the law of Egg Donation, in 2010 she succeeded.
Now, in Israel, everyone can donate, with some restrictions, and the donation of eggs comes with a price: The donor receives about 20,000 ILS for every attempt. The woman can do it only three times, and it comes from the Ministry of Health. Therefore, it was considered a huge law.
Currently, Ofra wants to change the law for embryo donation which isn’t allowed in Israel; nevertheless, she states:
I’m optimistic, and I know I will succeed.
The association has around 5,000 members, and it’s fully volunteered. This is one of the few NGOs in Israel.
One of the aspects of managing an infertile treatment, as probably known, is doing a one-month cycle, rest a little bit and then undergo another cycle. This will be managed by the doctor but, if the patient has another problem (such as chronical ones), and gynaecologists aren’t familiar with the issue, it might be a big obstacle to move on regarding medicine, other situations and so on.
Ofra goes on by mentioning her important research, only the pilot, done along with her co-partner Dr Rachel Beery. The founder of CHEN states the following:
The way to create a happy family is not always natural (…) and not everybody can do that. In Israel, it’s about 10% of the couples or in Europe close to 5,000 (5% of the couples) and we know that about 25 million couples in Europe are suffering from infertility and need doctors to assist them in conceiving.
In CHEN, the small pilot research was conducted together with Dr. Berry, a biologist, volunteer, and board member of the association.
They conducted a questionnaire to three groups of participants:
A questionnaire was given to all groups, and they were asked what happens to a patient who suffers from more than one chronic condition like diabetes and also needs IVF treatment.
Ofra Balaban Kasztelanski explains the following three facts after analysing the answers to her research:
According to Ofra, this last fact is a very unhealthy situation because “as a patient, we know very good our own situation and our condition, but we cannot take any medical decisions.” While doing IVF, the patient needs a decision almost every day, so it’s crucial that the two doctors, that deal with the same patient, have an open talking line. Nevertheless, Ofra says, it doesn’t happen.
Ofra emphasizes that IVF is a chronic treatment but happens 10 days per month (not every month). However, people can learn or change the treatment in every cycle and, according to tests, doctors can decide how many hormones the woman has to get. If she’s diabetic, she also needs to consult with a diabetic doctor again and again.
Ofra reiterates that this is crucial because, otherwise, the medication will not work or will bring her diabetic situation to some high or low levels of sugar in her blood, and it can be dangerous for her. Therefore, Ofra says the following:
Sometimes, the communication between the doctors can save lives. So, we need to change the situation. We need our doctors to speak with each other.
Ofra describes her own personal experience by saying that she had 2 chronic conditions: Arthritis and Crohn’s disease. This last disease is a problem in the stomach and a rheumatic disease in the joints. The major problem was the stomach.
After 2 years, when she saw that nothing worked, she went to her gastroenterologist and said:
Listen, I’m on an IVF treatment and nothing works. I need to know why, and I need you to speak with my gynaecologist.
Ofra took the prescribed medications that stopped her ovulation, which is a monthly cycle that brings the egg to the womb. This problematic issue was only medication, says Ofra. She had to change her medication because her ovaries didn’t ovulate at all, and she didn’t have any ovulation needed for the IVF cycle. She returned to her gynaecologist to say that her gastroenterologist was waiting for her phone call. After that, her medication changed, and she started ovulating. In Ofra’s words:
I lost 2 years in the fertility treatment just because of the wrong medication. So, imagine yourself as a diabetic, it can be a disaster.
After talking about her personal experience, Ofra mentions one of the holidays in Israel called “Hanukkah.” She goes on by showing a spin-off to mention that with the letters it says, “A miracle happened here.” Children play with it as well. The miracle, according to the traditional story, was that there was only one bottle of oil to light the synagogue, and nobody knew how to make it last for the 8 days of the holiday. The miracle was that the small amount of oil in the bottle to light the candles (menorah) was enough for eight days. Ofra concludes by saying the following:
Hanukkah is always close to New Year and always close to Christmas, so all the religions are very close and celebrate miracles that happen as the year changes. We sometimes need a miracle to conceive. Sometimes we need a miracle to keep the pregnancy, and we always need a miracle to give birth to a healthy child and to have a happy family created.
