TTC with large 10cm fibroid

(16 Posts)
Apple78 Sun 05-Mar-17 10:53:34

Hi.
Starting a new thread as couldn't find anything very recent on this. Have been ttc for 7 months now since my miscarriage at 8 weeks in July last year.

I knew I had a large fibroid (10cm) before ttc but my GP and consultant advised that it should not affect my chances of conceiving due to the location (on the outside of the uterus right on top). They said it could cause pain during pregnancy but was unlikely to harm the baby.

Since the mc I have been getting some pain from fibroid, mainly first thing in the morning but it soon goes away when I get moving. However, we haven't had any success with conceiving and I'm wondering whether we were just lucky the first time (it happened the first month of trying) or whether something could be wrong. My periods have become longer and heavier but the consultant I'm seeing says a fibroid on the outside of the uterus should not affect my periods.

The consultant is keen to whip out the fibroid as she says it would make a pregnancy more comfortable. All along I've been keen to avoid surgery due to the risk of heavy bleeding which could lead to an emergency hysterectomy. I know this is very unlikely but it scares me as we desperately want to start a family. The other option is embolisation where they block off the blood supply to the fibroid, but I've read that this isn't normally recommended for women who want to retain their fertility. My consultant, however, thinks it's a viable option and has suggested we look at a combined approach of embolisation to cut off the blood supply and then surgery to take the fibroid out. She did admit that as a surgeon she always prefers the surgery option, so I feel like she isn't really considering the full picture. It all seems drastic to me as the fibroid is more of a nuisance than anything else. I can live with it (although it does make me self conscious as my tummy is quite big).

I've heard of the newish drug, Esmya, which is used to shrink fibroids before surgery and see it's now licenced for women to take intermittently to manage fibroids. Has anyone tried taking this prior to ttc and did it work?

I really can't decide what to do and would be grateful if anyone could share their experiences if they've been in a similar situation.
Thanks.

Bacon17 Tue 07-Mar-17 17:42:07

Hi Apple,
I just thought I'd add a message as I'm in a similar boat to you. Although I might not be much help!
I have recently been diagnosed with a 15cm fibroid (how do they get so big?!) on the outside of my uterus and am also TTC. I too get heavier periods now and it gets very tender, but I don't have pain.
I was terrified it was going to impact on my chances of TTC or carrying to full term, but my GP and consultant have both said there is no evidence to suggest it would.
My consultant was very thorough and went through all of the options, basically saying there is no right or wrong answer and it's very much a personal choice and dependant on where you're at in your life i.e if you have finished having a family then you might as well get it whipped out, if not then you might as well leave it if it's not painful.
He also explained the risk (albeit slight) of an emergency hysterectomy if the op to remove it caused heavy bleeding, as you mentioned, and that was enough to put me off considering it.
With regards to Esmya, it's a drug that blocks the effects of progesterone, so you can't take it while TTC.

Basically, my consultant reassured me that there is no reason for the fibroid to cause any problems with TTC and said he sees patients everyday that have fibroids (very large like mine) and are having healthy pregnancies and labours. Lots of women don't even discover they have fibroids until they go for a 12-week scan!

He did say, though, that if I was to fall pregnant the fibroid would definitely grow! Because of the rise in progesterone. So that makes me anxious, as I also feel self-conscious enough at the size it is. I seriously look about 4/5 months pregnant when I'm on my period, so goodness knows what I'd look like if I were to fall pregnant.

Anyway, I probably haven't helped much but I just wanted to say you're not alone! Although I can completely understand why you'd be worried and be questioning things. Hope things work out for you. smile

Hopefulbunny Wed 08-Mar-17 10:32:10

Hi ladies,

I am going in for surgery in a few days to have a hystoscopy and fibroid resection ( removal) slightly worried to say to say the least!

I went to my GP a few months ago after having a very long and heavy period. I was sent for blood tests which showed I had Anemia ( previously had been boarder line) I was then sent for a scan to check all was okay but it showed I had a 6cm submucosal fibroid, which I have sine learnt are the rarest fibroids and this is the type that bulge into the uterine cavity so can hugely impacted on conception.

