MS and Fertility: Conflicts of the Heart and Mind
“Rock bottom is the end of what wasn’t true enough. Begin again and build something Truer.” — Glennon Doyle
The first of our four pregnancy losses were our twin daughters in 2013, which happened nearly halfway through my pregnancy. Three years later, the first symptoms appeared that would eventually would be diagnosed as relapsing-remitting multiple sclerosis.
After my diagnosis, time simply stopped. Our lives were put on hold, and this included starting a family. As it turned out, this was just the beginning of our long battle with MS and fertility.
The effects of relapsing-remitting MS, which I refer to in my columns as “Hurricane MS” due to the damage it has caused, complicated fertility matters for me. I have had to agonize over questions like, “Does my ability to have children necessarily mean I should?” And, “Is having children worth the potential consequences it might have on my physical and mental health?”
After much time and reflection, my husband and I are ready to have children. We have two options: in vitro fertilization (IVF) or adoption.
After several years of trying to conceive, and then having painful tests, we were finally referred to a fertility clinic, where we were offered a single round of IVF through the U.K.’s National Health Service. If this is unsuccessful, adoption would be the next option.
Currently, my head is leaning toward adoption, which I believe would be the best option for my health. However, my heart isn’t yet ready to give up on carrying the baby I’ve wished for ever since I can remember.
I was also diagnosed with polycystic ovary syndrome, which causes fluctuations in my hormone levels, and unpredictable, painful, and heavy periods. This condition affects my fertility. I take medication to manage it, although most of the time, it feels like putting a Band-Aid on a bullet wound.
I also must consider the heart-rending reality that there is a long waiting list — perhaps over a year — to receive IVF. And after the wait, there is still only about a 32% chance the procedure will be successful for women my age. Again, I only have one shot for this to work, and my scientific mind doesn’t like those odds.
My heart, however, disagrees. I have hope and faith in my heart that it will work.
If I were to become pregnant, I would face an increased risk of an MS relapse after giving birth. I also would have to stop taking my fatigue medication, modafinil. While I have previously written about the effect fatigue has on my life, I would do anything for a baby, including living with increased fatigue for a while.
Most of the time these days, my head tells me I’ve matured enough to prioritize my health over a longing to feel a child kicking inside of me, as I once did with my girls. But I still feel the pull of the songbird in my heart that’s been singing since my body’s clock began ticking as a teenager.
This is now our ongoing battle, after I clawed my way back from the ashes left by my “Hurricane MS.” We don’t yet have the answers, but I have no doubt this warrioress of MS will find a way to rise again.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Leanne Brougton
Best of luck with your IVF.
Margo de Jager
Dearest Beth, I am sorry to hear about your struggles,
I also have MS and it was diagnosed late in mid thirties, after my first pregnancy/miscarriage.
Miracles do happen, and today I am the birth mother of 2 and both pregnancies was good for my MS.. and I had no relapses after my cesareans. My biggest dream was to breast feed... and I was suppressing any and all stress to be able to realize that dream. Best wishes for your fertility dreams... never stop believing in miracles!
xxx
Beth Ullah
Thank you so so much for sharing. As practical as I am trying to be, there's something intrinsic constantly running through me. It's so difficult.
Wendy Hovey
Thank for for your searing honesty. Any child will be lucky to call you Mom.
Beth Ullah
Thank you so much for your candid response to my column. I'm going to bed with a hug smile on my face reading this. Thank you so much.
Beth Ullah
That was 'huge' smile... And just to clarify, I'm in the UK and it's bedtime here :)
Esther Barth
I understand completely what you are going through. I can share with you from my own experience with the hope that it will be of some help. I too had had intractable fatigue with my MS and couldn’t conceive a child on my own. So I did in Vitro fertilization. I lost the first pregnancy at 13 weeks. But I tried again and the second time I was on so many hormones to keep the pregnancy but in the end I can tell you it was worth it. My daughter is 27 years old and my son is 23 years old they are both fabulous. I then was able to have a second child ( a son, after multiple tries) I didn’t have a good partner to go through any of it with me or with my MS so if you have any support in your life you should not be afraid to enjoy your life.
I had to do everything on my own as well as work full time. Doing it all probably made my the total damage from my MS worse but I wouldn’t change what I did ( except get rid of my husband sooner).
My children are the greatest love I will ever know. They have brought me more satisfaction than my career ever could have. I’ve had MS now for 29 years and I’m still here as fatigued as ever but loving life.
Beth Ullah
Thank you.
It's such a difficult decision.
We'll get there, we'll make it. There's no other way is there?!
I am so glad it worked out for you.
Yvonne Wehr
DO NOT LOSE HOPE! I too have MS. I knew that it was the problem even BEFORE I was officially diagnosed. I had gone through every bit of info regarding problems which might prevent pregnancy. Finally somebody referred me to OHSU (Oregon Health Services) which is an excellent place to get info about MS. I found a doc up there that I liked and trusted from the first meeting with her. Long story short...My first born, a girl, was born! We just celebrated her 47th birthday. And our and our son, who was a complete surprise, celebrated his 42 recently! He has two children. What a happy family we are! Hope you go to a University Medical unit near you. You might be happily surprised!! Best wishes for you and your husband!
Beth Ullah
Thank you for your comment!
I am so glad to hear of your success! Thank you for sharing :)
Robert Biccum
As a male, I have had MS for the past 34+ years. Mine too, started out as Relapsing / Remitting, then about 6 years ago, transitioned into Secondary Progressive. My 2 children, first a boy, born 1979 by my first wife, then a girl, born in 1991 by my second wife. All participants appear to be fine, relatively speaking, but I am certain that the presence of MS in all our lives caused untold damage over the years. Stress, fatigue, marital, and accompanying financial pressures on the bread-winners of the relationships can all factor into the equation. Looking back over all those years, I shudder to think of what potential 'pot-holes' could be lying ahead for this couple. I hope she and her husband both think long, and hard before making such life-altering decisions.
Beth Ullah
Hi Robert, thank you for your comment. This is exactly the kind of response that I am glad my column has elicited.
I assure you we have discussed at length for years. Being a scientist and overthinker, we have looked at it from all angles. I haven't referred to the genetic concern in this column specifically because we don't personally consider the genetic risk to be of concern for us, with treatments and current disease management. I will highlight that is our own personal decison. I was unlucky with an aggressive onset at 26. I have been councelled about family planning as a person living with MS, not even 3 years prior, the advice in the UK was to avoid pregnancy if at all possible. When I was diagnosed, the advice had just changed, that genetically the risk wasn't as significant as before with the advances in treatment and management.
Fertility and family planning is one of many obstilcles that we face as people living with MS. We can't assault them all, we need to decide which ones we face I believe.