Pregnant with large fibroids - positive stories needed!

[TempsPerdu]

In need of some moral support! I'm 17 weeks pregnant (1st pregnancy) and just back from first appointment with obstetrician. To say I'm now a tad worried is an understatement!

I've known I've had several subserosal fibroids for a few years, but they've never really caused any problems - the odd bit of pelvic pain/pressure and bloating but no heavy bleeding or any of the usual horror stories. Now I'm pregnant, though, things seem far more complicated. I've had several scans now (NHS and private), and no one can agree exactly how many I have, how big they are or where they're situated. Biggest looks to be around 12cm x10cm, then there are either one or two medium sized ones (6 x 5cm)that are potentially blocking the cervix. Apparently I'm already measuring at 24 weeks, and am going to be absolutely huge by the end.

Today's consultant was lovely, although at first she seemed keen to push the usual 'wait and see/try for a natural delivery' route. When she scanned me, though, she seemed shocked at the size/number of fibroids, and indicated that based on this I'm unlikely to avoid a C-section. However, she also implied that a C-section would itself be risky due to the potential for blood loss and the tricky location of the fibroids (there isn't much space for them to cut that isn't fibroid/baby). She then came out with lots of dire warnings about fibroid degeneration and how painful it was, the possibility of a hysterectomy during the C-section and the possibility of pre-term delivery. Apparently it's almost certain to be 'a difficult pregnancy', as she put it.

The fibroids aside I'm otherwise totally healthy, slim with a normal BMI, and currently feeling fine in myself, so I've been left a bit bewildered by the whole thing. Has anyone experienced the joys of fibroids in pregnancy and had a positive outcome? I'm obviously now worried about the wellbeing of the baby (who thankfully seems fine at the mo) and my own recovery from what could be a difficult C-section. Any advice gratefully received!

Hi

I think there's a couple of us lurking on here with ok on-going pregnancies and fibroids.

I also knew about subserosal ones pre-pregnancy, and was fairly sure what was where back then due to an MRI. Similarly though, in pregnancy things have changed, and they are a lot harder to image on ultra sound.

I've been lucky in that my largest has shrunk as I've gone along (am now 32 weeks) and hasn't degenerated. I think another poster on this site has had to deal with degeneration though recently :-(

I've had mixed experiences with consultants - which wasn't helpful - but it's because it's quite hard to predict what impact fibroids will have. The first consultant I saw (16 weeks) was very balanced, went over risks etc for trying labour and for c-sections, and said we could consider either, signed me up for growth scans (did scare me slightly about degeneration too!). At 28 weeks I saw a different consultant who was very dismissive of issues fibroids can cause with labour and was against c-section. I then went away and did a lot of reading and thinking, and due to another factor that came into play I decided strongly in favour of elcs. I then saw yet another different consultant this week at 32 weeks who was happy to go with whichever approach I favoured, so elcs now booked :-)

I think there can be very little certainty unfortunately about how fibroids affect pregnancy and labour. Nobody has a crystal ball, and I know how frustrating that feels!

I found this paper to be a good summary of risks and approaches:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2876319/

I couldn't find much more recent or UK focused!

Obviously I haven't seen any of your scans and I'm not a medical professional, but I had 'Very large' fibroids that I was completely unaware of until I had a section with DS1 (though it explained hwy my stomach wasn't flat when I was 7 stone!). The consultant who did my section was very surprised I had never had any issues with them before. he did say they can grow bigger during pregnancy so it may be that mine weren't as bad beforehand, but anyway I have now had two sections without any issues. She did recommend that I also had a section with any further pregnancies if the fibroids were still the same size, so I did so.

12 years later, I still haven't had any issues yet that I could say were due to the fibroids (my stomach will never be flat now anyway as no way will I see 7 stone again ). It could be that I was just lucky with the location of them. Hope all goes well for you, OP!

Thanks for the reply User - that info's really helpful. Yes, it's the not knowing that's my main worry - no one can give me concrete answers about anything, and I don't deal well with uncertainty at the best of times! I think an elective C-section is looking like the best option at the moment (an emergency one could potentially be a nightmare given the complications) and hopefully my consultant will be on board with this.

I'm also slightly anxious about the fact that I'm due over Christmas - I know the NHS doesn't exactly shut down over the festive period, but I'm not confident that in the event of a 3am emergency caesarean on Christmas Day they'll happen to have the best possible people for the job on duty! Would much rather have a calm, controlled scenario if the risks of p-p haemorrhage etc are as severe as today's consultant was warning. But it's early days yet, and I think I'll have to accept that it'll be a wait and see approach for the time being.

