FIBROID

[Sesamechick]

Morning,

I don't have too many details now but I'm feeling really down. All I know is that I have a large fibroid which was first noted when I had my first scan with my now 7yr old. I had more scans throughout the years and it's only now since I had my early miss in April (TTC 2yrs) that they're saying my fibroid could be the cause of it infertility/miscarriage so I've been referred to Gynaecology.
Currently in my fertile week and I feel like saying F it. I feel so deflated 😭

Any success stories of falling pregnant with a fibroid and went on to have a healthy pregnancy and baby?

Thanks

I had a couple of fibroids. It depends where they are. If it's submucosal, as in it is in the cavity of your womb, then it can have a bigger impact on fertility. If it's outside your womb it shouldn't matter unless it's really big and causing other issues like pressure or bleeding. I had surgery to remove one inside my womb and one in the lining. They left one in there that was also in the lining (intermural I think it's called) and I'm 38 weeks pregnant and no issues with it. Removing some types can be pretty straight forward and they can just kind of hook it out through your cervix. I think something like 30% of women of childbearing age have fibroids and statistically most of those would have no issues. Can you speak to your doctor about it?

@CycleGirl20

Thanks so much for taking the time to respond.
I don't have the details as the GP said they need to pull up the results and will let me know 🙄 all the GP said is that "yes you have a large fibroid that may need removing as it may be the cause of your infertility and miscarriage. I'll refer you." I asked for details on the fibroid but she didn't have that information on hand but I have now requested it asap.
I believe it's 8cm across but that's all I know.
I don't understand why it wasn't recommended that I have it removed when it was first discovered. I feel so upset right now and that there is no hope. Not getting any younger and now to deal with this.
Hope you're feeling good. Not long to go for.you! X

I can imagine you feel upset about it, especially if you've only been given half information. I found out I had fibroids on a private scan which I paid for myself after a year of TTC with no luck. With fibroids, it does really depend where they are. I've seen many women on here say they had ones inside their uterus and had a successful pregnancy. I don't think they massively increase the risk of miscarriage. This study says not anyway pubmed.ncbi.nlm.nih.gov/28591761/. The doctor told me my left over one was behind placenta at one point and I've had no complications. I guess sometimes miscarriages just happen but I hate these kind of tit-bits of information given to you by doctors who don't have all of the info to give and just leave you worried.

I moved abroad before I got an NHS referral through and had mine removed in the other country. If you do have to have them removed, it's not too much to worry about. It can often be done through the cervix, depending on where they are, and then the recovery is pretty quick and easy. For mine they also had to go through my stomach and cut into my uterus (think tiny 1-2cm cut, not C-section) to remove one. Then I had 3-6 months down time for healing which I actually found pretty nice as it gave me a break from my 18 months of TTC. Then 3 months later I was pregnant. I was/am mid-30s so not got loads of time.

I hope you can get a referral through soon. A private scan could help to get more information if you can afford it/want to spend the money on that. The woman/doctor who did my private scan was very clued up on the impact of my fibroids on my fertility and the treatment I'd need. Wishing you all the best

@CycleGirl20
Thanks so much. Your message was really kind and helpful.
I am waiting for a call back from my GP so I can get more information on the fibroids placement and size, otherwise I'll have alot of chasing up to do! I do remember when I had an ultrasound on it (long story, I couldn't find my iud string; turns out the fibroid was covering it!) And I remember very clearly asking the consultant then if in the future if/when we decided to try for my kids if the fibroid would cause issues and she said no. That's what makes me confused as why all of a sudden I need surgery. It's also frustrating because I originally called my GP for the results and receptionist said all was normal. I made a telephone appointment on my own accord and first thing GP says is you need surgery. If I had listened to the receptionist I would have never known. So confused and upset!

I'm not concerned about having it removed if that is the case, I just would rather have it done asap. Did they tel you rest for 3-6months?

Thank you again for all the information and advice xxx

I have a lot of fiboids, the largest is 12cm. I’m currently five months pregnant. I talked a lot with my consultant before tying for a baby and he was reticent to remove them. Ahuge amount depends on where the fibroids are - I knew I would have to have a planned c section and consultant led Pregnancy but they didn’t cause issues conceiving.

@PandaOrLion
Oh wow thanks for sharing. I believe mine is 8cm but that's going on memory.
May I ask if it isn't too personal whether you're having a C-section due to the fibroids?

Hopefully I'll have some answers soon.
Thank you xx

@Sesamechick they had to cut the whole way through my womb to remove one of the fibroids. They did say I was quite unlucky in that regard. That meant I needed a 3-6 month down period so my womb could heal. They did a scan after 3 months and we started TTC again around 4.5/5 months.

I did actually have medical health cover through my work and it would have covered the surgery. We moved over seas before that came through though. Just mentioning in case you have anything like that. I had to say the fibroid was causing me pain and heavy periods.

It is rubbish they didn't pick it up. I think it's not always so clear with fibroids when they're an issue or not for fertility until you TTC and it doesn't work.

Hello :) I’m interested to find out whether you had any problems with your fibroids during pregnancy? As I am getting conflicting advice whether to remove my 10cm fibroid before TTC

No one can know because some fibroids grow and some shrink. I had a lot of scans during pregnancy and a planned section. It depends where the fibroids are too - only one of mine caused an issue in the pregnancy due to its location.

I used to work for NHS scheduling gynae surgery. We often had people booked for a planned c-section that were also to have fibroids removed during the same surgery.
So you absolutely can successfully conceive with fibroids, depending on their size / position.

This sounds so reassuring, I also read they can be removed during c section, but two gynaecologists I spoke to found the idea rather amusing and said they absolutely wouldn’t touch it!
Mine is posterior subserocal and it’s large 10cm, probably bigger now as my scan was nearly 3 months ago. I get extremely heavy periods. I know the wait for the surgery is long and we have been trying in the meantime but I don’t want to be reckless considering the risks. On the other hand the clock is ticking too. This has given me a fair bit of anxiety.

