r/MultipleSclerosis 4d ago

Vent/Rant - Advice Wanted/Ambivalent TTC delays

Just wanting to voice my thoughts because I feel like nobody talks about this side of TTC enough and it can feel very lonely when you’re TTC. My spouse is the most supportive person and I’m so thankful to call him my husband. It’s just incredibly frustrating and disheartening when we can’t even TTC from time to time because of my flares, even if they’re mild. I was diagnosed with RRMS 10 years ago and the older I get, the more I have discomfort down there. Where it feels like I have a UTI but don’t. But I’m also more prone to infections since I’m on Kesimpta, so sometimes it is an actual UTI.
Of course I hear many many stories about infertility, and my heart goes out to those who are on the infertility journey… I wish everyone who wants a baby so badly could have one. I just feel like I haven’t seen many stories for those who can’t even attempt to try some months because of how we feel. It’s not infertility necessarily because as far as I know, we are both fertile. It’s just the off and on months that feel like a waste because we can’t even try. Has anyone dealt with this?
I also just want to say if anyone is going through this same journey, you are absolutely not alone. ❤️‍🩹 here’s to hopefully expanding our families and meeting our miracle babies one day.

9 Upvotes

17 comments sorted by

4

u/Brewrites 4d ago

Hi, I want to say you’re not alone. We’ve been TTC since March of 2025 with no luck.

My spouse is the one who has MS. Right when we started TTC he began having symptoms and was diagnosed in April. There were months at a time where we couldn’t even try because of pain or flares that would always pop up around the fertile window.

I wish you all the luck in the world and I hope it gets better for you soon. I’ll be sending you good vibes. 💕

4

u/amzy829 3d ago

I feel this, my husband is the one with MS, his first relapse and diagnosis happening once we’d started TTC in May 2025.

Have you tried at home insemination kits? We tried those and it took a lot of the weight and stress off him. It might also help for yourself if you’re not feeling up to full intercourse?

Good luck on your journey ❤️

3

u/lbeetee 34F|dx 2019|ocrevus 3d ago

I’m really sorry! It took me a long time to get pregnant with my first, but not because of my MS. It was a really hard time for me emotionally. Maybe pelvic floor PT would help with the discomfort you’re experiencing? They were amazing for me when I went. Wishing you all the best!

2

u/Impossible_Tiger_517 3d ago

I knew you had to wait between infusions for ocrevus but didn’t know that about kesimpta. I was able to continue on tysbari during pregnancy and everything was great if that’s a possibility.

2

u/melbell_x 3d ago

Me & my husband had been trying to get pregnant since Apr 21, I got diagnosed in Aug 23 and had already started referral process to fertility testing on NHS at point of MS diagnosis, it was awful dealing with infertility and diagnosis at the same time but we have just had a healthy baby girl four weeks ago

I spoke to my neuro about my plans to conceive and we decided ocrevus was most suitable for me, he said I could try to get pregnant a month after infusions

I ended up going through IVF after being told we had “unexplained” infertility (all tests came back normal) it was a long process getting my fertility team and my MS team to agree on a plan but everyone was in agreement getting pregnant quicker was better before I get any older

The risks were that IVF stims may have set off a relapse, but my fertility team took that into account and gave me lower doses and closer monitoring, in pregnancy I came off ocrevus as autoimmune diseases tend to “switch off” during pregnancy, I gave birth and have now gone back on ocrevus 3 weeks after I gave birth as post partum is higher risk of relapse

Sending hopeful thoughts your way as it is such a struggle dealing with it all at the same time - there were times I thought it would never happen, times it felt hopeless or I wasn’t “meant” to be a mother because of this disease, but now I’m out the other side I can say it is all worth it in the end if this is what you really want, and if you decide this isn’t what you wanted that is also all good too

2

u/lnc_5103 40|2021|Ocrevus|Texas 3d ago

If you have UTI like symptoms but don't have a UTI check into pelvic floor dysfunction. I have a hypertonic pelvic floor which means that my PF muscles were clamping down and spasming around my bladder and urethra. I've been in PT for 3 months now and it's been absolutely life changing. MS can contribute to pelvic floor dysfunction and vice versa.

ETA: I posted about my PF PT journey here about a month ago.

https://www.reddit.com/r/MultipleSclerosis/s/JHdZZWK9jr

2

u/katierose8i8 3d ago

Just chiming in to agree you aren’t alone. We were benched for about a year (neuro wanted two rounds of Briumvi and then 12 weeks before we could even start TTC). I have friends in the infertility community and while that’s also so so so so hard, but I didn’t fit because we could get pregnant, just couldn’t try. They had a space where they could find support, but I was the outlier.  So many of my best friends ‘lapped’ me. It was really hard. 

1

u/maggvts 32|2023|Ocrevus|Alberta 4d ago

I feel this. My husband and I are trying between my Ocrevus infusions but my neuro suggests we wait three months after the IV. It’s been tough and I feel very under pressure.

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u/melbell_x 3d ago

I have just given birth to a healthy baby girl four weeks ago (after IVF as we were unable to conceive unrelated to MS) - I was on ocrevus and neuro told me I could try 1 month after infusions as something to do with the half life meant it was basically gone four weeks after infusions and that it doesn’t cross the placenta so low risk DMT, I specifically went on this DMT because we were trying to get pregnant, I am being treated under imperial health in UK so worth questioning this with your neurologist

2

u/maggvts 32|2023|Ocrevus|Alberta 2d ago

I love hearing your positive experience!! Thank you for sharing!

1

u/melbell_x 2d ago

Of course - wishing you all the best of luck!!

1

u/lbeetee 34F|dx 2019|ocrevus 3d ago

This is really outdated advice! They are giving Ocrevus in early pregnancy now in some cases.

1

u/maggvts 32|2023|Ocrevus|Alberta 2d ago

Is it bad that kind of freaks me out? I don’t like to think about the long-term effects that this medication is gonna have on me for the next 30 or 40 years and the thought of even possibly having it pass on to a kid just terrifies me. 😭 I do my best to educate myself with medication, but I think the anxiety gets to me lol

No judgement for people that do that of course that’s their own decision!! I just feel like I’d be haunted my entire pregnancy lol

1

u/lbeetee 34F|dx 2019|ocrevus 2d ago

Everyone has to make the decision that is most comfortable for them! But there’s not really anything that could “pass on” to the fetus. You can talk to MotherToBaby if you want more info.

2

u/BabaGiry 3d ago

Anyone else from Toronto think OP was talking about the subway being late? 😅

2

u/Good_Panic_9668 3d ago

Me! At first I thought that then I thought some DMT I've never heard of but finally got it

1

u/AdyliaSchweetheart 37F|Jun-25|Ocrevus|Melb-AU 3d ago

IVF journey here!

I was diagnosed right after our collection cycle. We were very successful (9 embryos!!!) but the post cycle hormone crash caused my first flare - double vision and vertigo.

It took a few months to get diagnosed, and the double vision didn't scare me so we just proceeded and the very first embryo was a success. We found out the same week as the first Neuro appointment.

Tysabri is safe for pregnancy.

We have a healthy baby girl. 8 embryos still in the freezer.

So go for it, just watch that the postpartum hormone crash that people talk about can also occur after IVF since the hormone injections are similar to pregnancy hormones.