Because Anna’s story covers many topics, it was published in two separate articles. In the first part, we talked about her struggle with endometriosis, and in this second article, she tells us about her current journey through IVF.
Anna* is 35 years old and has been struggling with endometriosis since puberty. Like many women her age, it took her more than ten years to get an endometriosis diagnosis, and she had to suffer a lot along the way. It was when Anna started to try getting pregnant that she experienced the full-blown, debilitating symptoms of severe endometriosis. After having to go through surgery to remove as many lesions as possible, she learned that IVF would be her only hope to get pregnant.
*Anna's name has been changed since this subject is very personal.
In 2019, you had surgery to remove endometriosis lesions and relieve you from the terrible pain you were experiencing. What happened next in your fertility journey? Did you feel ready at this point to start treatments?
Anna - We had a new consult with the fertility (REI) department at Kaiser. But I was not ready to start anything; this appointment was more to check in, let them know that I had the surgery, and understand what our options were moving forward.
They told us that to maximize the effect of surgery, we had to start treatments in the next six months because new endometriosis lesions can develop quickly. I was 30 years old at the time, so there was no particular rush because of my age; it was really because of endometriosis. The timing was even more complex because I had deep vein thrombosis (DVT) following the surgery that required me to take medication for three months, during which I couldn’t start fertility treatments.
After these three months of treatment for DVT, I had a blood draw to check that everything was back to normal, and it was. We decided to go on a trip and do something nice for the two of us to end 2019 nicely and start fertility treatments at the beginning of 2020, just six months after the surgery. We went to New Zealand and I felt that I was able to live again - hiking Mount Doom was not something I would have imagined being able to do 6 months before and yet I did it! Then in January 2020, I started the stimulation process for IVF.
How did you feel about starting IVF?
We had accepted the fact that we had to go through IVF. There was no other option for us since I had my fallopian tubes removed because of endometriosis. I think we were on autopilot for the previous year, so we didn’t overthink it and just followed the steps outlined by the doctors. I was however a bit scared as I had been on birth control pills, and that I would have to stop it and so the endometriosis might start expanding again.
Did you do additional testing before starting?
I remember having my ovarian reserve checked, but they didn’t say anything special about the results. I looked at them myself online and understood that my ovarian reserve was very low and nearly at the levels of a menopausal woman. I was devastated, but I never really talked about these results with the doctor.
My husband had a semen analysis, and his results were not very good, but not too bad either. We just had to do a special kind of IVF, which is called IVF with ICSI, where they select a single spermatozoid and inject it directly into the egg.
Were you dreading the hormonal stimulation and the injections?
Yes! Especially since hormonal treatments can worsen endometriosis symptoms and also because I am not a big fan of needles at all.
Are there modified IVF protocols available for endometriosis patients?
Yes, but I didn’t know about it then, and Kaiser didn’t offer it.
How did the stimulation go? You had injections in the past to treat the deep vein thrombosis (DVT) that occurred after your endometriosis surgery, and these injections didn’t go well. It probably didn’t help you feel confident about starting the stimulation protocol, right?
Yes, I was stressed, and I needed to have about forty injections over several days. My husband did the injections because I didn’t want to do them myself. He was a little anxious about it, of course; he was scared to hurt me or to do it wrong, but he still did it because we had no choice. We asked if I could come to the medical office so they could give me the injections, but they said it was not possible. But in the end, the injections were not too bad and were smoother than the DVT ones. Towards the end of the protocol, it started to feel a bit overwhelming though.
Did the stimulation treatment have a strong effect on you? How did you feel?
It was okay; my follicles were responding to the treatments and growing.
Did you have an idea of the number of follicles you could expect?
No, they didn’t tell me what we could expect, and I didn’t check myself. At the time, I didn’t have much knowledge about IVF.
After the stimulation, they induce ovulation and retrieve the eggs. How did you feel about the egg retrieval?
I was a little anxious. It is a medical procedure with anesthesia, and you have no idea how many follicles they will be able to retrieve. When I was prepping for surgery, somebody told the woman next to me in the surgery center that they had retrieved no follicles. It was stressful to hear about such a terrible outcome just before going in for the retrieval myself.
After the procedure, they told me they had retrieved six good follicles and two smaller ones. On the ovary, where I had the biggest cyst from endometriosis, I had no follicles. However, it was not a surprise because, during the stimulation, they noticed that this ovary was not responding to the treatment. Six good follicles were better than zero, but I knew it was not much.