Hi Everyone, I’m really struggling to find info on this but im suffering from secondary infertility for the last 2 years. We started IVF. I had a small fibroid noted literally on my lining but not in the cavity. I did a fresh transfer in January which failed. Then when I can to do my frozen transfer a nurse called a consultant in to look at the “area”. They’ve said they still want to go ahead with the transfer but I can’t help but worry and feel negative like this is the issue!

the consultant said for removal it would be the c section open abdominal surgery and it’s 1cm. They said because of it being right on the lining I could cause myself more hassle and fertility issues but I can see above @CycleGirl20 has had success with this xxx

@Loz2467 I did have a fibroid removed that cut through the lining of my womb. It was nothing like a C-section though. That sounds ridiculous. I had 3 fibroids removed in one go and they were all done by laparoscopy meaning Keyhole. I have since had a successful pregnancy. I did still have one fibroid during my pregnancy and that was fairly unremarkable. That one was about 1cm and though the lining. I think it depends where they are in proximity to where the embryo might implant when they're so little. Lots of people have fibroids and most of them don't have problems.

Could you get a second option? Especially on the surgery. If the doctor who looked at your fibroid actually a doctor who operates on fibroids or was it the fertility doctor? If it wasn't a specialist, could you get a referral? Some of these fibroids can just kinda be hooked out vaginally under general anesthesia. You'd need a specialist to look at that. A tip - I also had a fairly basic private medical insurance through my work and discovered that I could get a referral and get it all covered by saying I had painful, heavier periods. Obviously I discussed my fertility with the specialist too in the meeting.

I had an open myomectomy but that was with 2 very large fibroids, about 9cm x 9cm and 5cm x 4cm. Not medical at all, but I'd be surprised if you'd need the same for a 1cm fibroid unless the location is tricky.

My largest had entered the main cavity of my uterus and the other was so close to the artery that all they could do was shave it down (by about half) to make sure there was no risk of hysterectomy.

@CycleGirl20 thank you so much for replying! This whole journey feels so lonely. 2 years of inferitlity after loosing our baby girl at 19 weeks has been hellish!

Thats interesting to hear they were able to leave the 1cm one for you. This was only 4mm in Jan 22 but after clomid and other hormones it’s now 1cm. It’s because of where it is. They’ve said they can’t access it through the lining :( that’s why they’ve said it’s super tricky! And it could cause more issues for my fertility. It can’t be removed via lap either but to be honest like you’ve said that’s from a fertility specialist. I’m in Manchester and I’ve googled fibroid specialist. I too have a private healthcare via AXA and was hoping to use those and do the same thing! Because to be honest since my miscarriage - well starting 6 months after my loss I started getting a whole week of brown spotting before my peri and after. Which isn’t normal! I’ve been diagnosed with adenomyosis which is worst than endo as it can’t be removed.

@Loz2467 I'm sorry for your loss.

It could well be that yours isn't an issue, but absolutely use your AXA! My left on one grew quickly in pregnancy. I think it was 3cm when I had my baby. No idea what it is now.

I guess I'm an example of stuff fibroids causing problems and some not

@ConfusedGin Thank you for replying. Did you see a specialist? Or did that come from a fertility dr? That’s what it is. The placement. It’s like on the lining and almost on the scan looks like it goes into the cavity but I’ve had a hyterscopy and it wasn’t seen? But it was only 4mm then.

Im considering getting a Refferal from my insurance and getting another opinion.

@CycleGirl20 to be honest I do think it’s what’s causing the problems. It seems odd to get pregnant naturally twice and then nothing 😢 for 2 years! Then a whole bunch of spotting issues too. The down Reg I was on for my adeno usually shrinks the fibroid but it didn’t. I just don’t know I’m kind of loosing the will after years of this.

@CycleGirl20 and congrats on your successful pregnancy! Xx

My treatment was all done by NHS gynaecology, so it was slow but it was effective.

I wasn't trying to conceive before my fibroids. They were causing really heavy periods and affecting my day to day life, so they had to be dealt with. The shaving down of the one near my artery was to not risk the womb or impact later fertility.

The consultant didn't forsee any fertility issues but as they had to enter the uterus due to how the big one had grown, I have been told I would need a c section for any pregnancies I may hopefully have. The recovery from the op, which was in the end very similar to a c section, was fine, so it doesn't faze me as much as an emergency section might.

@ConfusedGin the recovery sounds tough but good that your protecting your future fertility. Apparently they aren’t letting me have the open abdominal surgery because of where it’s situated.

@CycleGirl20 as expected my second IVF transfer failed. It literally messes with my head so much after 2 natural pregnancies - second one lost at 19 weeks. Like how does this even happen. I knew my periods changed after my loss and hence that’s when the adeno started. I wonder if it’s a fibroid or a patch of adenomyosis that’s in the “margin” of my lining apparently but not in the cavity. It’s stressing me out because nothing can be done about it and maybe I’ve just wasted a ton of money on IVF that won’t work because of this area. Or maybe it’s other things stopping the IVF from working :(

@Loz2467 I'm really sorry that you're I've didn't work this time. That must be really hard. Make sure you take care of yourself.

It's really hard to know if it's related to the fibroid. In your position, I would try to see another specialist. I would also be following up on other possible causes though. I read a few studies on fibroids when I was having mine treated and statistically speaking, a small number of small fibroids are far less likely to affect fertility. I'd follow up other possibilities just to keep things open.

I believe you can also take medication to shrink a fibroid. It was never offered to me, but that could also be worth trying to find out about.

Wishing you the best of luck!