What have everybody's experiences of pregnancy been like? Specifically with MCAS/POTS/EDS. I know we are all very different but I seem to remember a lot of people saying that the hormonal shift makes them less reactive. While others say it triggered them. If you have time to share I'd appreciate it.

Thanks.

57 Answers

poore
Answered 1 year ago    reply

I had the most horrific pregnancy. Not meaning to put you off

millican12
Answered 1 year ago    reply

I don't think it's possible to be any more put off that I already am, lol. Sorry, Jo. But hey- you're not dead! Party!

poore
Answered 1 year ago    reply

millican true but it felt like I was dying a slow death for 9 moths

millican12
Answered 1 year ago    reply

I hear ya, I really do. I know some people's kids hate them too, if they passed on the condition. Not to be taken lightly.


modette72
Answered 1 year ago    reply

For me, my migraines, nausea and pain was a challenge. Both of my boys, I started Labor in my 5th month and keeping them in was a challenge. I had specific food cravings and tolerances that changed with each pregnancy. My daughter was the healthiest and easiest pregnancy. All of my births I was in extremely long non-productive active labor that had to be assisted with medication etc.

modette72
Answered 1 year ago    reply

I was nowhere near as bad as I’ve been the last three years.

millican12
Answered 1 year ago    reply

Ouch, this sounds rough- but you repeated it.

millican12
Answered 1 year ago    reply

I'm sorry, it sounds bloody awful. Was it worth it though?

modette72
Answered 1 year ago    reply

Worth it.


l.mcguire
Answered 1 year ago    reply

I had all when I was pregnant x 4 but it didn't have a name yet. I was high risk. My POTs got worse. It was better when I was medicated. I had to see a cardiologist to monitor me. I had to wear more holter monitors and have more echos. I went into A. fib with my last and suffered a vertebral artery dissection after her birth. As I was medicated, my babies had to be monitored after birth but were fine. My migraines with auras increased a lot. I would sometimes have three in a day. I had some complications such as a partial placental abruption and sub chorionic hematoma. My placentas were small and aged prematurely. For some reason, my body cannot go into labour on it's own so I was induced all four times. As I had a lot of complications with my first, I was induced earlier with the other three and that helped. From a MCAD perspective...I felt like it went into remission. I felt so much better even though I was actually sicker on paper. I did pick up a few new sensitivities but they went away after pregnancy. I got worse after pregnancy especially after each girl for some reason. Would I do it again…100%.

millican12
Answered 1 year ago    reply

I'm actually in awe- you're hardcore!

l.mcguire
Answered 1 year ago    reply

millican I don't let anything get in the way of my dreams lol ...a lot had to be modified and it was harder but I wasn't going to give up without a fight My oldest is 14 and my youngest is now 5. It is a lot easier now

millican12
Answered 1 year ago    reply

That's wonderful, I'm really happy for you. A life lived in fear is a life half lived- you're so right not to let this disease take your dreams.


hofmann
Answered 1 year ago

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millican12
Answered 1 year ago    reply

That's wonderful, Hofmann- and I'm relieved to hear some good news. Thank you!


honorablecloud
Answered 1 year ago    reply

My first two pregnancies I felt AMAZING, my third was hard, but nothing crazy, just insanely tired from POTS and this time my migraines stayed with me, though they were less painful.

My first birth was hard for a lot of reasons, but reactions to medications and stitches from tearing made recovery harder. My second two were natural births and went wonderfully. Even with MCAS and POTS I was considered a low-risk pregnancy and opted for my last two to be water births at home. That happened with my middle kid and it was so great. My third I ended up at the hospital and fought to not be hooked up or given medication then checked out AMA 5 hours later. I could not handle hospital staff coming in with perfume on and didn’t want to risk a post-partum reaction.

After having each of my kids I enter a great place of no migraines and less severe reactions, boost in energy etc; but once I get my period back I spiral back into my MCAS/POTS war with my body.

