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Fibroids diagnosed - what happens next?

(20 Posts)
MotherOfShihTzus Wed 11-Sep-19 12:42:50

Hello,

I've been ttc for 19 months and am having all the fertility tests. Yesterday, what looked like a fibroid was discovered in my US pelvis. I've googled (big mistake!) and am now terrified I'm in the low percentage whose rumours aren't benign.

I have a follow up gynae consultant but that's a month away and I feel I need to know my options to stop the panic. Anyone have any experience of fibroids? Could this be what's causing my infertility? If so, would they likely remove it??

Any help would be much appreciated x

star1980 Wed 11-Sep-19 17:05:28

I have multiple large fibroids and it took me 31 months to conceive my first. The drs always said that because my fibroids were all on the outside of the uterus that they wouldn’t affect fertility and so were reluctant to remove them. They did say that if they are on the inside that that would affect fertility and they’d recommend removal.

I did have one failed IVF round (cancelled before egg collection) but then conceived spontaneously a few months later so I really don’t know whether the fibroids were the reason. As I said, the drs always said they weren’t but I wasn’t fully convinced!

I’ve never heard of a non benign fibroid and have googled fibroids A LOT over the years.

LillyLeaf Wed 11-Sep-19 18:39:35

I had one smallish fibroid and the IVF clinic wanted it removed before I started IVF. I think mainly because they wanted to give the IVF the best chance and the fibroid 'may' have been in the way.

Whatsnewpussyhat Wed 11-Sep-19 18:47:19

I have 2 large ones. Got PG quite quickly. They stretched as womb grew so luckily weren't in the way. Still there now.

physicskate Wed 11-Sep-19 19:08:36

For very few women, they are the primary reason for infertility (I heard the figure of 1-2% of infertile women bandied about somewhere). Position is absolutely key to whether they are a major issue or no issue at all.

Generally, they aren't removed as this can weaken the uterine wall. Obviously, his is different if they are the reason for infertility. If it's located at the fundus or submicosal, they may pose an issue. Otherwise, they don't seem to be an issue...

I had ivf to conceive my lg. The only thing they ever 'found' was a fibroid, but clomid caused it. Tbf, I only ever had three blood tests and a few scans before ivf, so very very few investigations. So who knows what was really wrong!

Wearenotyourkind Wed 11-Sep-19 19:30:42

Hi - I've had 2 surgeries to remove fibroids. My gynae consultant didn't seem to think they would effect my fertility, but they needed to be removed due to the heavy bleeding etc. Now I've recovered from 2nd surgery, we are in a position to TTC, so hoping all is "normal".

MotherOfShihTzus Thu 12-Sep-19 10:55:33

Thank you all - this is so helpful!! I almost want it to be the cause of the infertility so there's something to work on. I will have to wait and see what consultant says next month as there are lots of diff potential angles based on the breadth of responses. It's good to know what the potential next steps might be so I can consider carefully before the appt.

@star1980 so glad you managed to conceive! This gives me hope smile

@LillyLeaf I hope you've recovered well. Was this recently? Have you managed to conceive?

@Whatsnewpussyhat I'm happy they weren't an issue for you and you managed to conceive smile

@physicskate lots of useful info! I'm glad you managed to conceive smile was it clomid that worked for you? Before the fibroid that was my anticipated next step.

@Wearenotyourkind best of luck for your next phase of ttc! And I'm hoping that the heavy bleeding subsided for you too smile I weirdly don't have heavy bleeds, so not conducive to fibroid symptoms. I may well need more investigation work.

physicskate Thu 12-Sep-19 16:29:09

No. Clomid didn't work for me. Pretty sure I already ovulated but just had slightly irregular cycles (28-39 days). I think it was just to buy time... my first cycle of clomid I had ovulation tracking and they said, oh you seem to have a teeny tiny fibroid, I can barely see it. There had been no mention of one at my pre-clomid scan.

I had six cycles of clomid. By the time we got to ivf about 8 months later, it was almost 4 cm... so not large, but not so teeny tiny any more.