I was then referred to a gynaecologist who went through my options. Because I wanted to ensure there there where no impacts on fertility the only really option was to go for surgery ( or could of done nothing).However I was offered medication to take for a few months to shrink the fibroid prior to surgery but I decided against it as it causes menopausal symptoms and for me it wasn't what I wanted. Of course the risk is that the operation could be more difficult so it's really a personal choice of what is best for you.

I am very worried about the surgery and any complications ( particuarly as its only a few days away until I'm having it done) but the anemia and heavy periods were having an impact so I'm glad I'm having it done. I hoping that it will improve my chances of ttc and that everything goes well.

I am hopeful that my overall health will improve.

I hope this had been of help. There is a very useful website called the fibroid trust.org.uk with loads of information.

Hope all goes well for you both. Let me know if you want any other information.

Apple78 Wed 08-Mar-17 21:15:59

Hi Bacon and Hopefulbunny,
Thank you so much for your responses. It is nice to know I'm not alone!

I am awaiting the results of an MRI scan which will hopefully show everything more clearly, and help me to reach a decision. My consultant said we need to check if the fibroid is posing any risks to my health, but also said that once they get so large she feels it's better to get them out! If I leave it, I just hope it doesn't continue to grow (I've read some can be the size of a football!!).

Hopefulbunny - good luck with your surgery. My consultant said she would not remove my fibroid without trying to shrink it first using medication, so if I did decide to go down the surgery route I'd need to be prepared to take the medication too. I hope you feel better after your surgery and I wish you a speedy recovery!

I hope everything works out for both of you. No doubt I'll be on here again (it feels quite therapeutic writing down my worries) and it would be lovely to hear how you get on. x

Hopefulbunny Mon 13-Mar-17 14:52:14

So my op was cancelled! I had to go for another scan and the consultant said the fibroid is not a submucosal as they had previously thought and that it is a subserous ( on the outside of uterus) so they cannot do a hyteroscopy to remove it , it will have to be laparoscopic myomectomy or open Myomectomy.

My op got cancelled by mistake but I was quite relieved as I wasn't ready to go in for such invasive surgery so soon. I am now waiting for the consultant to give me a new date which should be in a few weeks.The recovery time is a lot longer and I am very worried about having it done and I'm still not definitely sure ( need to read up some more) but I am thinking of the long term benefits. I have read that the location of Suberosal fibroid do not have nay impacts on periods or fertility, but my periods have definitely got heavier and caused me Anemia so I think it does depend on size and location. I was told mine is pushing in to the uterus so maybe that's why.

What type of fibroids do you both have and what are you planning to do?

Its such a difficult choice but I'm fairly confident that it will improve my health overall.

Bacon17 Mon 13-Mar-17 18:07:36

Hi Hopeful,

I had been meaning to reply to your earlier message and was wondering how you'd got on. It sounds like it's been a bit of a rollercoaster for you. It sounds as though it was a good thing it was cancelled, as now they have confirmed the correct location, plus it gives you more to time to think/prepare for the op. If you feel it's going to improve your overall heath and wellbeing then that's a good reason to have it done. And I completely understand wanting to have it out so you have peace of mind that things are back to normal in there.

Mine is Subserosal and is growing on the top right side of my uterus. I can feel it most of the time now and when I need the loo, it really protrudes as it's pushing on my bladder. My periods are heavier, but I'm not anaemic and they're not painful, so I can manage them fine at the moment.

It really is such a personal choice how to treat them, and obviously depends on how they impact your life/health day-to-day. For me, it doesn't cause any serious problems (touch wood) and the risks (very slight) of the op outweigh the discomfort at the moment. But I'm naturally very anxious about it, because it's something growing inside me that shouldn't be there! It's a weird feeling. I'm also really nervous about what will happen if I get pregnant, as I already know that will cause it to get bigger. And at 15cm it's already pretty huge! I've only been TTC for a couple of months, so I'm not at the stage yet where I'm questioning if it's affecting my fertility. And although all research suggests fibroids don't have an impact, you can't help but wonder.

All that said, my consultant told me about another patient he has that has a fibroid exactly the same location and size as mine and she has just had her first baby with no complications. She is now taking the drugs to shrink it before she TTC#2 and then she's going to have it out after that. So that gave me hope! Although I'm very aware every single woman is different.

Do you mind me asking if you already have children Hopeful?

