TTC with large 10cm fibroid

Hi all,

Thank you for the well wishes!

I am now Day 7 post-myomectomy. The surgery was a great success - I the 5 small fibroids had shrunk to nothing with the Esmya and there were 3 other large ones that needed removing. The biggest was about 12cm in diameter as suspected, the next was about 5cm and another one was found that was about 3cm.

I opted for a spinal anesthetic which was a GOD SEND! The operation was about 2hrs long and when I came round, I was numb from my waist to my toes. That lasted until Tuesday lunchtime but meant that I was quite "with it" after my op. That first night was a bit of a blur but I was woken up hourly for blood pressure checks and more pills.

In the morning, a nurse removed my catheter and helped me out of bed. Whilst I managed to get up and shower, I almost collapsed in the shower and ended up having to be carried back to bed. Nothing can prepare you for how even the smallest of activities can completely exhaust you. Physio started that day too with very light pelvic floor exercises - again, totally exhausted after that.

My biggest piece of advice is to take the drugs - all the drugs - as soon as pain starts to hit and get ahead of it. It is uncomfortable and it is painful but if you can mentally prepare for that (which I did) and stay ahead of the game with the painkillers, you'll be in a good place.

Bowel movements didn't kick in until Wednesday evening. The post-op bloat actually causes a lot more pain than the operation itself at times so make sure you ask for laxatives from the onset. Eat lots of fruit and veg too and make sure you do the exercises they give you which all help to aid the wind you get.

Coming home was harder than I thought it would be. Little things like being able to sit down on the sofa and get up again were far more challenging than I anticipated. My mum has been looking after me since I got back and I haven't lifted a thing or over exerted myself. Every day gets a little easier and I can now climb the stairs without it feeling like I've run a marathon and without it inducing extreme pain.

My scar is really neat (like a c-section scar) and I've just taken off my bandage. I feel extremely bloated around my middle still and it's quite numb around the scar, which I think is pretty normal. I'm drinking lots of peppermint tea, 8 liters of water a day and moving every 30mins but if anyone else has any other tips on how to cure this, I'm all ears! I sleep for about 2-3hrs a day still but will be going for a little walk down the road tomorrow to see how much I can cope with.

I'm signed off work for 8 weeks and whilst right now I don't think I'll need all that time, I am reminding myself that I'm only 7 days post-op. I'm seeing the consultant on the 3rd for a check up but I'm so glad I had it done and that I'm on the right side of it.

No idea when my periods will come back and my natural cycles can reestablish themselves. Hoping it will be soon!

Hi just saw this thread I had a open myomectomy on Wednesday due to painful and heavy periods continous bloating and discomfort made me make the decision to have them removed (biggest fibroid being 15 cm by 10cm weighing 1.4kg distorted my womb I had 4 all removed ). Even though I am sore I think this is the best decision I ever made. All the dr has said to us is that if I ever did get pregnant I would have to have a c section.

Hi Ladies,

jgatz. I hope your op goes well do keep us updated. You will need at least 8 weeks off work, I am still off and its been 8 weeks but still feel shattered. I was advised that it could be a vertical incision on the day of the op which sent me into a panic but my own surgeon said it would be a horizontal. When I woke up that's the first thing I wanted to know and the nurse reassured me it was a bikini incision.If you have any queries regarding the op I am happy to provide you with any information.

Apple, hope you are doing well. Yes, 10 weeks was good I think I was originally told 3 months and then there may of been a cancellation. I went in for surgery a month after that though after mine was mistakenly cancelled. My main advise is that you need to be prepared, if you are all organised and happy to go if there's a cancellation then that's good. I needed to get myself organised before which is why I was glad it was rescheduled because it took me a while to feel prepared. I have never had surgery before so this has been very significant, it is major surgery but you will be surprised how you managed to cope with it , I was and I am a bit of wimp!

My pains are getting better although still having internal pains although not as frequent. My stomach hurts if I over do things and the incision feels a bit tender but okay. My stomach is not as big but still bigger than before the op! I really hope it improves.The main thing is I still feel very tired post surgery probably not helped by me still having anemia which I suppose would be expected initially after surgery.

I now feel that I m getting there slowly.

Hi Apple!

