***WARNING – this post may be triggering to some***
I never thought this would be my life.
I never thought words like infertile, barren, sterile, IVF or failure would form part of my vocabulary when describing myself.
I have been wanting to write this blog for the longest time, but have never had the courage to put into words the journey that we have been on. And then another Mother’s Day passes us by, and I lie crumpled on the floor as I hide away from social media and all the messages. I try to put a smile on my face as yet another person asks if we have kids, and try not to fall into despair as yet another Facebook invite comes through for a baby shop. I slowly inch my toe out to test the waters with regard to opening up about infertility, and the flood of messages from other women who are going through similar grievances causes my phone to “ping” for hours.
“The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?”
― Spoken from the Heart
In 2004 I was diagnosed with a rare disease called Myasthenia Gravis. This disrupts the message between my nerves and muscles, causing extreme weakness and exhaustion. I have been on chronic medication since day one of my diagnosis, and the side effects of these years of medication caused havoc with my fertility.
I married my wonderful husband in October 2012. From the moment we met, we both said just how much we wanted children. We are both very family orientated & knew we wanted mini-me‘s as soon as we were married.
I went off the pill as soon as we said “I do”, & we gave ourselves 6 months to try. Nothing happened, but we weren’t too concerned as we weren’t tracking my ovulation or anything – we were just enjoying being married & doing the baby-dance.
After a year of still no sign of falling pregnant, we decided to visit my gynae. She did scans & a few tests but still wasn’t overly concerned as we were both relatively young & still had time on our side. She did do some blood tests that showed I had very few eggs left, that are of a very poor quality. This was probably due to the fact that I was on chemotherapy -like tablets for 8 years for my disease, but we can’t be sure. It could also be from my septicemia I developed after a botched up operation in 2011.
***Note: fertility treatments are not covered by medical aid***
Before deciding to visit a fertility specialist, I decided to try the natural route. Once a week I would go for acupuncture & got given Chinese & homeopathic medicine to take on a daily basis. This made me feel a lot better & regulated my periods, but still didn’t help me fall pregnant.
We went back to my gynae for another full check-up. I had bad ovarian cysts (I have had about 8 operations now to remove cysts – one of which was 10cm big), as well as endometriosis which had taken over. My blood tests showed further deterioration of my eggs & she advised our best option was to go to a fertility specialist & see if we need to try IUI or go straight for IVF. I had to have an operation to remove endometriosis & ovarian cysts, & while she was in there she discovered my right ovary & tube were completely destroyed & these had to be removed as well.
We decided to be open with the journey that we were on, as it was always so difficult when people asked us when we were going to have kids, or why we didn’t have kids yet. It certainly helped to have everyone’s support throughout everything, & it also stopped all the unnecessary questions at braai’s or family gatherings. However, I also understand why people choose to keep this part of their lives quiet as it can be so difficult to openly discuss your latest hoo-hah appointment, or when your next period will start – and even more difficult to let everyone know when it didn’t work.
When we went to see the fertility specialist, he told us pretty much exactly what my gynae had said. Our only option was IVF & we didn’t have time to play around. The quality & quantity of my eggs was very concerning to him, as well as the rate at which I seemed to get ovarian cysts & endometriosis. He said if we waited for a couple of years I may not be able to have children, unless we got a donor egg (and maybe even a surrogate). I immediately went off a certain medication for my chronic illness that would make me a lot stronger, but causes major birth defects. He advised IVF would cost upwards of R65,000 due to the high doses of hormones I would need to be on, & they may need to do ICSI (where they inject the sperm directly into the egg) as well which would be an additional cost – even though there is nothing wrong with my husband’s sperm! (Note here: they were called Olympic Swimmers! In the infertility world, this is a HUGE win.)
We weren’t overly impressed with the bedside manner of this fertility specialist, & although I was getting sick of all the different people having to scan & test me, we decided to take one more chance with a new specialist. A family member had told us about Universitas Hospital in Bloemfontein where they had managed to fall pregnant & we decided to make the 12-hour round trip to Bloem to see if they had any further answers for us.
What a worthwhile journey! The doctors & nurses welcomed us with open arms, listened to us carefully & answered all our questions honestly. They held a conference amongst the doctors at the hospital to discuss our options with my Myasthenia Gravis & infertility issues, & then called us back in to discuss everything with us.
IVF was our only option due to time constraints & my health. We were very blessed as friends & family really rallied around us & helped with donations & fund-raising to help us reach our target to have IVF done; & we began the whole process in October 2015 (after having a HyCoSy to see if my remaining tube was open, or if another operation was needed – this was possibly the worst pain I had experienced up until this time, and Warren actually fainted seeing me in that much pain).
What followed was weeks of daily injections (up to 4 a day), tablet swallowing, more trips to Bloem, scans & emotional stress. Eventually we got to the point where the doctors were happy with the size & number of my eggs on my ovary (we had 7!) & the following day I had my trigger shot. We then went back to Bloem to have the egg retrieval done. This wasn’t as bad as what I thought, although I saw the size of the needle before closing my eyes & that freaked me out a little!
