Everyone Gets Pregnant Naturally and Then There is Us: Rima’s Journey with Unexplained Infertility
Rima and her husband have been walking their infertility journey for almost three and half years and are still unclear as to why they are having to battle infertility. Rima comes from a family of four children and her husband is one of eight children, with no known fertility challenges on either side. They each have siblings who have easily gotten pregnant naturally, while Rima and her husband have had to work through the unbearable pain of two miscarriages, struggle with stage three endometriosis, a failed intrauterine insemination (IUI), an unsuccessful round of in vitro fertilization (IVF), and countless months of trying to conceive naturally. Through all that they have endured, Rima and her husband are still fighting each day for answers, for hope, and for the opportunity to be the parents they have dreamed to be.
“I don’t know why, maybe it was a fear actually, but I always had the unsubstantiated thought: what if I can’t have kids when I’m older? What if I’m going to be that person that is going to have a hard time conceiving? I don’t know if it was my inner voice trying to warn me. I don’t know what happened.”
EVERYONE GETS PREGNANT NATURALLY. THEN THERE IS US.
“We were 33 when we were engaged. We got married and I remember having a conversation with my husband two months before our wedding about kids, and we knew that we wanted to have kids early on. Driving to get my wedding dress altered, I was talking to my husband on the phone and told him I was thinking maybe we should wait maybe three to six months after getting married before we start trying just because, you know, I didn't want to feel sick at the beginning of our marriage; I wanted us to be able to do things together. He responded with the question: What if we have problems getting pregnant? My immediate reaction was ‘why would you even say that’? That cannot even be in the realm of possibilities. The conversation is like a video recording right in front of me and three and a half years later, here we are.
In terms of my physical health that may have alerted me to potential infertility issues, I didn't really have any. At the beginning of University, I did have painful periods, but I thought that was normal. My family doctor at the time suspected that I had polycystic ovarian syndrome (PCOS) because of my painful periods, and she referred me to a gynecologist who also suspected I had PCOS. Their course of treatment was to put me on birth control. I'm trying to break the stigma, but in Middle Eastern culture, it is believed that you can't go on birth control because the whole notion of premarital sex in Islam is very taboo and not supposed to happen. So, a young Muslim woman would not need to be on birth control if she's not having sex. I ultimately went on birth control, but I would go on and off it for two or three months and then I'd be done with it. It made me gain weight. I was extremely nauseated. It gave me nightmares. And I was young, 19 or 20 years old, and thought I'd just take my painkillers and deal with the painful periods.”
WE’RE NOT PLAYING GAMES: TIME FOR A FERTILITY SPECIALIST
“My family doctor knew how badly we wanted children and being almost 34 years old when we married, I was not willing to wait 12 months before we started investigating. So, after four months of trying to conceive naturally, I told my family doctor, ‘We're not playing games right now…We want kids. Please, I'll be 35 next year. Just get me in.’ He was great about it and got me into a fertility specialist here in Canada.
In Canada, we have universal health care, and we don't have to pay for it, but the wait times are ridiculous sometimes. So, I had to wait about four months to get in to see my fertility doctor and we tried to conceive naturally for about eight months by the time I saw a fertility specialist. Then we started all the tests, and everything came back fine. I had unexplained infertility.”
“We're not playing games right now…We want kids. Please, I'll be 35 next year. Just get me in.”
I DON’T WANT SURGERY. LET’S TRY AN IUI
“In addition to my painful periods, I have always had a cyst on either of my ovaries and would always go for an ultrasound every six months to monitor the growth. They never got to a point where we should do surgery to remove them. Because I had painful periods and the cysts, my first fertility specialist thought maybe we should go in and check it out. I didn’t know anything. I was naïve and I just wanted to have a baby. I didn’t want surgery though and didn’t want to potentially have scar tissue or anything like that.
So, I asked what was plan B? And the answer was we could start with IUIs. Fortunately, here in Ontario, IUIs are funded by our government, and we don’t have to pay. The only thing we are responsible for is the sperm wash (approximately $300) and the Ovidrel trigger shot, which we can submit later through our benefits.
I had a couple of friends who had gone through infertility and advised me not to do the IUI. ‘They are useless. They are pointless. They are a waste of time. The success rate is only between eight and 15%. Don’t waste your time on that.’ But I wasn’t going to jump straight into IVF. Maybe I’m one of the lucky ones and I will be among the 15%.
On my birthday in 2019, we started monitoring for my very first IUI and a couple weeks later we did the insemination. It was a negative. We decided to try again. For the next cycle, I was on Letrozole for five days, triggered eventually, and everything was good. I ovulated on my own and they saw I had two mature follicles. They said there was a likelihood that if we conceived, we could have twins. The second IUI didn’t work.”