Whilst I'm not currently TTC, I am nursing 7 (potentially more) fibroids, 2 of which are large (12cm + 7cm) and pedunculated on top of my womb. I've had a lot of pain with them, presumed to be because the stalks they're on are twisting and they're fighting for space.

I've been on Esmya for 2 months now and the side effects aren't fun. I've had hot flushes, feel nauseous nearly all the time, had quite a few headaches and have felt so tired that at times I've had to put my head down on my desk to take a spontaneous nap. I've just been for a follow up appointment with my consultant who doesn't think Esmya is making a remarkable difference to my fibroids and as I'm still having consistent pain with them, I've decided to opt for a myomectomy, which I'm having on the 12th June. If I wanted to conceive now, it's unlikely that I would be able to carry a baby to full term with the positioning of my fibroids as they are so I'd rather have them sorted now so that I limit the issues with conceiving further down the line.

My consultant has advised me that it'll most likely be a horizontal incision but because of the size of them and the fact they are on top of my womb, there's a chance she'll have to do a vertical incision. I've been signed off work for 8 weeks to recover post-op. At this point I can't wait for it to be over - I'm in almost constant pain and can do very little exertion without really feeling the consequences.

I found this excellent thread that gives pre-op and post-op advice for a myomectomy if anyone's interested - www.fertilityfriends.co.uk/forum/index.php?topic=313215.0.

Can't wait to kick these 'broids in to oblivion!!!!

Hi Ladies,

Apple, I'm glad to hear your appointment with the consultant went well and even though it means you have been advised surgery I'm sure you are pleased you've got a solution. I had to wait about 10 weeks for my original op date, which was then cancelled by mistake and because I was too anxious about it being ungraded to open surgery! It may of been so quick because I declined the medication which I would have had to have for 3 months. It was a gamble I took because the medication is supposed to shrink the fibroid as you say which should make the operation safer.

My AF arrived after 25 days ( usually 28 days) and was unfortunately about the same it terms of heaviness. I have read online though that they can be lighter, heavier longer, shorter for a few months after surgery. I had a few wobbles where I thought what if I have had this done for nothing and it doesn't improve anything but then the alternative could of been the fibroids continue to grow and I could of ended up having a hysterectomy if there were problems at a later stage ,so I'm happy about it now.

Recovery is slow, I'm able to do a lot more but still get lots of different pains and am very tired and still off sick. The scar is healing nicely although my belly is huge apparently the surgery causes it to swell but hopefully it will all go back to normal soon.

It is major surgery but I surprised how well I have coped. My consultant wrote a follow up letter to my GP saying I have 3 fibroids removed! largest was 7 x5 cm and in the fundus.

I am more than happy to provide any information you need about the surgery.

Hi Ladies,

Apple, I'm glad you have the medication hopefully that will shrink the fibroid quite a bit. How was your appointment were you given any useful information? would be interested to hear how you got on.

Bacon, thank you for your reply. I was in hospital for a couple of days I actually thought it would be as long as 5 days as that's what it said online but you know how quick hospitals are to get you out quickly! I felt like I would have maybe been better staying 1 more night as its easier to get around with all the hospital adaptions if that makes sense. But having said that I slept really well when I got back and I only slept a bit whilst I was in hospital so it was probably better.
I know what you mean about the different views of consultants. It wasn't an easy decision to go for surgery particularly when it went from the what was going to be a simple procedure to open surgery!
I have never had surgery or even been to hospital so it was pretty major. I actually worried the other day what if I have gone through all of this and there are no improvements! I'm sure there will be though and I'm glad they were removed as mine had grown and would have continued to get bigger.

I am currently getting some very sharp pains ahead of AF hoping it will get better soon!

Little , thanks for the link.

Hope to speak to you again soon ladies.

Hi all. I've no experience of fibroids but saw your thread and thought of an article I'd read recently on shrinking fibroids naturally. I thought I'd link to it in case it was of interest.

www.floliving.com/what-causes-uterine-fibroids/

All the very best of luck to you all x

Hi ladies,

I'm so sorry for not replying on here for a while. It's been a hectic few weeks and I've been keeping an eye on the thread but just not getting chance to reply properly.

Anyway, I'm so pleased the op went well Hopeful. It sounds like everything went to plan and they were happy with - which is great news! I'm sorry you're still feel exhausted and sore, but as you say, it is major surgery and you'll need plenty of time to heal. How long did you have to stay in hospital for?