Thanks Roomba, that's reassuring. Sounds like you've been very lucky with yours! I can identify with the 'fibroid belly' - I've always been slim (8 stone-ish before I got pregnant) and for years was slightly confounded by the fact that I had a stubborn pot belly and found abdominal exercises like sit ups so hard (I was bending over a huge fibroid). Hoping they'll shrink back down to a respectable size after the baby's born - apparently breastfeeding helps, so hopefully I can manage it.

I've just got home after a five day stint in hospital due to fibroid degeneration. It is really rather unpleasant.

My fibroid didn't show at 6 and 12 week scans - came up at 17 week private scan and was 7x8cm. Apparently pregnancy hormones make these things grow. It is now 7x9cm, intrauterine and sitting up relatively high up so out of the way for labour. It is making scans awkard as the baby doesn't have the usual room to move and is scrunched over. He'll bully it out of the way as he gets better.

I won't scare you with the details of degeneration but if you start getting strong abdominal pains that can be equated with contractions and/or appendicitis then get yourself seem to. If you really want all the details of the last five days let me know and I can update here or via PM tomorrow when I'm a bit more human.

My biggest risk now is further degeneration and bleeding during/after birth. The second is the biggest one on our minds right now so we are putting together a plan. After the birth I will need to decide how to get rid as it is likely to cause more problems for future pregnancies (this is my first).

It is now 8x9 cm and baby will bully it out of the way as he gets BIGGER not better! He is perfectly fine right now. I am 21+5 btw.

Ginger you have my sympathies - that sounds horrific! Hope you're on the mend now and glad to hear baby's doing well. Think you can probably spare me most of the details, as I've read up quite a lot on red degeneration and can vividly imagine (though quite another thing actually experiencing it, obviously!). Were the hospital able to give you anything for the pain?

The obstetrician today kept telling me to 'just relax and enjoy the pregnancy', but it's quite hard to do that when you have the (not unlikely) prospect of these unpleasant things happening to you!

They saw fibroids at my 10 week scan, but didn't mention it at my 12 or 20 week scan although I could see them. I'm guessing they're doing a wait and see, as I get another scan since I'm under consultant care for my BMI and because I'm a FTM. Was told that they're not blocking the cervix so its fine, and my anterior placenta isn't blocking the cervix but that could change so to be on the look out at my last scan for them to give me a c-section date instead. :/

They started me off on Pethidine. When that stopped working I was put on something which I remember sounded Dippy Deloaras but obviously it didn't have the name of a drag queen!

The way I had it explained was that, for pregnant women, after paracetamol there are only opiats. Not ideal and in the third trimester they would have had issues giving them to me, due to baby developing an addiction, but as I am in T2 then it was okay. I was still closely monitored and the Dippy Deloras was only when I asked for it, not every six hours as the Pethidine was.

The next step was an IV line with morphine on demand so I was happy to avoid that. The other two did make me somewhat stoned/high which was interesting!

Hi, I have two fibroids the biggest of which is 12x10cm and blocks my cervix. I had a section with my first and am currently pregnant with my second child but will be booked in for another section once I see my consultant in a few weeks.

My c section incision was done vertically rather than horizontally to allow more space for the surgeon and they did have to cut through my placenta to get my daughter out.

I spent a few days in hospital with similar symptoms as GingerHanna around 22 weeks.

If you have any questions let me know x

I have 2. One is currently 7x4cm the other 4x4. The smaller one is blocking the exit for now. Told they would re-measure at 20 weeks then go from there.

Hi ladies
I also posted about fibroids in pregnancy a couple of weeks ago and got directed to this thread. I knew I had fibroids as I had fertility investigations about 18m ago and they found 4. All outside the uterus and biggest was 7cm. Biggest is now 9x9 in pregnancy and I ended up in A&E on Saturday with degeneration. I'd been told that it can be painful, but I'm normally quite good with pain but was not prepared for this. I'd also been told it's quite rare for them to degenerate so I wasn't expecting it this early. I'm on codeine and paracetamol and 15w pregnant. Been on bed rest since Friday and wondering how much longer this will last.

@GingerHanna are you better now? I really hope so.

As for cs, my dr says it's hard to tell this early because as the baby and uterus grows, everything will move round so you won't know until a bit nearer (I think around 28w) whether it's likely to interfere with birth. I definitely can't deliver in the birth centre, it has to be labour ward.

One bit of advice I'd give @TempsPerdu is it's good to be aware of degeneration as none of the midwives seemed to know what to recommend. From googling I knew other women had been given codeine and been admitted etc and I was pretty sure the pain was from fibroids. But they kept just saying its ligament pain and to take paracetamol! Even the A&E dr thought it was nothing until she spoke to the consultant gynaecologist. So if you suspect it, keep pushing until you see someone who you trust can assess the situation properly (a sonographer or obstetrician I'd say).