The next step was to wait to find out if the eggs were mature and how much had fertilized with your husband’s spermatozoids.
Yes, they called about three days later and then two days later. On day 5 after retrieval, we had one egg that had fertilized and became a blastocyst (that’s a five-day embryo).
Before the egg retrieval, fertility centers usually ask if you want to have your embryo(s) tested to know if the embryo(s) have the correct number of chromosomes to reduce your risk of failed embryo implantation or miscarriage. Did you choose to do this genetic testing?
Yes. At the time, we hoped we would get several embryos, and they advised us to do this testing. Because we just had one embryo, this was probably not very useful, but they still did it.
Genetic testing usually takes one to two weeks to get the results. How was the wait?
It was alright. When we got the results, we were relieved that the embryo was genetically ok. Then, the doctor asked us if we wanted to find out the baby's gender. I didn’t understand the question and said “yes”, but actually we didn’t want to know, so we received an email with the detailed results and the gender of the embryo. I really wish we hadn’t found out the gender because even if you don’t want to, you start picturing a baby, and it’s not just an embryo anymore, so the disappointment hits even harder if the embryo doesn’t implant.
How long after getting the genetic testing results did they plan the embryo transfer?
Initially the plan was to do a “fresh” transfer (without freezing the embryo) in the same cycle as the retrieval, but during the retrieval there was bleeding in the uterus and the doctors decided to switch to a frozen transfer in my next cycle. The doctor had also quickly offered to do a shot of a medication called Lupron that induces artificial menopause and “quiets” inflammation due to endometriosis – we did not really measure this option at the time and didn’t pursue it, as artificial menopause had many possible downsides. I started the treatment for the embryo transfer, but unfortunately, the COVID-19 pandemic happened and I had to stop it because everything was canceled.
It must have been pretty upsetting to have to stop.
Yes, it was frustrating because we had no idea when things would return to normal, and we were afraid of getting COVID ourselves. The pandemic was really hard for us because we wanted to avoid catching the virus to be able to resume our embryo transfer as soon as possible. So we were very careful; we didn’t see anybody and didn’t want to take any risks. We didn’t even want to meet people outdoors. The fertility center resumed its activities in June, so we were just waiting at home for three months.
Were you still symptom-free from your endometriosis?
No, after the egg retrieval, I started experiencing pain again. It was pretty bad, as bad as it was before the endometriosis surgery. My first period after the egg retrieval was terrible. We went away for the weekend to change our minds, and I was stuck in pain in the hotel bedroom when it happened.
After that, they changed the pill I was taking. I believe the first one was a low-dose birth-control pill so they switched to a full-dose pill that I am still using to this day to reduce the endometriosis symptoms. The pain was better after that, but emotionally, it was hard for me, and I reached a low point because it felt like the surgery was for nothing since I was again in so much pain. I was dreading having my period before the embryo transfer, and it felt like if my uterus was such a hostile environment; how could a baby implant in it?
So, in a way, the forced break due to the pandemic was maybe not a bad thing because it allowed me to get through this difficult phase.
When you could finally schedule the embryo transfer, what was your state of mind? Did you still believe that your body was a hostile environment? Were you able to be optimistic about the outcome?
I was happy to be able to resume treatments and move forward. To prepare for a frozen embryo transfer, you take medication to help grow your uterine lining, but the treatment was not working as expected. They found fluid in my lining, probably blood, so they had to change my medication several times. They switched to patches, but I was afraid that I was not receiving enough medication. My REI was out sick for a few days, and it felt like I was not receiving thorough care.
Because of the pandemic, my husband was not allowed to be there during the embryo transfer. So, in a way, I was happy that the transfer was happening, but I was sad that he couldn’t be here. That was not how I envisioned things. But the transfer was still a good, positive experience. The doctor said that everything went well, so I was hopeful.
Did you feel that you were pregnant until proven otherwise after the transfer?
No, I tried not to overthink it. I didn’t want to get my hopes up.
You had about nine days to wait for the result of the embryo transfer. For many people, this wait is like torture. Was it the case for you?
It was long, but it was easier than I had anticipated. I started reading and listening to podcasts about other people’s experiences with IVF.
Did these stories help you?