Have you had any more news Apple? I hope it's positive, if so. I agree that it is very therapeutic to share thoughts on this! It's comforting to know that it's not just me with this giant thing causing a nuisance, especially when TTC.

x

Hopefulbunny Mon 13-Mar-17 19:59:56

Bacon, nice to hear from you. Its definitely good to share thoughts on this as I have been searching the web for information and experiences from others. When I thought it was a submucosal fibroid all the research showed that it was that was the type of fibroid that impacts on fertility and causes heavy periods so I was happy to go for the surgery. With subersosal fibroids the information I've read says that it shouldn't have these impacts. ( I also have a smaller intramural fibroid) However as I mentioned earlier I think it does all depend on size and location and I read that some fibroids have the same components as others , I presume that means that whilst they are on the outside if they push in they could cause the same problems as a fibroid within the uterus.

I guess my dilemma is what if I have the op and there is complications. But then I also worry that by leaving it, it will get bigger and heavy periods will worsen. I also think in some ways that I can manage the symptoms but then I am taking medication iron tablets and really I can't continue to take them forever and Anemia it's self can get quite serious, so I am considering all of this information.

I don't have any children.

I am 35 so age is not on my side with regards to fertility.

Having the operation will mean I would have to wait 3 months before ttc.

I would be very interested to hear more from both of you as its very helpful.

Apple78 Mon 13-Mar-17 21:13:47

It's good to hear from both of you again.

Hopeful - it does sound like a good thing your op was cancelled as at least you know now what you're dealing with. I have spent hours and hours searching for information online hoping it will help me to make a decision, but like you say there isn't so much for people in our situation.

My fibroid is also subserosal on the top of my uterus. I had no symptoms whatsoever when I first discovered it 17 months ago, apart from I could feel a lump when lying down. My GP sent me for an urgent ultrasound in case it was anything sinister and they told me there and then that they could see a large fibroid. My GP then wrote to a consultant for advice (but didn't refer me); he wrote back saying that a fibroid of this type is unlikely to affect fertility and he would only recommend treatment if it was causing painful or heavy periods. He did write that there is a higher risk of miscarriage and pre-term labour in ladies with fibroids, but said these increased risks tend to be associated with fibroids which are in the uterine cavity. So, although this worried me, I had no problems with my periods or any pain so we decided we'd go ahead with TTC as planned.

I got pregnant the first month of trying and I did have some pain from time to time, which I can only assume was the fibroid. I wasn't overly concerned as I'd done my research and was prepared for pain, anticipating that red degeneration might occur. I miscarried at eight weeks, and went straight back to my GP anxious that it was something to do with the fibroid. My GP said she thought it was very unlikely but referred me to a consultant. An ultrasound showed that I still had one large fibroid and it was around the same size and the consultant said she didn't think it was linked to the miscarriage. She recommended removal by open myomectomy but did say that she is a surgeon so would always recommend surgery! I had done my research and wasn't sure it was the right choice for me (due to the risks) so I said I wanted to think about it. The consultant then recommended an MRI to see the arteries/veins to the fibroid as she said embolisation might be possible. However, I am not keen on this at all as most of the research I've done indicates that this treatment is not suitable for women who want to retain their fertility.

Has embolisation been mentioned to you at all Bacon? Having done some further research this weekend it seems the risks of embolisation are the same, if not greater, than with the myomectomy. I think I would opt for the myomectomy over the embolisation if I do decide the fibroid should be removed.

I am still waiting for an appointment to find out the results of the MRI scan. I definitely will be discussing periods with the consultant though - I am on day 12 of my period today!! I have mentioned long/heavy periods at my previous appointments and they don't seem to be able to tell me why my fibroid would cause this problem. At the last ultrasound there was smooth "normal" tissue between the fibroid and uterine cavity, so no reason why the fibroid would cause abnormal bleeding. Hopeful - I too am anaemic and have been prescribed iron tablets by my GP so I am wondering whether I have reached the point where I should do something about the fibroid. I keep wondering whether I have some sort of hormone inbalance that is causing the heavy/long periods and the fibroid to grow (it feels like it is getting bigger) but, unfortunately, the NHS aren't able to offer any testing to look into this. Out of interest, have either of you been offered any hormone tests?

Do either of you find you need to go to loo more frequently? I am finding I have to get up in the night and very rarely had to before.

Bacon - it's really interesting to hear about success story of the lady who just had a baby and that she is taking the drugs to shrink her fibroid.