Hi Star, sorry I missed your other thread - welcome to the oh-so-enjoyable fibroid club! Good to find that there are a few of us on here, as most people I've mentioned it to have never heard of fibroids.

Sorry to hear you've been suffering. I'm just about 20 weeks now (scan on Friday) and while I've had plenty of fibroid-related aches and pains, I've so far escaped the dreaded degeneration. You're totally right about the lack of awareness among midwives, GPs etc - I'm very much monitoring things and have instructed DP that if it does happen and I'm somehow incapacitated it's his job to fight my corner and get them to do a diagnostic scan.

My main issue at the moment is that as I'm measuring way ahead of dates (mostly fibroid rather than baby at this stage), I'm experiencing a lot of the things that tend to crop up later on in pregnancy - I have horrific heartburn and indigestion from everything being so squashed together, and already feel huge and unwieldy - getting out of bed in the morning is becoming more and more 'interesting'! I'm short and have quite a petite build, so am sporting a comedy 'Mr Bump'-style belly, which is only going to get worse! All a bit depressing, seeing as this is supposedly the 'glowing' stage of pregnancy...

I'm in the same boat as you re the extra scans - it's very much watch and wait at this stage. Obstetrician did indicate though that elective CS looks most likely for me, as the size and positioning of the fibroids means that at least one of them is likely to end up in the way. Official due date is over Christmas, and I'm very wary of the possibility of an EMCS at this time - I know the NHS doesn't grind to a halt over the holidays, but I'm not convinced that staffing levels will be exactly the same, and the fact that I'd need an advance scan, am at higher risk of PPH and (worst case) might end up needing a classical incision means that I really don't want an emergency, last-minute scenario.

Feels so weird having to think about all this stuff suddenly when the fibroids have never caused me any issues pre-pregnancy!

GingerHanna Really sorry to hear about your experience - hope you're well on the mend now!

Hello lovely ladies
Wow I wanted to talk to people like yourselves months ago when I first discovered a huge fibroid on my 13 week scan. I struggled to find any other support or advice ( other than a few American responses thanks to Dr google)
I was totally unprepared to be told that I had a 15cm by 15cm by 15cm subserosal fibroid growing alongside my baby. ( the size of the bump ( my 2nd pregnancy did make me and a few people suspect it was twins!) I'd had no symptoms apart from painful periods as a young person) any way I was referred to a consultant 2 days later who was brilliant, he did explain the dangers of degeneration , pain and premature labour and prescribed codeine and regular scans.

Fast forward I'm 37 weeks tomorrow and have been booked in for a planned caesarean on 24th August. ( I'll be 39+1) 🤗 I have had some uncomfortable pains and my bump was oddly misshapen but it's evened out now, and it's actually been a quick easy going pregnancy. I have had to take the codeine and obviously I'm having a c section but I'm fine with that as I had a horrific birth / torn placenta, loss of blood, 3rd degree tear. After the birth of my daughter in 2013, so we are mentally and emotionally prepared for my c section. My lovely calming consultant is going to do the operation and has reassured me that I will be looked after and the fibroid which has grown even bigger to 17cm by 16cm by 15cmwill be dealt with after I've given birth and healed.

It's a hideous thing but in my eyes it could be worse and after watching a very close young friend die of cervical cancer 5 years ago, I am thankful that it's not cancerous!

I know I'm lucky to have conceived 2 nearly) gorgeous children and at nearly 40, I will be ok with a hysterectomy to get rid of everything.

It's Annoying that considering how supposedly common fibroids are in pregnancy how little information is known or published!

Sending positive thoughts to you all and good vibes. Don't let these hideous fibroid turn having a baby into a worry. I was totally freaked out at first but then realised it was affecting how I was feeling about this planned baby.
Xx

Hi lily, thanks for your post - it's so nice to hear a reassuring story about fibroids for a change! I think the thing with fibroids is that they're so unpredictable; they could cause no issues at all, or they end up posing much more of a problem. I think you have to just gather as much information as you can (as you say, there's not a lot out there!) and take each day as it comes. My consultant terrified me at the 16 week appointment with all her dire warnings about possible complications, but I understand it's their job to inform you of all the potential risks, no matter how rare they might be!

Wishing you all the best with the rest of your pregnancy and the C-section - not long at all to go now, and it sounds like you have a lovely consultant, so you're in good hands.