Sometimes yes, sometimes no. It depended on the mood I was in. Sometimes, it helped me feel less alone; other times, I was mad that it was only stories of people who ultimately managed to get successfully pregnant. And the worst of all were the stories of people who miraculously got pregnant “naturally”; I knew that, in my case, it was impossible since I had my fallopian tubes removed. It felt that these stories were falsely giving the impression that if you keep on trying, you will get pregnant, and that’s just not true; in the end, not everyone gets to have a baby.
At this point, did your friends and family know about your fertility struggles?
Yes, we had started to tell our family and closest friends.
Was it easy for you to talk about it?
It was easy because since I had endometriosis and encountered a lot of health issues before doing IVF, most of the people around us knew about our situation at this point.
How did they react to the fact that you were undergoing IVF?
They were supportive and considerate.
Did you manage to wait for the blood draw to know the embryo transfer result or did you take an at-home pregnancy test?
I was able to wait. I know that many women usually test at home before the official blood draw, but I didn’t need it; I was afraid to test too early and get a false negative.
When the day of the blood draw finally arrived, how were you feeling?
I don’t like needles, so it’s never easy for me, but I was happy and hopeful.
Then, during the morning, I received the phone call with the results. It was the doctor calling, and I don’t know why, I thought that it would be a nurse calling, so from the moment I answered the call I had a bad feeling. Unfortunately, it was a negative result; the embryo failed to implant.
It was a weird feeling because I was extremely sad and at the same time, it felt like an out-of-time moment. I was trying not to cry, and I didn’t know what to say. But as soon as I hung up, I broke down.
Did the doctor say anything else during this call? Did she talk about the possible next steps?
She offered to talk about the next steps but we declined as we were shocked by the negative outcome. She said we would talk more later.
Were you with your husband at the time of this phone call?
Yes, he was still working from home at this point. It was a good thing that we were together. He was also very sad.
How did you react afterward? Did you need time to heal, or were you ready to try again?
The first day was very hard for both of us, but then we accepted the situation. We were curious to see what our doctor suggested for us going forward. I was not very aware of the IVF process when we started, but since then, I have been able to educate myself. I felt that the number of follicles and embryos I got for my age was low. I hoped she would come up with a different treatment and strategy than what we did for this first IVF cycle.
We had a call with the doctor about ten days after the results. She started talking about the option to use a surrogate to carry the baby. I don’t really remember her rationale for going this route (one argument was that the embryo was good genetically so it was more likely to be an issue with my uterus), but it didn’t really make sense for us. She then mentioned the possibility of Lupron shots to tame down inflammation, but noted that it was not affecting outcomes statistically, and to do an hysteroscopy to have a better idea of the state of my uterus. After this appointment, my husband and I decided to ask for a second opinion outside of Kaiser. It would mean switching insurance providers for us, which is a big thing. But we felt we needed to think about it; otherwise, we would be stuck with Kaiser. It was the end of summer, so we had a few months ahead of us to make the decision to enroll in a new health insurance plan.
Did you know which fertility centers and doctors you wanted to consult?
I talked with two friends who went successfully through IVF in the Bay Area with two different centers, so we made an appointment to have an initial consultation with these two centers before switching insurance.
These fertility centers were very different; the first was a big center with many reproductive endocrinology and infertility (REI) specialists, whereas the second had only one REI. The REI in the second fertility center didn’t want to take our case because he felt that a larger medical center that would cover all branches of medicine was a better fit because of my medical history of endometriosis and DVT. We were disappointed, it reinforced our feeling that we were a “tough case,” but we appreciated his honesty. We had a good first consultation with the REI in the first big center. This REI suggested we did a protocol specific for endometriosis patients, and she seemed very positive; she told us that there were things to try before considering surrogacy, like doing IVF with an egg donor since my ovarian reserve was low. She thought that a new stimulation cycle would yield only 0 or 1 embryo and that there was a risk of infection if they punctured through an endometriosis cyst during retrieval, or that the cysts could prevent access to follicles.
You had realized your ovarian reserve was low, but how did it feel to be told that egg donation was probably the next step?
It was like a confirmation that my body was not doing its job correctly and that I was “expired,” so of course, it’s not a really good feeling. But because Kaiser started talking to us about surrogacy, we had already started discussing other options with my husband, like egg donation and adoption.
