MS - The Elephant in the Womb

Room in my Womb

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As a very young woman, when less educated on the subject of pregnancy, I would almost joke that I had ‘no room in my womb’. Now I do have room, but trying for a baby is out of my control. I almost want to say, ‘bloody typical’ followed by, ‘*breathe*, its only temporary’.

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The ‘elephant’ symbolises the impact a relapse and DMT’s have had on me. The impact of being able to do this perfectly natural thing, starting a family but not being able to (*fingerscrossed* only for now). The impact is about the time that needs to be given to when and how to prepare to start a family. Not to mention finally being ready to start a family and then not being able to. What a bummer eh?!

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I can appreciate it might seem you’re embarking on a somber story, but the end is filled with gratitude and hopefulness :)

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There’s information out there on pregnancy in MS, labour and postpartum with regard to possible relapse, but I personally haven’t seen much out there on the journey leading up to pregnancy. I wanted to open up that conversation, an opportunity for further reflection. Other women must have experienced the same dilemma of how to approach pregnancy. I read that MS is more prevalent in women of childbearing age so how can it not be something that’s on our minds. It affects so many of us.

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I always find reading personal journeys more wholesome than professional summarises alone of what to expect or possibly prepare for.

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Disclaimer: Pregnancy can be a sensitive subject and I am mindful of that. I can only reflect on my personal experiences, thoughts and emotions all of which are my own. I am not generalising any of my experiences to others, but I do wonder whether there are some women, maybe men to that can relate.

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10 years earlier – MS & the priority then

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My priorities had always been work and travel. I was diagnosed with MS almost 10 years ago. I was 23.

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I’d been living in Chester since I was 18, leaving home in Darwen, Lancashire for university. Daunting but I was so excited to start a new chapter. I studied, made new friends, embarked on new relationships and enjoyed having the freedom that comes with moving away from home. Fun and almost carefree to start. I moved into the world of work at 21 as a Mental Health Nurse and what a shift that was!

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Fast forward to life at 23, I’d had a small relapse the year before which they queried was MS but the diagnosis came the year after. My priorities remained the same, work and travel but with more thoughtfulness for my health. The concerns for my health then centred around mobility and what my future would look like. I could go on and on about the diagnosis, symptoms, relapses, treatments – DMT’s since then but this blog starts now, now that the priority is pregnancy.

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The priority now - children

I’m still living in Chester. I worked as a MH Nurse in inpatient settings with 12-18 year olds for 8yrs. Moved into the community to pursue work goals, but also to adapt my lifestyle to MS. I’ve been working as a therapist since.

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I’ve been living with my partner Sean for almost 9yrs, together almost 10. And now, there is space for another person in our lives, but I cannot make this the priority. Another MS relapse and a new DMT wins. This came with feelings of sadness, tears to and hopelessness.

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Societal pressures and our own

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Aren’t women hardwired to want a baby? No, not all women but certainly some. I’d like a baby and I’ve become more certain of this in the last 2 years. It happened when I started approaching 30. That’s probably not a coincidence when us ladies hear so much about our ‘body clock ticking’. Society starts to tell you that time is of the essence, and for some the panic sets in. Not only for us ladies, but for men too. I know I was asking Sean to be aware of X, Y & Z to take care of himself.

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I recognised having a baby was taking up more thinking time. It was a conversation I started to have with Sean and when he was ready, him with me. We continued to prioritise work and travel, amongst other adventures but every now and then, the baby conversation would come up. At 30, 31 and from January 2023 onwards when I turned 32. Even without the added consideration given to MS in pregnancy, I was aware I wasn’t getting any younger, nor was Sean, who was 37. You hear about the risks of conceiving at 35+ and again, 40+ (though lots of women challenge those statistics!). But honestly, I did consider those statistics and I’m certain others have too. And then, there’s MS.