Hi there, Just wondering how you things ended up going for you? I’m currently 15 weeks pregnant (but look 25 weeks due to my fibroid). I was completely asymptomatic and only I discovered I had a fibroid st 7 weeks pregnant , after I had some mild bleeding. At 11 weeks it was 11cm. Turns out mine is the kind had grows in response to oestrogen and at 13 week scan it had ballooned to a whopping 18cm x 12cm x 8cm. I’ve been told there’s no way I’ll be able to have a vaginal birth due to the position of it (it’s blocking the birth canal) and will need to have a specialist c section, most likely with a vertical cut because of the location of the fibroid and the risk of haemorrhage. Not looking forward to red degeneration but mostly I’m just terrified of losing the baby due to preterm labour, and having to have an emergency hysterectomy. I’m 39, and this is my first baby. We were lucky to conceive in our first month trying but who knows what would happen if we have to try again....Has anyone had a Myomectomy once they’ve healed from c section, and then gone on to have another baby? I’d really love some positive stories because I’m so scared. Thanks.

Hi @EchoEcho123, I know you posted a while ago so you must about full term now. I just saw this though and thought I’d update on my situation...

My fribroid was not in the way and at my ast scan (36w I think) the consultant felt I could deliver vaginally. Went into labour at 39+1 and laboured fairly well until fully dilated, but DD was back to back and got stuck after 3hrs pushing. Don’t know whether the fibroid was anything to do with that. Ended up needing an emergency caesarean - the external cut was horizontal but the internal one was difficult because the fibroid was in the way so the surgery was more complicated than usual. Took a long time to recover, but DD was healthy and had no problems. I was advised to have a planned cs for future pregnancies so the fibroid position is known and planned in. I’m currently 5w pregnant with my second so v early days but if things go well, I expect to have a planned CS and feel comfortable with that.

Echoecho and TempsPerdu, I know this forum is years old now but wondered how you both ended up getting on? Xx

Hi @Bristolgal567 . I’m pleased to say that my complicated fibroid pregnancy resulted in a healthy baby girl, who will be starting school in September. She’s perfect, but will remain an only as any subsequent pregnancy would have required fairly major surgery to remove the fibroids, which really focused our minds on whether we wanted a second child. We were tending towards sticking with just the one anyway, and this just made our minds up more firmly.

It ended up being quite a difficult pregnancy, but with nowhere near the drama of some you read about on MN! Due to the enormous fibroids DD was breech, curled around the largest fibroid, which was a pretty unique position according to the obstetrician! Her head was pushing on my lungs, which meant I was very short of breath and fainted a fair few times in late pregnancy - couldn’t walk very far at all by the end.

At my 5 month scan I was diagnosed with placenta previa (again linked to the fibroids) and given lots of dire warnings about bleeding, but luckily I never experienced any at all. I also never had any fibroid degeneration, which was a massive plus as by all accounts it’s very unpleasant.

We always knew birth would be via ELCS, and due to the placenta previa this was booked in at 38 weeks (had to push for this a bit as the dr who booked it in was a locum and unaware of the risks of going into natural labour - he was going for 39 weeks). Due to the risk of severe blood loss from the PP and the fibroids the birth itself was about as medicalised as it can get - 2 anaesthetists, 2 consultant obstetricians, loads of people milling about - but actually it was really calm and uneventful (I got to choose my own music etc), and although I did lose about a litre of blood I was just grateful at that point to have a healthy baby.

Tbh most unpleasant part was our stay on the postnatal ward - I recovered pretty quickly from the c-section all things considered, but DD developed jaundice so we were stuck on an overheated, noisy, dirty and understaffed ward for 5 nights with a permanently screaming DD who was later diagnosed with reflux.

Breastfeeding seemed to help the fibroids to shrink down a bit, but my body is sadly by no means ‘back to normal’ - as someone with an otherwise fairly petite frame I’m left looking about 5 months pregnant, something that would only realistically be rectified with a hysterectomy. I am regularly congratulated on my non-existent pregnancy, and only today at the library with DD I was directed by a volunteer to the shelf of kids’ books about getting a new sibling! It’s a bit depressing, but not a big deal in the grand scheme of things - I’m otherwise fit and healthy, and DD is brilliant.

Hope that helps! Happy to help via DM if you have any specific questions/concerns.

Hi @TempsPerdu i come on here v infrequently now and just saw your update. My youngest child is now 3 and I too look 5m pregnant. I have diastasis rectii and fibroids of course find it really tough that I have no waist. If I think “who cares” and stop dressing to hide it, I get offered a seat on the tube every time, which honestly makes me low for the whole day. I’m otherwise fit and slim and trying to repair my core through exercise but I don’t know if it will be possible. I’m nervous about surgery but will consider it.