After this appointment, we decided that this big fertility center was the right one for us, so we started the process of switching insurance. Shortly after the switch, I met my new ob-gyn doctor at Stanford Health to talk about my endometriosis. At this time, I had heard that there was a study showing that taking progesterone-only pills could increase your risk of having a specific type of brain tumor. But the ob-gyn reassured me about the pill. I also talked to her about our appointments with the fertility specialists and asked her opinion on doing another IVF round with my own eggs. She said that we could try to use my own eggs, but because of the results of the first IVF, using donor eggs was probably a good option. At this point, we had several doctors pointing us toward this option, so we chose it.
What were your thoughts on egg donation? What did you know about it?
At first, I knew nothing about it, and I didn’t know anyone who had done it, or at least that I knew of. So, I had a lot of questions, and I needed time to think about it. I was lucky to find someone who went through IVF with egg donation, and we talked about it; it helped me feel less alone. I could see that using egg donation was a complicated decision and not just for me, but it also showed me that if we decided to go this route, once I would hold my baby in my arms, DNA would probably not matter.
At first we also had concerns around the ethical aspects of egg donation since it can be seen as women “selling” part of their bodies, since donors are paid in the USA. We researched the topic quite a bit and figured out that in many states such as California, there was a lot of regulations and structure and it was reassuring - it didn’t feel like something where donors could be exploited or exploit the opportunity.
My husband also needed some time to think about it. Still, if he had to choose between egg donation and adoption, it was quickly obvious to him that egg donation was his first choice because he felt that carrying a baby was important to me. But he understood that I would be the one not sharing my DNA with the baby, so it was a big decision for me, and he said that it was my choice to make.
Before making a decision, my REI at the new fertility center suggested that I do Endometrial Receptivity Analysis (ERA) testing. When doing an embryo transfer, people usually take progesterone for a standard number of days to prep their uterine lining for implantation. This test evaluates if a patient needs this standard number of days of progesterone, or more, or less. For this test, you take medication as if doing a frozen embryo transfer. At the time when they would typically transfer an embryo, they make a biopsy of your uterine lining to analyze it. We decided to do this test and the result was that I needed the standard number of days of progesterone and that my lining was nicely receptive.
At the same time, we had our first appointment with the person in charge of egg donation at the fertility center to learn more about the process. It was a long meeting with a lot of information on the choices we would have to make (how many eggs do you want, do you want to do a fresh or frozen embryo transfer, what donor egg bank do you want to use, etc.). It was overwhelming. But still, we decided to look at three of the banks. We chose these banks just because we liked their websites more. There were so many possible donors, and it was really overwhelming. How do you choose one donor among all these donors? It felt like we were on a dating website with photos and bios of women, and we didn’t know which information was important and relevant to make an informed decision. We felt a lot of pressure to make “the right choice.” We finally chose a donor but didn’t know the process after that. We should have contacted the egg donation bank first to put a hold on a cohort of eggs from the donor, and then you have three days for your fertility center to look at your choice, confirm it, and advise you if more testing is needed for the donor to make sure the egg is compatible with the sperm. However, we didn’t do it the right way and contacted the fertility center first, so when we contacted the bank afterward, it was too late; the donor was not available anymore. It was too much stress for us at this point, so we decided to take a break from the process.
During this break, I took some time to think about adoption. We talked with two couples living in the US with green cards who went through the adoption process, so they were in a similar situation to us.
How did you find these couples who went through adoption?
I asked someone I knew on Instagram who had a large following, and she posted a message on Instagram asking for people willing to share their experiences. It was great talking with these two couples.
What did you think at that time? Was adoption a plan B, or were you ready to start the process?
We took a long time to think about it. We turned to other projects that brought us happiness: we bought a house, and we adopted a puppy. But in the end, we knew that we wanted to try egg donation first. What helped us make this decision is that one of the couples told us that with adoption, you don’t control anything, especially if you want to adopt a newborn. With IVF, you don’t control much, but it felt that you can still have a little control, at least on the process, and for us who are control freaks, it seemed that it was probably the best option to start with.
Did you feel the pressure to make a decision quickly? That you needed to act fast?
Yes, and I still do. Even if we use egg donation or adoption, which means in both cases that we don’t have the time constraint of my biological clock, I don’t want to be an older mom.
So, you started looking at egg donors again?