3 days later we were told to go back to the hospital to have the embryo transfer done. Depending on the growth of the embryos, they will do this transfer between day 3 & day 5. It is preferable to do it on day 5 as then they are healthier & stronger, but mine weren’t growing quite as they hoped & they thought it better to transfer them into the safety of my womb sooner rather than later.
We had 3 little embybabies & we decided to have all 3 transferred as they weren’t particularly strong & we didn’t want to lose a chance of falling pregnant this time.
The 2ww was dreadful! Every day I wondered if my sore boobs were as a result of actually being pregnant, or the progesterone supplements I was having to use. Eventually we got to D-day & I did a pregnancy test at home before going in for my blood test. It was positive! I tried not to get my hopes up too high, as we had been told the medication could give a false positive on a urine test.
Luckily for us the blood test showed elevated Hcg levels – I was actually pregnant! We were completely over-the-moon & couldn’t resist telling everyone we knew that the IVF had worked & that I was pregnant. Maybe we were a little premature with telling people this, but everyone knew the journey we were on & had been such a support system for us from day one.
Our first scan showed the sac with a little yolk – one little embryo had stuck around & taken up residence in my womb. We started buying baby things & my mum blessed us with a cot. We were actually going to be parents & we couldn’t feel more lucky! I bought all the pregnancy & baby magazines possible & read up every day to check the growth of our baby. We chose names we both liked & started choosing ideas on how we would decorate the nursery.
At our next scan (on my husband’s birthday), we were given some devastating news. The sac was empty. Our baby hadn’t grown & was no longer visible. He did both an internal & external scan; & unfortunately there was nothing there. He told us to go home & wait for a while to see if I miscarried naturally, or would need to go for a d&c in a week or so. Telling our friends & family was terrible. I still cry just thinking about it. Some people had no idea what to say, & have avoided us completely since then. Others sent messages almost every day asking how we are & just letting us know they are here for us & are praying.
The first Wednesday, 06 January, of 2016 I woke up to go get something to drink, & as I got to the kitchen, I could feel blood pouring down my legs. I had miscarried. I had lost our little bean that we had been wishing & praying for. I screamed for my husband who put me into the shower & cleaned everything up. We phoned my gynae who advised us to go to the hospital. I was admitted straight away & tests etc were done to confirm there was no more baby. I was taken into theatre at midday to have a d&c, whereafter I was admitted into High Care due to excessive blood loss & my Myasthenia Gravis. My gynae was amazing & so comforting throughout this experience. She cried with us, loved us & told us to never lose hope.
I know this has been long, but I ask you to stay with me for a little while more…
“I became the person people don’t want to tell they’re pregnant. I hate that. A friend told me her happy, fantastic news, and just a second later she burst out crying, afraid for how this would make me feel. I hate that. I work really hard to arrange my face in such a way that approximates uncomplicated glee. And I am happy for them, or course. But sometimes just after the happiness is the desperation. Some days are easier than others.”
― Bread and Wine: A Love Letter to Life Around the Table with Recipes
We tried one more round of IVF.
I had to have more medication, and we became pro’s at injecting my stomach wherever we were – in fact we sometimes had to pull over on the side of the road for husband to inject me. Those suckers burnt, but they had to be done at precise times of the day. We took every precaution possible, and decided to keep this round quiet – except for telling our immediate family.
The retrieval went well, and the transfer even better. The doctors were feeling positive about the quality of my eggs, and we were sure this was it.
The eggs didn’t implant.
I wasn’t pregnant.
I was broken, and this nearly destroyed our marriage due to all the stress and emotions we were trying to work through as individuals, never mind as a couple.
We didn’t lose hope, and still thought that one day we would get our miracle.
And then, my stem cell transplant happened. We were warned that the drugs would do crazy things to my body, and we weren’t really sure of what exactly could happen besides the loss of hair.
And then, we had to wrap our heads around the reality that I was now in early menopause. There would be no more chances at having children. My body had officially given up. Guys, I was just over 30 and I was in the thick of menopause – the sweats, the emotional rollercoaster, the lack of periods, the feeling of officially being a failure.
So, now you may be asking what this all means for us.
South Africa has made their adoption laws super strict, and the use of a surrogate requires a High Court interdict to prove that the mother cannot carry the baby herself. There is no easy way through this.
We are forever grateful for our friends and family who have granted us the honour of being godparents and adoptive aunty/uncle, and we love our fur-children with all our hearts. But deep down I will always feel like I have failed as a woman; failed as a wife; failed as a mother; simply FAILED.
Infertility is awful.
“On a planet where for thousands of years, even today, a woman’s worth has been judged exclusively by the productivity of her womb, what the hell is the point of a barren woman?”
If you are going through this currently – I am so f*cking sorry. It sucks balls. There is no pleasant/lady-like way to say it. Cry, scream, laugh, celebrate, mourn – every day is an unknown. And every emotion will be experienced – raw.
And if you have made it all the way to the end of this blog, thank you for taking the time to read my story. Thank you for learning about our baby bean, and for allowing me to remember him/her with all the love in the world.
We miss you. We mourn you. We will never forget you,
Mum & Dad xxx