I hope you feel much more positive about things now and can look forward to starting a new TTC journey when you're able to. It must be a nice feeling to know you haven't got them in there anymore. Did they say how long they'd expect it to be before you get your period?

Apple I'm so sorry you've had a rough time with your consultant. I completely understand why you would have feel upset and annoyed after your consultation. It's good that you are sticking to your guns and trying the medication first - like Hopeful says, you have to do what feels right for you.

Our fibroids sound incredibly similar (that's a weird thing to say, I know!). Mine is also 15cm (as of January) and growing at the top of my uterus (and sticks out a lot!). The only difference seems to be that I don't get pain with mine like you do.
It's interesting/concerning how different the advice seems to be though. My consultant (who I saw privately) didn't at any point say that a fibroid of this size would affect pregnancy or TTC and that he's just had a lady give birth to a healthy baby with a fibroid the same size and location and mine. He said it was up to me what action (if any I took) and that it would be fine to leave it where it is and carry on with TTC if it wasn't causing me pain etc.
He did also say that different consultants will tell you different things and that there's no right or wrong way - it's what's best for you.

Everyone is different and I know no two ladies with fibroids are never going to be the same, but I find it really interesting to hear all of your stories and what you've been told.

I think it's the best idea to get a second opinion Apple, and I really hope the consultant is able to give you some reassurance and guidance about your options tomorrow. Do let us know how you get on!

Not much change to report here. I'm still TTC and I've noticed my periods are getting slightly longer, which is worrying me. I'm also concerned the fibroid is just going to keep growing! It feels weird just leaving it there but I'll see how the next few months go.

Look forward to hearing updates soon! Take care xx

Hi, I thought I'd post again so we don't loose this thread among all the others!
Its been a few weeks since my surgery and I'm now feeling a bit better although I've had lots of new pains in the last few days and still very exhausted if I do too much in particular.

I'm yet to see how my first AF will be post surgery, I've read it can be quite painful but hopefully there will be some improvement.

I am trying to take it easy as it will take a while to recover fully.

How are you all ladies?

Would be lovely to hear from you.

Hi Ladies,

Apple, thank you for your well wishes.

I'm out of hospital now, it feels like it will be at slow recovery to begin with as its a struggle to walk but Its major surgery so need to take time to heal .Fibroids were 7cm and 3cm when they removed them so bigger than the surgeon originally thought they were. I chose to have the abdominal Myomectomy rather than Laparoscopic in the end because the surgeon thought they may end up needing to do the abdominal anyway so I didn't want to have both if that makes sense.
It is more major surgery but because of the size they would have had to be done by abdominal anyway so it all worked out well that way. Having the general anesthetic was the most scariest part but I had the loveliest anesthetist who reassured me and looked after me so well. The surgeon said I didn't bleed much and the surgery had gone to plan, the surgeon and the staff were all very nice and that made copying with it all so much better. It has been tough and will be for sometime, but I am so grateful so far it has all gone well.

Apple, sorry to hear your fibroid has grown it sounds like its causing you quite a bit of bother now. I'm sure I've have read that fibroid embolisation is not recommended if you are ttc as it can damage fertility. Have a read of the information on britishfirbroidtrust.org.uk it's quite useful.

My surgeon wanted me to take the drugs to shrink the fibroids even though I was having surgery and even suggested I have one dose before my surgery but I said I didn't want to so he was fine with it although he thought it might make the surgery less problematic, so I am very surprised your consultant isn't encouraging you to take it before surgery.

You have to have confidence in the surgeon/ consultant so maybe see if you can get referred to any consultant, I think private is rather costly but you have to do whats right for you.

I am more than happy to chat with you more if you need any further information. I find it so useful to share information and have lots of free time whilst I'm recovering!

Hope everyone else is doing well.

Hi Ladies. Had my op yesturday still in hospital. It went well but still quite a bit of pain. Fibroids were removed via abdominal mymectomy. Now have lots of ttl and take things very slowly. Hope you are all well.

Wishing you the very best of luck with your op hopeful, I really hope it all goes well for you and that you're back up and about in no time afterwards.
Do you know how long you have to stay in hospital for?
I'm sure you'll feel like a new person once it's all done and dusted, and those three months will fly by! Do let us know how you get on if you feel up to it while you're recuperating.