Overall I Hofmann being pregnant, I prefer natural birth at home where you have more control over your environment and with a midwife who has time to learn about MCAS and what signs to watch for, and I Hofmann the postpartum time. I hate my period, except that having it means I can get pregnant again.

millican12
Answered 1 year ago    reply

This is the kind of thing I need to hear- I can't take any synthetic meds so it's vital I keep the whole thing natural. I'd be looking at spending some time on a massive health kick to get as fit as possible and AVOIDING the medical interventions. Thank you!

honorablecloud
Answered 1 year ago    reply

Wishing you luck!


babara.disguised
Answered 1 year ago    reply

Never felt that good, before or after.


nobuko_resolved
Answered 1 year ago    reply

I felt awesome. Back to "normal" after.


madrid81
Answered 1 year ago    reply

Other than diarrhea,my pregnancy was not bad. I still had flushing but headaches we're minimal, I didn't seem to react as much. And remember that everyone is different. Keep eating like you are now and doing your normal, you will have a precious little one at the end. Good luck

millican12
Answered 1 year ago    reply

Thank you- lovely to hear something positive!


xuanp
Answered 1 year ago    reply

I’m 28 weeks pregnant with twins, diagnosed MCAS for 3 years. My symptoms have not improved at all but they also have not worsened which I’m sooo grateful for! As long as I stick to my 5 safe foods and avoid perfumes, cleaning supplies, air fresheners, and salicylates in beauty products I’m good to go. I work full time as a teacher and take Ketotifen, Advair, Singulair, Levothyroxine, and Xolair. I use prednisone, albuterol, and dye free Benadryl for rescue meds & I have an epi pen but haven’t had to use during pregnancy.

b_maire
Answered 1 year ago    reply

Do you mind if I ask what your safe foods are and what you do for vitamins, if any?

millican12
Answered 1 year ago    reply

Wow- you sound incredibly strong!!! I do well with supps, luckily. Good luck with the twins, luv.

xuanp
Answered 1 year ago    reply

Maire I tried 4 prenatals and reacted to all of them so I don’t take one. For food I eat chicken, rutabaga, brussel sprouts, maple syrup, and I make these pancake like things using flour, water, salt, baking powder, and rice bran oil.

xuanp
Answered 1 year ago    reply

millican thanks! I’ve cried many times but I try to do the best I can! Very nervous about delivery but praying all goes well!

millican12
Answered 1 year ago    reply

Don't cry hunny, it will be ok. Let us know how you go and hopefully you will be all smiles with your babies.


luanna_m
Answered 1 year ago    reply

I think pregnancy was one of the triggers for the onset of this illness. A physical stressor and also hormones too.

millican12
Answered 1 year ago    reply

Very sorry to hear that, Luanna. I'm doing hypnotic hormonal treatment and responding well. Let me know if you need any help with it.


standley
Answered 1 year ago    reply

Are you planning on giving it a go, millican?

millican12
Answered 1 year ago    reply

I thought I'd pop quads, Pam, u know- just a bit bored, lol. Seriously though, if I'm going to do it, I don't have much time left to keep it natural.


agueropia63
Answered 1 year ago    reply

It was baby number 7 2 years ago that triggered me. I was so incredibly sick. And that's when it all went pead shaped for me... but I'd had 6 babies b4 hand without issue

millican12
Answered 1 year ago    reply

SEVEN????? Omigosh!!! LOL- by the sounds of things, you did ok!!!

agueropia63
Answered 1 year ago    reply

Yeah I was affected till last bub. Admittingly looking back a lot has clicked. But I've never been so unwell in my life then I was with him


wenona_85
Answered 1 year ago    reply

I had 5 uneventful pregnancies with 1 “allergic” reaction after each birth that required a trip to the Er. With my 6th pregnancy all hell broke loose! I developed preeclampsia (they said I didn’t have it), and had a still birth, 2 weeks later a pulmonary embolism then full blown pots and mcas ever since. I will say I always felt better pregnant and really bad after until I got pregnant again. Not sure if it was mast cell issues or something else. Sorry probably not very helpful.

millican12
Answered 1 year ago    reply

Oh hunny, I'm so very sorry. You obviously Hofmann babies. Sounds like your body was 'tricking' you into thinking it was doing better than it really was. I really hope things improve.


m.merissa87
Answered 1 year ago    reply

6 months bed rest:(

millican12
Answered 1 year ago    reply

Thanks Merissa.


