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Original poster

TTC with large 10cm fibroid

60 replies

Apple78 · 05/03/2017 10:53

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.

OP posts:
New posts on this thread. Refresh page
Original poster
Apple78 · 17/06/2018 18:53

Hi all

I'm sorry it's taken me so long to get back on here!

Hopeful, I'm really sorry to hear of your loss and I hope you get a BFP very soon.

Bacon, I'm sorry you haven't had a BFP yet but keep going. I know it's not easy but I think if you can stay positive it will help.

I am fully recovered from my op now and feeling so much better. I'm really glad I had the op, but the fibroid was really impacting on my life so it was definitely time to do something about it. I was in hospital for a week but I wouldn't say it was really painful - more just uncomfortable. Unfortunately the embolisation wasn't very successful so I bled a lot during the surgery to remove the fibroid, but the surgeon did a brilliant job. I had to have a vertical cut but it healed well. I was off work for almost three months but the time went really quickly. At first I was mostly sleeping all the time anyway.

My stomach was flat straight away after the op and I felt like I should have done it sooner. I feel so much more confident going out and about now. My periods are also much shorter and lighter which is great! I realise now how much I was putting up with before.

I am waiting for a follow up scan/appointment to check everything looks ok and then we should be able to get on with TTC!

Thanks for keeping the thread going. It's lovely to hear from you. x

OP posts:
KentUnicorn · 31/05/2018 11:50

Hi
Not sure if you are still reading this thread but thought I would add my experience. I had several fibriods, and they were not able to surgically remove them and not impact fertility. I took a course of Esmya and fell pregnant very soon after and my LO is now 1 year old. I think the pregnancy improved my fibriods as symptoms have improve and we are now trying for another baby. I would certainly be an advocate for Esmya Smile

Bacon17 · 30/05/2018 14:52

Hi Hopeful

Thanks for keeping this thread alive!
I'm okay thank you. Still TTC without any luck and still incubating a huge fibroid! Had several scans and bloods etc done over the past six months and have been referred to a fertility clinic for more investigations and potentially IVF. So far everyone has said it's not the fibroid causing the problem, but I have my doubts. It's all just so frustrating and disheartening. Just trying hard to stay positive as the months go by (and the older I get!).

How are you getting on? Really hope things have been better at your end .

x

Hopefulbunny · 13/05/2018 15:41

How are you ladies, hope you are all okay.

Hopefulbunny · 26/01/2018 19:14

Hi Bacon,

Thank you for your message very sweet of you.
I'm okay, I was keeping positive that it would happen again quite quickly because they say your more fertile after miscarriage but AF arrived today, on day 29 instead of 27 which is my usual cycle.

I'm trying to stay positive but at 36 I wan't to know it can happen!

How are you? are you having any treatment for fibroid?

Apple - hoping your op went well would really like to hear how you are, hope all is okay.

Bacon17 · 24/01/2018 17:39

Hi Hopeful,

I'm so sorry - I have only just seen your post! I don't seem to be getting alerts and assumed I would if there'd been a reply.
I am so sorry for your loss, I really hope you're feeling okay and that it was too awful. Flowers
As you say, it's good to know that you can get a BFP and there is nothing to say that it won't happen again very soon for you.

Sending you lots of luck for another BFP. Smile

Hopefulbunny · 02/12/2017 14:27

Hi Bacon,

Thank you for your message. Unfortunately I’ve had a very early miscarriage.I’m now bleeding and all tests are showing negative. I feel very flat now it’s all over but In another way though I’m glad I can get a BFP.

Hope you are okay.

Bacon17 · 30/11/2017 17:59

Sorry Hopeful, I've just seen your message.

Sorry to hear the tests are leaving you confused/worried. If CB test is still showing 1-2 weeks then that's good. Try and focus on that outcome. Try to remain calm, as you say, and just take each day as it comes. Perhaps leave it a few days if you can and then test again for peace of mind.

I'm keeping everything crossed for you. Smile

Hopefulbunny · 29/11/2017 19:51

Hi Bacon,

Thank you for your lovely message.

I'm glad to hear your fibroid hasn't grown and I completely understand what you mean about worrying about the impacts on fertility. Hopefully the others tests can provide some reassurance.

So I did another frer in the early hours this morning and it is fainter than Mondays but CB is still showing 1-2 weeks but then my Clear blue advance monitor is now saying I'm not when It showed a definite on Monday.
I'm not sure I might be having a miscarriage I have absolutely no idea need to try and not test an remain calm!