MOVING ON TO IVF: ROUND ONE
“We planned to start IVF in March 2020 but then of course COVID came, and the world shut down on March 13 or 14, 2020. It wasn’t until August 2020 that we had our first round of IVF, and the outcome was terrible for us. Based on preliminary tests, I knew I had a low ovarian reserve because I had a low level of anti-mullerian hormone (AMH). I didn’t know what that meant. [The Fertility Specialist] explained it to me that when going through IVF, I was not going to get a ton of eggs compared to someone potentially with PCOS or a high reserve. They would have tons of follicles compared to the four follicles they saw on my very first scan.
During this round of IVF, I went in for one of my scans and another doctor was in that day doing my transvaginal ultrasound. She told me that my right ovary was hard to get to and she said it was too high up. She asked if I had ever had surgery before (I hadn’t) or if anyone told me about it during my IUI (they had not). This was the first I was hearing of having a high ovary and she went on to say that it could mean I have endometriosis. She did not recommend we go forward with the retrieval because [my ovary] was too high and we might not be able to get to the ovary without going through the uterus, which she didn’t believe in. Are you kidding me? It was already over 10 days’ worth of injections, monitoring appointments, and just having our hopes up that we were going to get our baby with this cycle.
I went forward with the retrieval with my actual doctor, and he went through my uterus. He got five follicles, three of them were empty and I had two eggs. Of those two eggs, two embryos were created. We transferred one of the embryos and it did not implant, and the second embryo arrested before day five, before they could even freeze it.”
“I was diagnosed with stage three endometriosis. I had lesions all over my ovaries, over my rectum, my colon, and my bladder. It was just everywhere.”
DISCOVERING STAGE THREE ENDOMETRIOSIS
“I wanted to move on to round two right away and my doctor wanted to slow down and pump the brakes. He wanted to do surgery to see if I had endometriosis. My immediate reaction was No, No, No! It would take months for me to even get in for surgery, then I’d have to heal for a couple of months, and I don’t have time. At that point, I was a couple months shy of 36 but my doctor encouraged me to trust him and let him go in.
I trusted him. In retrospect, I’m glad I trusted him. After that surgery, I was diagnosed with stage three endometriosis. I had lesions all over my ovaries, over my rectum, my colon, and my bladder. It was just everywhere. He excised as much as he could and after surgery, we tried to conceive naturally for a few months to see what happened.”
WE WERE PREGNANT…BUT THEN WE MISCARRIED
“On our fourth try naturally, we became pregnant. We were so shocked. There was literally a zero percent chance in my mind. The day we found out, I was online teaching and by seven in the morning I texted my husband and told him I felt so nauseated. He said I should take a test and I refused. My period was a day late, but I had already promised myself months before that I wasn’t testing anymore. I wasn’t going to waste money on the test, and I wasn’t going to have that feeling of being hopeful just to be crushed when I saw a negative.
My husband got home, asked if I had tested, I had not, and continued to encourage me to test. He said we would go out for dinner, go to the beach and this and that. He said we would go regardless. I finally agreed to get him off my back and I tested. He was there with me. We had the camera rolling and the two lines were there. And it was one of the happiest moments of our lives. It was incredible.
We went through the whole beta process and my numbers were super high. I was worried that they were too high but at my appointment, everything was great. At our first scan, the ultrasound technician could see a gestational sac, a yolk sac, and a fetal pole. Everything was there. Everything looked good except it looked like I was a little behind. They weren’t worried and asked me to come back in a week to do another scan and check.
You could hear crickets on the drive home from that first scan. I was worried and we were both just so emotional about it. Fast forward a week and we went back for another scan when I was just shy of nine weeks. The ultrasound technician said she could see two sacs. But they didn’t have a heartbeat. You can imagine, right? And I remember my husband grabbed me, put his hand on my shoulder, you know, squeezing it. It was awful. I had to do a D&C a couple of days later. That was our first pregnancy.
My mom knew about the pregnancy, but we had not told anyone else in our families because we were planning on surprising them. In Islam, there are two holidays called Eid al-Fitr and on the second Eid, we were planning on telling everyone. Instead, we were telling them that we were pregnant, but we miscarried. And we had twins and they were identical. That was so hard.
“For me, it was tears. Tons of tears. More days than not, I was in bed. I couldn’t get out bed…I needed time away. I just wasn’t in a good spot.”
PICKING YOURSELF UP AFTER MISCARRIAGE
“I struggled. I really, really struggled. Thankfully, it was during the summer holidays. Had it been during the school year, I probably would have needed time away from work. Because, for me, it was tears. Tons of tears. More days than not, I was in bed. I couldn’t get out bed. My husband stayed with me for about a week. His workplace was gracious, and they gave him emergency time off, which was great. My mom would come over, our families would come over, people would send us meals and kind gestures, like flowers. But for me, I needed time away. I just wasn’t in a good spot.
The other thing that helped my healing was that we became pregnant again. My D&C was in July and in September, we learned we were pregnant. Again, we were shocked. I was 10 days post ovulation but decided to test and saw a super faint line. I thought there was no way but a few days later we went to test the beta and it was positive. I was pregnant again.