LillyLeaf Thu 12-Sep-19 19:53:21

I had the fibroid removed last August and started IVF last November so didn't really give it much chance to see if it made a difference. I've been pregnant twice with IVF but miscarried both times.

MOGMOGMOG85 Fri 17-Jan-20 19:13:29

Hi everyone - I know it's an old thread, but it's the most recent thing that's been relevant to me and so I just wanted to check in on how all of you are doing? I'd love to see some positive stories. I started ttc for my 1st in April 2018. After a year of trying with no luck I went for all the blood tests, my hormones are good and I have regular cycles and ovulate so no issues there. I then went for an ultrasound and they discovered fibroids. I saw the word "bulky" used on one of my notes but no-one told me anything else. I was booked in for a specialist scan a few months later. In the mean time my partner had his sperm test - during that month we had to abstain for his test so we only dtd 3 times and I assumed it was a wasted month in terms of trying. Anyway before his results came back (6% which sounds scary but is normal apparently) I found out I was pregnant. This was July last year and our 16th month of trying. My specialist scan got cancelled automatically because I conceived. Anyway I paid for an early scan at 8 weeks because I was anxious and they couldn't see anything because of the fibroids. They couldn't locate the pregnancy and I was in and out of hospital over the next few days in case it was ectopic. Eventually they located the embryo in the womb, but it was only measuring 6 weeks. Over the following weeks it was confirmed as MMC and I miscarried naturally at 11 weeks, although I bled heavily and ended up in hospital where they gave me the drugs orally, but it didn't do much as I'd pretty much completed by that point. So... we've been trying for 4 months again. I still don't know how many fibroids I have or where they are. I know I have at least 1 measuring between 5 and 7cm. And potentially multiple others. The nurses at the hospital reassured me that although fibroids can affect implantation, I did implant and that is a good thing. I am trying to hold onto that but I can't describe how devastated I've been since the miscarriage and how hard I am now finding it every month to try again. I know I'm not alone as I see other people online go through so much worse, but it just feels like I am sometimes - none of my friends have had problems and everyone is getting pregnant/giving birth around me. We moved to a new county last summer and I'm only just at the start of getting to know people here, and I feel like my pregnant and new parent friends are avoiding me since the miscarriage. I realise they probably have their own worries and problems but I feel so isolated at the moment. Desperately trying to stay positive but in honesty I'm struggling so much the last few months and knowing that stress makes fertility worse doesn't help! If anyone on the thread doesn't mind it being resurrected I would love to hear how things are going for some of you since September. @LillyLeaf hope things are going ok with you? @Wearenotyourkind how is your trying working out? @MotherOfShihTzus how are things? @star1980 @Whatsnewpussyhat thanks for your positive stories - star that is a long time ttc i'm so glad it worked out for you - how did you stay sane if you can remember? xx

Apples1979 Mon 20-Jan-20 22:22:20

Hi, my fiance & I have been trying for over 2 years with no success & recently been told I have fibroids which is the cause. I have multiple fibroids with one 5-7cm at the front of my uterus. My fiance already has a daughter from a previous relationship so we won't get ivf on the nhs & we can't afford it privately. The doctor told me the negatives of having them removed & now I'm petrified it'll end in a hysterectomy & any chance of me getting pregnant. Like you MOGMOGMOG85 I am trying to stay positive but it's extremely difficult as both our brothers are expecting, as well as our neighbour. I guess I'm just hoping to hear similar stories with a happy ending to give me hope. I wish you all well xx

star1980 Tue 21-Jan-20 15:46:42

Hi @MOGMOGMOG85 and @Apples1979 I’m so sorry you’re going through this, I know how hard it is. I feel like there’s so much conflicting advice on fibroids and I was convinced that my fibroids (at least 4 and a couple large at 7cm and 9cm) caused our struggle to conceive. However, the drs at the fertility clinic weren’t so sure and said with them being outside the uterus the evidence isn’t clear on how they affect fertility and so they wouldn’t advise removal as there’s a risk of bleeding leading to hysterectomy (which of causes terrified me!) They also seemed to have no qualms with going ahead with ivf without removing the fibroids, but that felt experimental to me - like it was more to see if we were making any/good embryos as my DH had fluctuating but generally poor sperm quality.