hazel.screeching
Answered 1 year ago    reply

Terrible pregnancy including hyperemesis until week 30 and preterm labor, bedrest, gaining 70lbs, then late preterm but awesome home birth. post partum PUPPPs though

millican12
Answered 1 year ago    reply

Ouch! Sorry to hear that but I have to say it still sounds fairly positive- especially the successful home birth.

hazel.screeching
Answered 1 year ago    reply

My hubby didnt listen to me and turn up the hot water tank and so we didnt get to use the pool. I had a doula. Gave birth standing by my bed. 36+6. JUST avoided going to hospital as my floy had broken 36 hours prior. Took a lemon verbena cocktail to induce and it worked within 2 hours. My body was pushing on its own. Midwife only just made it. Still, ended up in hospital for her jaundice day 6 to 10.


aronson
Answered 1 year ago    reply

The first trimester, my body pretty much parked me on the couch. I was tired and nauseous, but otherwise OK. After that, I felt great. I felt like I could finally experience what "normal" feels like, possibly for the first time in my life. The birth was all-natural and fantastic as well. Since then (my daughter is 4.5 yo now), my struggles have returned, particularly with getting my period back and weaning. But I'm working through it.

millican12
Answered 1 year ago    reply

Wow- this sounds amazing!

aronson
Answered 1 year ago

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millican12
Answered 1 year ago

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marni
Answered 1 year ago    reply

I lost my first. Second (boy) and third (girl) I had some spotting throughout, but otherwise normal pregnancies. I am MTHFR 1298C, but didn’t know it, and was prescribed folate each time (Big no-no). I was also given progesterone. My son, who is chronically ill now, had trouble during delivery and needed assistance. I believe they tried forceps first and then eventually he had a vacuum birth. I wish I knew about EDS back then, that would have never happened. I had an episiotomy both times. I had mild postpartum with both, but didn’t realize what it was the first time around.

motherly.kimberli
Answered 1 year ago    reply

Ooh, I thought folate was ok but folic acid was not?

millican12
Answered 1 year ago    reply

I'm so sorry you lost one, Marni, this is what I'm concerned about. How would knowing about EDS have made things different?

jayna.97
Answered 1 year ago    reply

Sorry to hear of your loss Marni. I never knew. They used forceps and vacuum on me on my delivery. Had a hip and shoulder dislocated.

marni
Answered 1 year ago    reply

jayna thank you jayna. When you in the midst of your baby having trouble, you rely on the doctors. It seems so cruel now to enter the world, especially now knowing about EDS. I am sorry you had that experience, too.

marni
Answered 1 year ago    reply

Kimberli you are right, it is folic acid that is the no-no, not folate. My mistake. Thanks for pointing that out.

motherly.kimberli
Answered 1 year ago    reply

I have EDS too!! I’m sorry you have had such a rough go. You are strong

marni
Answered 1 year ago    reply

millican Knowing about EDS wouldn’t have changed my decision to have children. Having a miscarriage was hard, but it made me cherish my other children more. Knowing about EDS at the times of my pregnancies would have made me make more informed and better decisions. For instance, I may have asked to have a C-section instead of allowing my son to be vacuumed out. I wonder if the problems he faces stem from that procedure. I don’t blame myself, because I didn’t know. There are many decisions that came along in my children’s lives (anesthesia and surgery, vaccines, to Name a few) that would have been made differently had I known. If I had to do things over again, my choice would always be to have them, despite all we have been through. Of course they bring me joy, but I seriously cannot imagine what the world would lose if they weren’t in it. As far as having children in the thrusts of intense EDS/POTS/MCAS symptoms, that is difficult decision. My symptoms became a problem during peri menopause. I hope this helps in some way.

marni
Answered 1 year ago    reply

I look at the miscarriage this way, if I had the first baby, I wouldn’t have either my son or daughter. I got pregnant with my son a few months after the waiting period. If I had the first two babies, then I would have been too old to have my daughter. It worked out the way it was supposed to be.

millican12
Answered 1 year ago

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reliable.tressler
Answered 1 year ago    reply

my only reactive was EDS symptoms. I had many more dislocations/loose joint issues.


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