The concept of conceiving with lupus by Maryann

The concept of conceiving with lupus by Maryann

It’s impossible to ignore that spring has sprung. Seedlings on window sills, blossom on trees. New life is everywhere.

As I celebrate Easter, and watch kids collect chocolate eggs representing the unhatched chicks of the season, I wonder when it will be my turn. I’m no “Spring Chicken” and I have a chronic illness, my dreams of being in bloom, and hatching some chicks of my own seem to be left hibernating in winter.

The effects of lupus on my fertility was my foremost worry when I received my diagnosis. DLE and SLE had just been confirmed, but all I wanted to know was if this would rob me of my desire to carry and bear a child. “Do you have any questions?” the Dermatologist asked encouragingly. “Will I still be able to have children?”.  Her reply sent my throat on a bungee to my stomach, “I suggest you try to freeze your eggs”.

I spent the next few days down a lupus and fertility rabbit hole, and what I found reassured me it was still possible to become pregnant and carry a baby to term, but it would be considered high risk. Research showed that lupus does not cause infertility, but conditions linked to the disease such as having antiphospholipid antibodies can increase risks of clotting and cause miscarriages. The risk was in carrying the pregnancy to term, not the conception. I still wanted to try having my eggs frozen as an insurance policy and spoke to my GP about a referral. It took almost a year before I was seen by a fertility specialist at Guys and St Thomas’s Hospital.  Whilst waiting for the referral, I had an ultrasound to rule out fibroids or endometriosis and was ecstatic when told that I was free of obstructions. However, within that year, the lupus became more active, I had more symptoms, a carotid body tumour was discovered and removed from my neck and my menstrual cycle basically stopped.

The specialist was amazing, so empathic and thorough.  She explained the processes and costs that would be incurred.  Fertility testing on the NHS was free, as long as you were under 40,  but it was down to local Councils to decide whether to cover the cost of the initial egg harvesting – and mine didn’t, so I would have to pay for the harvesting and storing myself. She ran a number of tests and ultrasounds and confirmed that I still had eggs to freeze.

The egg harvesting process begins with you being given hormones before you ovulate to stimulate multiple egg release.  The eggs are then collected and frozen. After months of testing I was heartbroken, to find out that due to the irregularity of my cycle, the specialist could not pinpoint my date of ovulation and therefore could not continue with the process.  She explained that the lupus activity was affecting my cycle and that when the lupus was under control and my cycle was back to normal I could try again.  But when would that be?   No one had any idea.  I was 8 months away from my 40th birthday when she told me they wouldn’t be able to help. I was so disheartened. No cycle – no babies, even if I tried naturally.

My rheumatologist was less supportive while this was going on. He felt that I shouldn’t have even been considering my fertility while my disease activity was so high. When I questioned the effects of medications on fertility and explained that I didn’t want to start on certain drugs until my eggs were frozen, he told me I was “ridiculous”.

I was prescribed Methotrexate to control my condition, a drug which can cause harm during pregnancy.  I was told that I must not get pregnant and that it would have to be out of my system for 6 months before I could try for a baby. If I wanted to get pregnant I would have to consult the rheumatologist, be put on an alternative, and possibly less effective medication, and then wait 6 months for the Methotrexate to leave my system before trying.

It took almost 2 years for my periods to come back. When they returned, I realised that I flare in line with my cycle and my hormones. They’re only minor flares but I’ve been warned that if I take fertility drugs, which being over 40  is likely, it may increase the disease activity, potentially putting my organs at risk. Streams of literature reassures lupus warriors that fertility isn’t affected by lupus, but for me the concept of conceiving is extremely complex.

Each person’s experience with fertility is different and my story isn’t an indicator of what it will be like for others trying to conceive with a lupus diagnosis. I personally know a few strong warriors who’ve had successful pregnancies and their children are strong and healthy. I look at these women and I have hope. If it’s meant to be it will be, and as I type, I get to raise and enjoy the crazy amazingness of kids as a Foster Carer – what a privilege.


Additional reading:

Lupus and Pregnancy

Lupus: A Guide to Pregnancy

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