You ask how I got through those years - I joined a couple of threads on the infertility board here where I could be completely honest about how I was feeling as none of my friends fully understood how I felt and they were all getting pregnant and having babies with ease. That really helped. I know a lot of people with fibroids who have managed to have children - with or without treatment, so it can happen, but that’s not helpful when you’re in the throes of it. Just keep trying, look after yourself and take some solace in the fact that you have conceived before, that is a very very good sign.

I have my fingers crossed for you both. flowers

Wearenotyourkind Wed 22-Jan-20 18:53:13

So sorry to hear about the difficult journey you've been on @MOGMOGMOG85. I had 2 surgeries to remove the fibroids hysteroscopically. We are on cycle #6 of TTC. Still trying to stay positive like you, but I also really do understand how hard this can be. I seem to know at least 4-5 people at once who are expecting and it just doesn't feel fair sometimes. There's always ladies on here who understand what you're going through, even if there isn't in real life, so please don't feel alone.

Starryeyes1984 Thu 23-Jan-20 16:44:30

So sorry to hear what you've been through MOGMOG. It's so hard for some people and easy for others. I'm sorry that you feel isolated, that makes things so much worse. If you have a few friends/family members that you can lean on for support then do, they won't mind! Infertility and miscarriage are a nightmare and not something anyone should suffer through alone.

I was diagnosed with premature ovarian failure when I was 33 after about 18 months TTC but I'm convinced I've been perimenopausal since I was about 29 in hindsight so I had pretty much no chance. I went abroad to have egg donor IVF and the clinic were really unhappy about my fibroids even though the NHS didn't seem that bothered by them. My uterus was also described as bulky, biggest fibroid being about 5cm and intramural. Surgery wasn't recommended as it wasn't impacting the endometrium but the Spanish clinic made me do 3 months of prostap (induces chemical menopause) to shrink the fibroids before starting IVF and even then they downgraded my chances of success, declined me on their pregnancy guarantee scheme and warned me about increased chances of miscarriage or pre-term labour. It was really daunting and deflating to feel like there was just one problem after another. The NHS consultant was a bit meh about the fibroids. She said there was some evidence about larger ones impacting fertility but it does sound like it's about location and impact on endometrium. In the end I got extremely lucky and got pregnant on my first IVF attempt despite all the fibroid doom and gloom. I've spent literally the whole pregnancy so far worrying about the fibroid impacting things but I'm starting to relax now as I've got past 28 weeks. Doctors still say there's a chance of pre term labour because of the fibroid. My impression is that fibroids can impact fertility but for most women they aren't that big a deal and will not be an absolute barrier to pregnancy. Please try to stay positive.

MOGMOGMOG85 Thu 23-Jan-20 17:46:49

Hi everyone,

Thank you so much for all your lovely comments and stories - I can't tell you how nice it is to hear from people who are/have been on a similar journey.

@Apples1979 that sounds really tough. It really takes over your life doesn't it, and that awful sinking feeling you get every month, and every time you hear about someone else falling pregnant sad I actually think it's a travesty the rules on IVF.. some areas offer no cycles even if both are childless :'( it's ridiculous and doesn't take into account at all the emotional impact of infertility on people. I hope you've managed to take some comfort from some of the more positive stories on here - I think fibroids causing total infertility is rare, and it took star a long long time, and me also to conceive that first time. I'm really hoping that we start to get positive endings to this struggle for all of us in the same boat. Do you know what type of fibroids you have? I'm waiting to be referred for that scan to find out more atm but have between 1 and 3 large ones 5cm ish - i think they are near the back of my womb and not protruding into womb(this would make sense as I am uncomfortable when going no. 2 sometimes) - might have one near cervix too. its all a waiting game to get referred atm and i've got my 35th birthday fast approaching. Doing ov strips this month as I'm worried my period has been much lighter in colour since the MC.