Nice to hear from you.

Bacon17 · 27/11/2017 19:13

Hi Hopeful

Just seen your update and wanted to say a huge congratulations on your BFP! That's amazing news and so good to hear after everything you've been through. Keeping everything crossed for you that it all goes well. I bet you can't believe it!

I'm still TTC to no avail and have had more scans and tests. My fibroid hasn't grown, which is something, but it's already massive anyway! I'm having a HSG soon to see if it's leaning on my tubes, which I fear it might be. I keep being told by the consultants that it shouldn't be impacting on my fertility because of where it is, but as the months go by I believe them less.

Anyway, so happy to hear your good news.

Wishing you all the best for your op, too Apple, really hope it all goes well and that you feel much better for it once you've recovered.

Flowers
Hopefulbunny · 27/11/2017 14:28

Hi Apple,

I'm glad you have date for your op you may have had it already by now?
I hope it all goes well for you.

I had a scan because I was getting pains following the surgery so they requested one to check all was okay and the lady said it all looked very healthy! so I had another follow up recently and because of my high prolactin the consultant said they need to check macroprolactin levels ( these don't matter apparently but they have to work it out separately to see if still high) and if the prolactin is still high I would need referral to endocrinologist to have and might have to go on medication to reduce levels because it can impact on fertility. So I'm still waiting for the blood test results to see if I will need a referral. In the mean while AF was almost 3 days late ( have been 27 days recently to the book! ) so thought I would test because i got my self worried I was going through the menopause and would you believe it I got a bfp!!!!!

Very early days so taking things slow but very much in shock.

Would be lovely to hear from you all hope you are all well.

Original poster
Apple78 · 16/11/2017 11:59

Hi Hopefulbunny. It's lovely to hear from you and I'm glad you're doing well and fibroid free! It must feel great!

I finally have a date for my op (embolisation plus open myomectomy). Going in at the end of this month. I can't wait as it feels like it's been such a long journey and I just want to get it over with now and move on.

Do you know if they normally do a scan post-op or was yours only because you were still getting some pain? It seems like a good idea to have one to check everything looks ok, but from what I can gather I don't think they usually do it.

I am feeling a bit nervous about going in hospital, but the overriding feeling is relief that I've made a decision and am getting the op over and done with! I can't wait not to look pregnant anymore. I've made a checklist (it's like going on holiday!) and feel quite prepared. I've told work to expect not to see me for 8-12 weeks but I really don't know what to expect pain wise afterwards. The surgeon won't know until they open me up whether an incision into the uterus is needed. I hope not, as it will make healing easier. They still think a vertical scar is likely too, but can't say for sure until the day either as the surgeon will have a good feel of the fibroid once I'm under the anesthetic.

I really hope we don't have to wait 12 months afterwards to TTC but that's what the surgeon has said. I read a study online that was carried out in Japan where they said the results showed that the uterus was fully healed three months after a myomectomy. I suppose it depends on the individual and what was actually involved in the surgery. Fingers crossed I will heal quickly but if they don't do a scan or anything post op then I don't know if they will actually know when I have healed.

Hope everyone else is well. x

OP posts:
Hopefulbunny · 13/11/2017 13:40

Hi Ladies,

I've been meaning to post for a while, how are you all?

Apple, have you got your date for your op yet? I definitely agree that the recovery can be up to 12 weeks it certainly was for me. You make very quick progress straight after the op but then you go onto further stages of the recovery if that makes sense. You can easily think you have fully recovered sooner but you will find that you feel quite tired so it really is best to rest as much as you can.

Nothing new for me other than I have another post op follow up which I will discuss my high prolactin. I've had a scan and all seemed really good , with no new fibroids! I've also had day 3 and 21 bloods done and it shows I'm ovulating so very pleased about that. My iron levels seem to have returned to normal now so the op obviously resolved that problem.

Hope you are all well would be lovely to hear how you are all getting on.

Original poster
Apple78 · 25/09/2017 15:11

Hi ladies

How is everyone getting on?