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The women in your life reassure you that ‘you’ve plenty of time’, ‘don’t worry’, ‘do it when it feels right for you’ etc. Then society says, ‘come on, your body clocks ticking, you’re not getting any younger’. Then there’s MS and the possibility you’re restricted regardless, even if only temporarily.

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In addition to all those women that go through a multitude of fertility issue with and without MS.

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One thing that sticks with me is when someone said to me “just be pregnant all the time” insinuating I’d be well. I’ve read some research to suggest that pregnancy dampens the nervous system, keeping pregnant MSers well. Maybe that is the case, I haven’t been pregnant to know, BUT how do you know I’m not experiencing difficulties with fertility like any other woman might. Or this situation of mine. People ask if you’re trying, or when you going to have a baby… if only it was that simple. This highlights another example of being careful what we say.

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The Dilemma & DMTs

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I had Covid in 2021 for the first time and it sent my body west. In hindsight, my health had been deteriorating since then, faced with many challenges but mostly in the way of mobility. Life continued.

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In August 2023 I’m faced with another relapse, one of my more serious relapses. The MRI showed new brain legions. Of course, I’m upset. Sean and I had a cuddle, and we had an appointment the following day to discuss the options. We sit there together, in front of the same nurse that has been seeing me for 10yrs and she strongly advocates DMT’s. The neurologist too. The MS is active, and it sounds it has been for some time, maybe since the Covid relapse in 2021. It’s too long to summarise in this blog but I had been on DMT’s between 2014-2019-2020 – subcutaneous and IM injections (Rebif & Avonex). I had some site reactions during a fairly stable period, so we agreed (MS Team) to take a break from DMT’s. If I’d known the impact of having Covid, I might have stayed on them.

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Now I was faced with an infusion, Ocrevus or subcut injection, Kesimpta.

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We always have a choice, but this felt different, it wasn’t being sold to me as an option more a necessity to stabilise the MS. I understood but I felt upset, frustrated, angry, uncertain and lacking in some control over my life choices.

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The crux

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“Okay, but what about children?”. Neither of these treatments are licensed in conception or pregnancy. I sat there picking my chosen treatment whilst being told children needed to wait. I knew with hindsight that physically I wasn’t well enough to have a baby, but jeez it was frustrating to be told to wait. We were finally ready to welcome someone else into our family. The impact current symptoms were having on me, I knew I’d have less independence to leave the house to walk a baby for example. I felt sad and so did Sean.

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There was nothing we could do except wait. Rest, allow time to recover, wait to start Kesimpta (it arrives on the 08/12, finally!) and give it time. I’m certain lots of women have been here and it’s tough.

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Next question, how much time? 6 months to a year. The panic of societies pressures setting back in. They were asking we wait for the MS to stabilise, but I’d be 33 and Sean, 37. “We’re leaving it too late!”. We were told not to worry, we had time. That might be so, but I couldn’t help but think ‘what if we have difficulties with fertility and we’re leaving it too late to find out’. I have to be honest about that initial panic. I know I’m not the only woman worrying about fertility, all having our own circumstances. This sounds like despair and at the time I think it did feel that way, but we were given lots of assurances we’d be okay from professionals and friends.

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It had also crossed my mind about inheriting MS. I probably considered this earlier on when children were more of a passing thought. I did read that MS is not directly inherited and for every 1000 who have MS, 15 will get MS. I found that pretty comforting.  

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Anyway, we went on our way with a prescription (metaphorically) for new meds.

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Contraception – hello old-ish friend

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I agree to Kesimpta and find myself thinking about contraception again. I’d enjoyed the break from it after being on the pill since I was 15 (approx. 16yrs!). There’s so much information out there now about the impact of contraception long term (maybe not for everyone). I’d come off in March 22, wanting to allow time for it to leave my body and then think about trying for a baby. As well as the positive impact of allowing my body a break from the pill. I suppose it’s daunting, also exciting to take those next steps in deciding to come off for the sole reason of starting a family. Then you find yourself back on it to prevent that from happening.