@star1980 thank you so much for your lovely reply. I am already taking solace in this community. So can I ask did you conceive through IVF then? I didn't think IVF was a viable option b/c assumed my womb was the problem. We haven't had full exploration yet though..

@Wearenotyourkind hi - ah i'm really crossing my fingers for you! it must feel all the more fraught waiting to see if the surgery has helped.. how long did you have to wait to recover from the surgery? And has it changed your cycle at all? xx

@Starryeyes1984 wow what a journey you've been on, and congrats x1million on your pregnancy! That's amazing that you went through all that and then it was so easy with IVF! Makes me wonder if I should look into trying IVF or finding out more - I assumed it would be a low chance if there was a problem with the womb - guess I have to find out more about my fibroids first. 28 weeks sounds great - I feel like its all going to be ok for you smile i've been doing a lot of reading (on here) about pregnancy with fibroids - have you been advised whether you will need an elective c-section or are they not sure yet? I also read about some drugs they might give you after birth to shrink the womb down/expell the placenta or something? It does sound like a lot more things to think about, but there seem to be so many positive stories of it not causing a problem at all. I'm so excited for you smile xx

Starryeyes1984 Thu 23-Jan-20 19:53:44

Thanks MOGMOG. It's been a rollercoaster but it will be worth it in the end. They initially said maybe an elective c-section would be necessary cause of the fibroid location but at the last scan they decided maybe it'll be fine and I should try naturally. I'm having more frequent scans and they'll decide nearer the time whether it's safe to deliver naturally. The doctor also said I could bleed more during labour so that's obviously something to look forward to!

There is a lot to think about and seemingly endless things to try during this fertility journey. I was super impatient but basically loads of blockers got put in my way before I could actually start IVF and with the benefit of hindsight I'm glad I had that additional time to really think things through and come to terms with the loss of my own eggs before I moved on to donor eggs. Good luck to everyone.

star1980 Mon 03-Feb-20 03:20:10

Hi @MOGMOGMOG85 in the end I conceived naturally. I did one ivf round that was cancelled before egg collection - because of overstimulation, nothing to do with fibroids. I didn’t think ivf was sensible without removing the fibroids first but my consultant wasn’t concerned about them and I have now had two babies so he was probably right.

Oct18mummy Mon 03-Feb-20 03:53:43

I didn’t know I had fibroids till I had a private scan at about 16 weeks pregnant. I have 6 around 3cm each. Was such a surprise and it did take us just over a year to become pregnant. I do wonder if the fibroids are all over the womb in my case if the embryos were struggling to attach to my womb. They had to watch during my pregnancy incase they grew or restricted the birth canal and would mean elective c section. I hope that it all works out for you all.

JolieOBrien Mon 03-Feb-20 03:54:47

@MotherOfShihTzus

I think Fern Britton had a large fibroid when she was pregnant with her last child. She went on to have a healthy baby girl but I think she had a bit of pain from it during the pregnancy.

MOGMOGMOG85 Mon 03-Feb-20 20:22:40

Hi @star1980 and @Oct18mummy - thank you for your positive stories. I am starting to conclude that fibroids probably do mean it takes longer to implant, but that it's probably not totally impossible. I mean - I did implant already last summer, so it wasn't impossible then, I just need to keep the hope alive. All the waiting, the heartache, and the total lack of control is so difficult.. but I realise in a way that I was lucky to be pregnant at all, even though it's such an empty feeling now I'm not and desperately want it again sad

I think I have lots, and around 2 that are large (5-7cm so on the smaller side of large but still not great), or that was the case when I was pregnant - I've heard they can shrink I do hope that is the case. I bled heavily during the miscarriage and had to go to hospital - I'm wondering if that might have been related to the little blighters (the bleeding not the miscarriage).

They don't give me any symptoms, although since the miscarriage I do feel that I have had some very mild pain when going to the toilet, and sometimes just feel aware of something in there if that makes sense...

I'm trying to relax about them, but it's hard when you're not getting the results you want xxx

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