Yes, we looked at online banks again, but we decided to go slow and not put pressure on ourselves. We also got back in touch with the fertility center, telling them that we were ready to start again. We soon found an egg donor that we liked, and this time, we did things the right way so we were able to get her eggs. The donor had done extensive genetic testing, and we knew that she was a carrier of an autosomal recessive disorder. To make sure my husband was not a carrier also, he had to take another genetic test. He did a saliva test first, which failed as there wasn’t enough genetic material in the sample, and then a blood test. It was a bit stressful again as there was a deadline of 60 days to get the results after selecting the donor. Thankfully, we got the results in time and he was not a carrier, so we could move forward with the egg donation process. We also had to choose how many eggs we wanted to get. We could take one or two cohorts; one is usually six frozen eggs. The choice depends on how many children you hope to have. If you want more than one child using the same donor, it’s better to get at least two cohorts. At first, we wanted to get two, but it is costly, and we were getting older, so we decided on one, knowing that we could get another one later from another egg donor if we really wanted to. I think cost can also vary from one bank to another, but we didn’t dig really deep into that aspect. We focused on finding a donor that matches our criterion - for instance with physical characteristics not too far from mine, and with as little health history as possible.
Did your health insurance cover egg donation?
No, it covers fertility treatments like IVF but not the cost of egg donation.
What were the next steps for doing IVF with an egg donor?
They had to ship the frozen donor eggs to the fertility center; the eggs were in the US, but not right here. We had multiple travel plans for that year and actually waited about six more months between the time we found the donor and when we started the cycle for the transfer. Right after returning from our last travels, I had a hysteroscopy to check if everything was clean and good in my uterus, during which the doctor removed a bit of scar tissue around the area where the embryo would be implanted. The eggs were then fertilized with my husband's spermatozoids to obtain embryos. It went well because all six eggs fertilized. After fertilization, the embryos are kept in culture for five days to reach the blastocyst stage. The center told us that one embryo looked really good and they chose this one to do a fresh transfer. They kept the remaining embryos to develop to see if they could also become blastocysts. We ended up having one other blastocyst that they froze for a future transfer if needed. We didn’t do genetic testing of the embryos this time because the eggs came from a young donor and we wanted to do a fresh transfer, which is not possible if you do the testing. One of the big reasons for doing a fresh transfer for us was to reduce the risks of losing an embryo due to freezing & thawing.
For this transfer, I didn’t need injections every day, just one at the end to trigger the ovulation. This protocol is a special one for endometriosis patients that requires fewer treatments and is more gentle. I tried this protocol when I did the ERA testing, and it worked well because I didn’t have any pain, and my uterus lining was thick enough to do an embryo transfer.
This time, my husband could be here with me for the transfer, and it was a great experience. We were confident and happy to be together for this crucial step. After the transfer, I really felt that I was pregnant until proven otherwise. I was happy, and we both really believed that it might work. We decided to go away during the 9-day wait, which was great for keeping us busy, and we could think about other things. Because we were not home, I didn’t do the blood draw for the pregnancy test at the fertility center but at a regular lab. At first, the technician told me that I would get the result the next day, which was not okay for us. We really wanted to know the result right away. But in the end, we managed to get it that day. Unfortunately, our REI called us in the afternoon and said the transfer didn’t work. We were devastated because we really thought that this time it was going to work.
We had an appointment set for two weeks later. This is the appointment when you either do an ultrasound to confirm the pregnancy or, if it didn’t work, discuss why it might have failed and what the next steps are if you want to try again.
How did you feel during the days between the results and before this appointment?
I felt guilty; I thought that it had to be because of me that it didn’t work. That it was due to a problem with my uterus and not because of the embryo. I thought about the things I did during the 9-day wait to try to find what I could have done wrong.
Even if you are a rational person with a scientific background, you couldn’t help yourself and focus only on what could have gone wrong on your side.
Yes, in these moments, there is no rational thinking; emotions just take over. My husband tried to tell me that it probably came from the embryo and maybe from his sperm. Another thought I had was that because I had some spotting on the day of my blood test, maybe my treatment was too light and was not enough to sustain a pregnancy. Or perhaps I didn’t take the medication as I was supposed to do.
We knew then that we had one more embryo frozen, so we had one more chance to try for a pregnancy. But we hoped that our REI would suggest another protocol to try and not just do the same as this previous cycle.
How did the appointment with your REI go? Did she suggest another protocol?
She told us that, unfortunately, she didn’t know why the transfer failed and that there was no obvious reason. She said that the fact that my period came early was not a cause of the failure but just the consequence of the embryo not implanting. She said the treatment protocol seemed appropriate because the blood tests and the ultrasounds before the transfer showed that my body was reacting correctly. She told us that the frozen embryo looked even better than the one we had just transferred, so this was good, reassuring news for the next transfer.