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I wasn’t keen on trying another form of contraception like the coil or implant, hopeful I’ll be able to stop in 6-12 months and try again. Optimistic? I don’t know. Sean thinks closer to 12 months but let's see. I want to remain hopeful. It’s thinking about when the time to stop is, if advised and appropriate.

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Almost 1 month of taking you again…

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Baby chitchat

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I found myself quite sensitive to baby talk for a few weeks, maybe even months. Never had I experienced this before. I felt sadness and honestly, a bit frustrated (more honesty… maybe even a bit angry) when people would speak to me about trying for a baby. I felt I had no right to feel that way toward others; my friends especially, and thankfully it did subside. I just felt sad that the control and want to try had been taking away from Sean and me. Of course, I was happy for others! I was just surprised by how upset I felt. I think the lack of control played a big part. It could have taken months, even years to try for a baby but all of a sudden, I wouldn’t know because I had to start treatment again. Treatment was and is the sensible option, it just felt upsetting that was the reality again.

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‘The elephant’

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At 23, pregnancy crossed my mind, mostly contemplating mobility. 10yrs on, it’s so much more than that. There is quite a lot to think about before you even get started on family planning. Mobility for me had been one fear, but being faced with active MS again, the relapses and re-starting DMT’s was the reality again. I’d had a worsening of symptoms and new symptoms since 2021 but remained off treatment. Treatment had not been pushed in this time either.

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There are certainly some benefits to planning a pregnancy. It’s not all bad. It’s just required more thought than I’d initially expected.  I know Sean hoped it would be more spontaneous thinking back to a few years ago, but we came to learn it would be more rigid than that. Requiring more conversations and more preparation. We had to think about what the priority was. We had to listen to my body and the team. We were even more thoughtful about the decisions we were making for ourselves. It made us more patient. We had to be.

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I found myself wondering if there is any support out there for women with MS, embarking on starting a family who might be faced with this waiting game. Fertility has a huge impact on all woman, their parters too. Then there is the added complexity of physical and/or mental health difficulties, MS being only one. Whose thinking with us about the impact of the journey to get to pregnancy? It can be a difficult road for some.

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Time to Pause with Hope & Gratitude

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I’ve not had the pleasure of being pregnant and already I’m thinking about what it’ll be like, the pregnancy, labour, postpartum, breastfeeding. All of it but with MS and DMT’s included! I then remind myself to slow down. It’s lovely (and scary) to think what the future could look like, and I don’t plan to stop looking ahead. But right now, I need to concentrate on getting well, feeling stronger and stabilising the MS.

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Working in mental health for 14yrs has no doubt strengthened my ability to cope, build resilience and extend compassion to others, but also myself. I think I’ve always been a realist/optimist as opposed to erring on the side of pessimist. This has stead me well but that diagnosis of MS 10yrs earlier changed me. Surely any diagnosis does. I can appreciate the changeable mood that comes with that, bouts of low mood for some. I’m not going on to say I maintain a positive attitude 100% of the time since diagnosis. Every day comes with its own challenges, but it certainly has made me more mindful. I like to see the joy in little things, demonstrating gratitude for what I have, what I can still do and what is going well for me and the family etc. I’m more hopeful. Hopeful for the day ahead and what’s to come. If it’s a challenging day, that’s ok but I like to focus on the positives, what’s going well, what I can change and so on.

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I acknowledge the MS, facing the challenges I’m met with but where possible I do not let MS define or dictate my life. That includes having a family.

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Today I’m grateful for a delivery of Kesimpta tomorrow and getting started on treatment. I hear it has good outcomes and I’m hopeful it will stabilise the MS, help quicken my recovery and get me back on track.

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Till then, I patiently wait.

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If I’m blessed to fall pregnant in the near future, who knows maybe this blog will evolve from MS in pre pregnancy to pregnancy.

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If anyone wants to reach out, has any reflections and/or questions, I’m on Insta: staceycain91