I would advise you to change your doctor because a doctor that doesn’t want to be with you on your journey is not the doctor you need. Sometimes, people said okay, but he’s very professional, but you need to realize that a good doctor is a doctor that gives you the answers you need, and this is important for your journey. If he doesn’t want to speak and you don’t want to change him, it’s a difficult situation, but as he always says he’s busy, perhaps convince your gynecologist to call him. They need to speak because it’s crucial for you, I don’t know about your condition, but in my opinion, a good doctor is a doctor that answers your questions, cooperates with the other doctor especially, with such a sensitive situation.
At 37, the egg quality starts declining because we know that the average decline of women’s fertility is 27, but after 35, it’s declining a lot faster. I’m not a doctor, so keep in mind that you have to consult your doctor, but you need to ask your doctor what to do and what will be the right way because low ovarian reserve means that in a year or two, you will not be able to produce good eggs. Maybe the best thing to do is to get as many eggs as you can now and freeze them. Egg freezing, as we know, is a very efficient way of preserving your fertility for the upcoming years, but it’s a medical question, and so, I would advise you to check it with your doctor.
I don’t know what will be the likelihood of live birth, but the embryo transfer can be about 10 to 15%, however, I am not sure about it. To have a successful IVF treatment, you need good eggs, good sperm, and a good womb with the ability to conceive. Again, you must ask your doctor about it. In Israel, we recommend implementing only one embryo at a time and freeze the other embryos for the next time. It’s also a medical decision, and I don’t want you to be disappointed, but I really want you to ask your doctor because it might be that you have very good embryos and if they have eight cells 3-day, they are probably very good embryos, and I wish you all the success.
An embryo with 8 cells means that the embryo has divided well, we don’t know anything about genetics, though. If we want to be sure, you can ask the doctors to take one cell out of the embryo and then to do a genetic test, then you will have the information about the genetics, and you’ll know if they are of good quality. The problem with eggs is that we are born with a certain number of eggs, so if I’m 60, my eggs are 60, as long as we are getting older, our oocytes are getting older too. The problem is that if oocytes are getting older, it means there are mistakes in the genes or chromosomal abnormalities. So have an open discussion with your doctor to get all the details and what your best options are.
Endometriosis is a very difficult disease, it means that the fluid from the womb that usually goes out with our monthly period is not completely out, and if it’s not completely out, it means it remains either in the womb or outside of the womb and makes some kind of problems, and it’s damaging the wall of the womb and of course blocking the tubes. I don’t know your age but what I think you need to do is to ask your doctor the treats you about the endometriosis situation, this is the first thing. The second thing is as your hormone levels are not checked, it’s a bit of a problem because endometriosis is something that reacts to hormones.
Actually, if we want to put it that way, the treatment against endometriosis is taking birth control pills, so it’s hormone-dependent, it’s a very delicate situation. It’s a must that the doctor that deals with your endometriosis will speak with the doctor that you are doing IVF with. Regarding high blood pressure, it’s something that has to be dealt with before IVF treatment, so if you have time, first of all, balance your high blood pressure and then balance your endometriosis and then go for IVF treatment. I’ve talked about the link between the patient and the doctor, so you should ask each one of the doctors.
You should ask the questions, get from them the answers and send the answer to the other doctor, all the doctor must consult, but if they don’t, you have to circulate all the answers and get to a conclusion. Otherwise, you have to wait and see that high blood pressure is balanced, and of course, endometriosis is in a good condition.
It’s good that you’re eating healthily, first of all, balance your weight. Again, this is a medical question, and you need to ask your doctor about it. You should not do anything about changing your cycle, it’s the doctor to think about what can be the problem and if anything should be changed.
Sometimes, choosing a clinic is a personal choice. Sometimes, it’s better to ask your doctor who is recommending some centers because every doctor has some connections with somebody. I have a feeling that if he sent you to a clinic, he probably may be in touch with them and connect with them during the treatments, so maybe you can ask your doctor which clinic he recommends. As you already had 2 failed attempts, now you do know the feeling and how it is when a doctor is not speaking to you, so you know what you are looking for, you need a doctor that will treat you and communicate, you need a clinic that has a good rate. In every country, you can check on the ministry of health sites, they have some lists of clinics, so it might be a good way to look for a new clinic if it’s in a country that has such things. Try to look for more information than usual, now you have a little bit of experience, so try to listen and ask the questions.