I am leaning towards starting with the least invasive method of treating the fibroid, so depending on what the MRI shows I am thinking I might try the drugs for a while and then TTC. It would give my body a bit of time to recover from the anaemia and hopefully "reset" my hormones to sort out my periods! It would mean having to delay TTC for a while.

Hopeful - it's interesting you were told you could TTC three months after the op. The consultant I am seeing told me she would advise us to wait 12 months! That was another thing that put me off having the op!

I know what you mean, Bacon about it being a weird feeling about having something growing inside. I have had to stop wearing some of my clothes as they're too tight or make me look really pregnant! Again, I suppose that could be another reason to have treatment but my number one priority at the moment is TTC so I keep thinking I can put up with everything else.

Please keep sharing. It's really helpful to hear from you. x

Hopefulbunny Mon 13-Mar-17 21:46:51

I was offered medication to shrink the fibroids prior to having the operation but decided against it as I didn't want my cycles messed up as I am also a regular 28 days and didn't want anything to mess that up. I also read online that a lady cycle didn't return to normal cycle even after a year of stopping taking the medication. I was also concerned about how it would effect my mood and other risks of taking medication ( which I'm never keen off)

I know that it could make the op easier if I was to have the medication but I decided it wasn't for me.

My periods have definitely got heavier but it's a gradual change that happens over time so you don't also notice how much worse it had got and what is 'normal'

I have read about degeneration and other complications that can happen which concerns me. I have confirmed online from lots of sources that says you have to wait 3 months to ttc after open myomectomy.
My current consideration is do I continue to ttc whilst waiting for my op date?!

Apple,I read up on the embolislation but this is not recommended for ppl ttc because it can effect fertility, my consultant also told me that at my appointment.

I have had blood tests which I think showed hormones where okay.

Do you might saying what your ages are, it's always interesting to know where others are at and very useful to share as much information.

Apple78 Tue 14-Mar-17 20:31:50

Hi Hopeful,

I know what you mean about taking medication. Have you ever taken the contraceptive pill? I was on the combined pill for years and I sometimes wish I hadn't taken it as I worry that it could have contributed to the growth of my fibroid.

It's difficult to decide whether to continue TTC whilst you wait for the op but I think it's just a personal choice on what feels right for you. I had the same dilemma when I was referred to the consultant for investigations but we decided to continue TTC and still are now. What will be will be! I keep hoping I'll get pregnant and everything will work out but I am getting a bit concerned now about the time it's taking to get pregnant. I am coming up to 32 and feel like time is starting to tick.

Let me know what you decide to do. I will update you when I have more news.

lilyborderterrier Tue 14-Mar-17 20:51:48

Hi ladies I'm so glad to have stumbled on this recent post. I am currently and very luckily pregnant with my 2nd. I'm nearly 16 weeks and at my 1st scan they told me I have a 15 by 15cm subserosal ( I think fibroid) confused I had no idea no pain or heavy bleeding. No idea.
I have seen a consultant and am going for an MRI scan on 31st March. My consultant has told me the worst case scenarios to prepare me I think ! I am trying to keep positive and enjoy this much wanted pregnancy but it's scary. It's so hard dealing with this and knowing what might need to happen after I've had my baby. I just want the hideous thing out.

I'm sending hugs and positive vibes to you all xx I did use conceive lubricant gel bought from amazon and fell pregnant after 6 months ( I'm nearly 39).

X

lilyborderterrier Tue 14-Mar-17 20:56:20

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 ?

Apple78 Wed 15-Mar-17 20:03:52

Hi Lily ,

Thanks for joining us and congratulations on your pregnancy!

It is scary having something so big inside. It's strange how sometimes they cause symptoms and sometimes they don't. I guess it just depends on the location of the fibroid and the individual. I'm quite petite so I worry that there won't be space for a baby and the fibroid but then people have space for twins, so it would probably be fine.

I'm glad you're staying positive and I hope the consultant is able to reassure you after your MRI scan.

Let us know how you get on. Thinking of you and sending hugs. x

Hopefulbunny Wed 15-Mar-17 20:08:38

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.

Hopefulbunny Wed 22-Mar-17 12:33:32

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!

Bacon17 Wed 22-Mar-17 13:33:47

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! confused
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. smile

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