She told us that there was a new test for endometriosis patients that we could do called Receptiva. This test would measure the inflammation level caused by endometriosis inside the uterus. If it came back positive, then the recommendation would be to put me into artificial menopause for three months to calm the inflammation using Lupron and then do the transfer cycle. She didn’t seem really convinced by this test and didn’t push it on us. The other option was doing the same protocol as the last time.
Were you disappointed by this option?
Yes, a little bit. I would have liked to be told there is something that we can change and that will help. But unfortunately, things don’t work like that.
We didn’t want to do the test; it seemed pretty new, with insufficient data to back it up. Even our REI didn’t seem convinced. And I was afraid of being put in artificial menopause. I knew that artificial menopause is one of the treatment options to relieve endometriosis patients - it had been mentioned twice already by our former REI at Kaiser. Still, I was scared of the side effects that are the same ones as going through menopause: weight gain, hot flashes, mood swings, bone loss, etc.
We decided that we needed some time to think about our next step. But I still exchanged some emails with the fertility center asking more questions about the test: how much it costs, what the timing could be, and at some point, our REI offered us a third option. She said we could do two months of artificial menopause, without doing the test, just to calm my uterus inflammation and that this could help for implantation. We thought it was good to try something else, and it matched one of the options offered by the REI at Kaiser back then, so it seemed like a good option for us.I was ready to try this treatment protocol even if I was dreading the artificial menopause.
Can you explain how they induced artificial menopause?
Yes, you receive a Lupron injection that shuts down your ovaries and stops them from producing estrogen for 28 days, so I received two shots 28 days apart.
So you are currently in artificial menopause, which means that the embryo transfer should occur in about two months; how do you feel?
Good. So far, I am not experiencing any side effects from the treatment. We are excited to do this transfer. Our last transfer was five months ago, but we needed this time to get back on our feet and try again.
Are you able to live in the moment, or are you still anticipating every possible outcome and already preparing for what will come next if this doesn’t work?
No, we are focused on this transfer right now. We know we have other options if it doesn't work. We believe it will probably be our last transfer, and if it doesn’t work, we will probably turn to adoption, but who knows?
As we can imagine, going through this long and challenging IVF process must take a toll on your mental health. Did you and your husband feel the need to have support at some point?
Yes, of course. I started seeing a therapist around the time we switched fertility clinics; she helped me process my endometriosis diagnosis, and then I was able to talk with her throughout the IVF process, especially with egg donation. My husband also started seeing a therapist a little later and we had a few couples sessions to help us navigate all this. We highly recommend seeking the help of a psychologist if you are going through infertility, it really really helped us.
I heard that there was a psychological assessment when you are using egg donation, is that right?
Yes, there was one appointment with a psychologist that you can choose from a list. This appointment is an opportunity to talk with a therapist, but it is just one appointment, so I don’t think this is particularly helpful. But maybe if you are not already seeing a therapist, it’s better than nothing. She checked that we were aware of all the aspects related to egg donation and whether we had time to think about it.
Do you feel that going through IVF had an impact on your relationship with your husband?
In our case, it strengthened our relationship. We went through all of this, and it was difficult, but we still love each other. It makes me feel like we can go through anything.
Nowadays, people talk more and more freely about having to go through IVF, but we don’t hear many stories specifically about egg, sperm, or embryo donation. Do you feel this is still taboo?
I don’t know. I would probably not talk about it with anyone, but I feel comfortable talking about it with my friends. I would not keep it a secret if our transfer is successful. I think it’s important to talk about it.
In some countries, there is a limit on how many IVF cycles you can go through, and there is also sometimes an age limit for women to start a cycle. In the US, this is not the case. As long as you can pay for it and a doctor is okay with helping you, you can keep trying. Did you set any limits for yourselves, like a budget, a time frame, or a number of cycles that you are willing to go through?
No, after each cycle, we just followed our gut to decide if we wanted to take a break, keep trying, or stop. Today, our gut feeling tells us that this cycle will be our last, but maybe we will feel differently afterward. We will see. But we are both very open about what we think and want after each step. We strongly think it is okay to change your mind as your life evolves.
Did you start thinking at some point that you might not become parents?
Yes, of course, it’s one of the possible outcomes, and we knew that if we didn’t want to try anymore one day, it would be okay to consider stopping everything. Obviously, we would be sad, but we must consider this possibility.