Fingers crossed for your appointment Apple, I hope you're able to get a more clear idea of what's going on from your results and can then figure out your next step. I'm sorry you're suffering with it at the moment, it's not nice at all.
Mine is currently huge and making me look about 5 months pregnant - the sad irony being that it's impending AF causing me to look like that.

Speak soon x

Hi Ladies,

Apple, sorry to hear you are suffering with fibroid at the moment, does it happen at a particular time or just plays up now and again? Is the MRI results going to give you idea of what treatment might be needed, hope you don't have to wait too long.

I'm off today and getting stuff prepared to take to hospital it's going to be strange not being able to do anything for a few weeks.

Hope everyone else is well!

Hi ladies,

Sorry I've not messaged for a while, it's just been a hectic week with work etc.
It's so interesting to read more about everyone's experiences though, thank you for sharing.

Hopeful I am 33, so I'm also concerned about age not being on my side. I try to not think about that too much, though, as I hear about so many ladies that have babies later in life. My sister-in-law had her second child at 43 - 15 years after her first! And everything went absolutely fine.

That's great news that you have a date for the op and you can now focus on getting it done and then moving on with your TTC journey knowing don't have an unwanted guest in your uterus! Plus, as you say, it will improve your overall health and wellbeing.
There will be thousands of ladies who have gone through this and who have had successful ops, so try and keep focused on all of the positives (I know that's much easier said than done).

I'm so sorry to hear about your MC experience Apple and I can completely understand how part of you must wonder if the fibroid had anything to do with it, even though the research suggests it didn't. Having periods in excess of 12 days also sounds awful, and I too would want to know what was causing it. I definitely have heavier periods, just for the first couple of days, and it was the first question the GP and the consultant asked me - but yet, as you say, they can't explain why a fibroid outside the uterus should cause that? It's really strange/frustrating.

My consultant didn't mention much about embolisation to me Apple, so I don't know too much about it. Other than what I've read online. He said that I could have an MRI, but that it's only really worth doing that if I was considering surgery. Have you had your results? I hope they've been helpful.
And yes, I was also on the combined pill since aged 17 and I also wonder if that has caused/hidden/impacted on the fibroid.

Welcome Lily and a huge congratulations on your pregnancy. From what my GP/Consultant said it's very common for ladies to only discover a fibroid once they are pregnant - so you're certainly not alone. Fingers crossed all will be fine for you, I'm sure it will. The fact we're being told we can leave ours untreated and still TTC tells us something.

I'm just trying to plough on with TTC, but every time I think about it I wonder if the fibroid is causing problems. I know it's still very early days for me, and there might even be other things wrong that I don't know yet!
I still hate the fact it's there and is so big and I can feel it all the time. And yes I also have to go for a wee more, plus it looks so massive when I need to go!

Anyway, this group is a real help and I really appreciate everyone sharing their thoughts! Hope you are all well otherwise.

Hi ladies, I thought I'd post again so we don't loose the thread. How is everyone doing?

I'm getting anxious about my op , only 2 and a bit weeks away but trying to stay as positive as I can!

Hi lilyborderterrier and welcome to the discussion about delightful fibroids!

I have now been given a new date for my surgery which is in a few weeks. I am now prepared although still worrying everyday about it of course. I have some read lots of positive stories about how well people have improved after the surgery and as I said before I am sure it is the best thing to do to improve my health. I won't be able to ttc now obviously as the op is in a few weeks and will need to wait 3 months after the op, which worries me as I'm 35 so time is not on my side. Currently in FW so feel a bit sad this one is going to waste but I'm sure it is for the best and have to think positively and remain calm.

Well we all seem to have the same fibroid (subserosal) which also from what I have read is the least bothersome. Lilyborder try not to worry as its on the outside of the uterus so shouldn't cause to many problems.

I hope Apple and Bacon you are both doing wel, please continue to share thoughts and updates on your appointments and how you are doing. I am happy to update you on my op. I will be off from work so will have plenty of time to myself whist I'm in recovery hopefully it will go smoothly.

Hope you are all well.

I started my periods aged 11, they were hideous painful and heavy, I went on the pill about 14 and was on it for about 15 years, I fell pregnant aged 34 and massive blood loss from a torn placenta but nothing was picked up that pregnancy. It does make me wonder if I had this fibroid then ?