Those feelings of excitement came back but not did not erase everything that we had gone through with the first pregnancy. Even now, when we talk about our feelings there is just so much sadness that has been associated with our losses.
We were only pregnant with the second pregnancy for about five weeks. We weren’t far along and not to take away from the pregnancy, but it just didn’t feel as real as the first pregnancy. But, when we got the call about the second loss, that call was bad, too.”
After their first IVF cycle and surgery to remove the endometriosis, Rima and her husband decided to switch to a new clinic because they weren’t happy with the protocol for her second retrieval proposed by her original fertility specialist. It was suggested that she go on Lupron for six to eight months prior to egg retrieval. Lupron is typically used to reduce the amount of hormone released that stimulates ovulation to help control the ovulatory cycle and prevent premature ovulation. Rima reached out and consulted with other doctors and decided not to pursue the proposed plan and found a new fertility clinic and specialist nearby that has been fantastic.
STARTING OVER AT A NEW CLINIC
“When my new clinic did my preliminary scans, they saw a large cyst on my ovary again, even though my previous fertility specialist had drained the cyst last year. My new doctor thought they shouldn’t have drained the cyst but should have removed it. He now wanted to go in and excise the cyst, relocate my ovary and then clear any endometriosis that he could see. It is very rare to have a laparoscopy and go in twice in less than five years and I would have two in nine months. But they could not move forward with IVF with the five-centimeter cyst on my ovary.”
The second procedure was done in October 2021.
“During the second procedure, the doctor saw endometriosis everywhere again and he removed all that he could find. The cyst was on my fallopian tube, not my ovaries and it was twisting my fallopian tube. Thankfully, he got rid of that and I’m now healing and hoping to start IVF either in January or February 2022.
My new fertility specialist is phenomenal. He’s very patient oriented and listens to his patients. When you ask a question, he gives you an answer that is always backed up with a study. Given my age and given that my two losses were back-to-back, my new doctor was supportive to get additional testing done. We did a bunch of bloodwork, we did thrombophilia testing and both came back fine, and we have done karyotype testing, which we still haven’t gotten results for yet.
My doctor also suggested Fertilisis for extensive testing. It’s a company in Greece that is pricey, but it’s so comprehensive and it gives so much insight into what might be impeding females’ and males’ success, whether it be conceiving or maintaining a pregnancy. It’s a three-step process where we do a vaginal swab right around ovulation, collect some of my menstrual blood and freeze that, and then vials of blood for my husband and myself for reproductive immunology testing. We will take the results to my fertility specialist and will establish a plan.”
“My main goal is to be out there, to help, and to empower. Empower all women who are going through this.”
SUPPORTING MINORITY WOMEN WITH INFERTILITY
“I’d say that 90% of my direct messages are from Muslim women all around the world that tell me they thought they were the only one. They thank me for putting my story out there and say how nice it is to see someone that looks like them, or speaks the same language as them, or has the same belief system as them sharing their infertility. They always thank me and comment on how hard it must be. And it is hard. When I first created my Instagram account, I was anonymous for months. I just needed it as a support tool during IVF and I just wanted to connect with other women.
Then, about a year ago is when I put myself out there, put my image out there with a hijab and I was so scared. I didn’t know how people would receive me or if I was going to lose friends online because they didn’t know I was a minority, or they didn’t know that I was a Muslim. I had that fear. And in retrospect, I hate that I had that fear. Who cares if I lose them? If they don’t respect me for who I am, I don’t want them in my life.
I find that the majority of women who start following me are minorities and are women of color, whether it be Middle Eastern, Black, Asian. And I question why sometimes, to be honest. I don’t know if they find me more relatable or if I represent something or someone to them that they don’t see online quite often. Maybe people feel more comfortable with people that they can relate to.
I’m never looking for pity from anyone but I’m looking for support. And I’m looking to support others. My main goal is to be out there, to help, and to empower. Empower all women who are going through this.
I’m a teacher and I want to help people and serve people. If I can help someone get answers, just lighten their load or lighten their day, give them someone to talk to that understands what they’re going through…that is the reward in and of itself for me. I don’t want anyone to feel alone. And I don’t want to feel alone. We’re feeding off each other and, in a sense, we are also trying to uplift one another.”
FOR THOSE WOMEN WALKING THE INFERTILITY PATH:
“I would first say advocate, advocate, advocate for yourself. If something does not feel right, if you don’t feel like you are being listened to, if you don’t feel like you are being heard or taken seriously, go elsewhere. Do your research. That is so important.
My second piece of advice is to find your community, even if your community means one person. Find someone that you can connect with who will hold your hand through the highs and lows, and who’s hand you are willing to hold through their highs and lows. Because community is everything. I have met phenomenal women all over the world in this last year, people that I can imagine myself talking to into my older years that are just phenomenal. They have kept me above water on my darkest days and celebrated with me when I was on cloud nine.”
You can continue to follow Rima’s journey and her continued support of others battling infertility on Instagram @patience.is.a.virtue.ttc