Before facing infertility, it was a given for us that we would have kids; it was just a matter of how many. We never thought about a future without children. But during the IVF process, we slowly realized that maybe we would not be able to have kids. For me, anticipating this outcome is a way to prepare myself so that I would not be too defeated if it were to happen.
What do you think was the most challenging part of your IVF experience so far?
It’s probably the lack of support from fertility centers. Even though our current fertility center is really better than the first one, at times, we feel like we are just a number among their many patients. They are taking care of the medical side well, but there is no emotional support.
The administrative part of IVF is also challenging, and it feels like nothing is made to simplify the lives of patients going through IVF. For example, you need to order injectable drugs from specialized pharmacies located across the country, you cannot just go to your local pharmacy, so you are constantly stressed that maybe you will not get your prescription on time. You also need to spend a lot of time sorting everything out with your health insurance. There has to be an easier way.
What helps you through this? You talked about traveling and trying to find other projects. Is there anything else?
Having support from friends also helped me. As I mentioned before, seeing a therapist is also really important for me. Going for a walk to look at nature is helpful, and more generally being physically active has helped lift my spirits - for instance doing fitness group classes. My dog has been a huge help, too. Thanks to her, we clearly felt the difference between our first IVF transfer and the second one.
Do you have any advice for friends and family of people going through infertility?
No, I don’t really have any advice because I believe that each person is different, and what can help one person can make another person angry or sad. Maybe the best thing to do is ask the person what would help them. I would say that avoiding platitudes like “don’t worry; it will work out in the end” or things like that is essential.
Do you have any advice for people going through infertility? What did you learn along the way that you wish you had known sooner?
I cannot mention it enough: having psychological support through a therapist is essential; it has been beneficial for me to have someone who is listening to me and not giving me advice or saying platitudes, as I said.
Talk to your fertility clinic if you are stressed or if you have questions - even if you think the question is dumb, it probably isn’t and you will be better having the answer. For example one thing that was stressful for us was that each time you have a control appointment during the cycle, you have to expect a phone call during the afternoon, but sometimes at 5pm or 6pm the clinic had not called yet and I would start to freak out. I only talked about it with the doctor during the appointment after the 2nd failure, who reassured me that they would never not call and that they sometimes finished very late. Hopefully I will feel less stressed about this during this cycle!
Regarding endometriosis, I would say it’s important for women to listen to themselves and ask for a second or third opinion if they feel they have not been heard by their doctor. Do not be ashamed of being in pain, do not try to hide or minimize your pain, do not be ashamed to talk about it with close ones.Time is crucial for endometriosis; the sooner you are diagnosed and able to receive treatment, the better it is to slow or halt the progression of the disease.
UPDATE - This interview took place several months ago because I wanted to share the story of someone in the midst of their fertility journey. The emotions are stronger when you don’t know if the treatments are going to work or not. Since then, Anna was able to go through her last embryo transfer and here is some fresh news that she sent me.
Anna - The 2 months of artificial menopause went well, with no annoying side effects and they were very effective. In fact, so effective that my ovaries had a hard time getting back to work after that. When it was time to prep for the embryo transfer, we tried the same treatment as before (5 days of Letrozole and letting the ovaries work on their own to grow follicles and produce the sexual hormones needed to prep the lining). But it didn’t work this time, my ovaries didn’t want to wake up and do their job. We tried 5 more days with a bigger dose of Letrozole with no effects so the fertility doctor advised us to switch to a more classic protocol with pills of estrogens and progesterone (vaginal capsules and Intramuscular injections). It was a bit scary because we wanted to avoid the estrogens to keep my endometriosis quiet and it was mentally complicated to prepare myself for injections every day. Fortunately everything went well, no endometriosis pain this time, no major side effects even with the scary IM injections and my lining finally grew as expected. The transfer went smoothly and it was a beautiful moment shared with my husband. The 10 waiting days before the pregnancy test went pretty fast even though we decided to stay at home and rest this time. I stayed active but not as much as last time. And for our bigger joy, the pregnancy test came back positive. It was such an emotional moment to hear the sentence “congratulations, you are pregnant” for the first time. So far the pregnancy is going very well, we had 2 ultrasounds at the beginning with the fertility clinic and then we have started the classic path with an ob/gyn. We are very very happy after all these years of waiting and struggling and can’t wait to meet our baby in a few months. In the meantime we enjoy every time we get to see/hear them on an ultrasound.