I went to see the consultant radiologist to discuss embolisation prior to surgery and I was glad I went. For an NHS appointment I had plenty of time (was in there almost an hour!) and had plenty of opportunity to ask questions and discuss my concerns. The consultant examined me and thinks my fibroid has grown since the MRI scan (March). I can tell myself it has as I feel very big and bloated. Anyway, after much discussion and going over the pros and cons, I have decided I will have embolisation the day before the surgery. The consultant said that because they know I'll be having the surgery the next day to remove the fibroid, they won't try to kill if off completely with the embolisation, but will just do enough to reduce the blood flow to make the surgery less risky. Also, because they know I want to be able to get pregnant they will keep away from the ovarian artery and may use some sort of clips or something to stop 'backflow' of particles so they don't go where they shouldn't.

So, now I've decided on the course of action I'm just waiting for a date! I'll be going into hospital to have the embolisation with a local anesthetic and then staying in hospital overnight ready for the surgery the next day. I've been told it's likely the hospital stay will be around five nights and the recovery period 8-12 weeks.

The consultant said I'll have the op(s) this side of Christmas but couldn't tell me when. Now I've made my decision I just want it over with so hope the wait isn't too much longer!

Bacon - it does seem the advice on fibroids does seem to vary a lot and I was originally keen to leave mine and TTC, but it's now reached the point where I'm really self-conscious about it and feel very uncomfortable so something has to be done. In a way I wish I'd just opted for the surgery at the beginning as it would have been easier when the fibroid was smaller but I was hopeful that it wouldn't interfere with TTC and didn't expect it to get so massive!! I think it's worse because I'm petite and so it's very obvious and probably does take up a lot more space in my body than it would in a larger lady.

Hope you are all well. x

OP posts:
Hopefulbunny · 01/08/2017 20:51

Hi Ladies,

Bacon, nice to hear from you. Hope you see some improvements with reflexology let us know how you get on.

Godmother and Jgatz, hope you are recovering well have you had post op yet?

Hi Apple , that's frustrating that you are still waiting hopefully you will hear soon and get things sorted.

I've had my post op which was pretty useless really as i didn't get to see my surgeon and saw a lady who didn't seem to be able to get my medical reports up so couldn't give me any meaning advise on the queries I had. I'm still getting some pains post surgery so have been referred for another scan to see whats it is. I will then have another follow up app hopefully with my surgeon!

I'm ready to start ttcing now so will see what happens!

Original poster
Apple78 · 31/07/2017 21:41

Hi Bacon. It's good to hear from you.

I haven't had my appointment with the radiologist yet but have an ultrasound next week to check on the fibroid. I have finished the first three months of Esmya and am now on the month off. Coming off it has made me realise how uncomfortable I am with the fibroid. Whilst on the Esmya my tummy was still massive but I had no pain, no bloated feeling, no heaviness. The past couple of days I feel like I'm carrying a sack of potatoes around in my stomach and have back ache and hip pain! Two people have asked me in the past couple of weeks whether I'm pregnant. Not good!

Can't wait to get back on the Esmya whilst I make the decision on whether to have the embolisation or not. I have done some research and found some trials where they did embolisation prior to surgery and the women in the group who had the embolisation had a shorter op time, less bleeding and faster recovery. The trials were only in very small groups of women though. Yes Bacon, it was the same consultant as the other one has a ridiculously long NHS waiting list! I said I was worried about the embolisation causing permanent damage to the area, for example the ovary (as the blood supply feeds one of the ovaries and the fibroid), but the consultant said you can't do anything without a uterus but can still try to get pregnant with one ovary so I suppose she has a point!

I'll let you know what I decide after I've seen the radiologist. Let us know how you get on with the reflexology. What did the GP say about your fibroid?

Godmother - it's good to hear your cut has nearly all healed. How are you feeling in general?

Hopeful and jgatz - I hope you're both continuing to recover well.

OP posts:
GodMother78 · 11/07/2017 12:30

Hi Bacon17 I always say trust your body I always new when mine were growing and every time I had a scan it showed it had indeed grown.
I hope you get it sorted soon.

Bacon17 · 11/07/2017 10:51

Hi ladies,

Hope you are all doing well.

So sorry I've been very quiet lately! I've felt I've not really had much to report, but I've still been keeping up to date with all of your progress. It's really helpful to hear about your experiences, especially as the surgery can seem so daunting.

Hopeful I'm so pleased you are recovering well and are able to head gently back into work soon. I know it's been a long journey, but it must be a good feeling to know it will soon be all behind you and you can focus on a fibroid-free future!

Hi GodMother and Jgatz! I hope your recoveries are still going well and that you start to feel more back to normal with each day. You ladies are all so brave! I really hope your quality of life is much improved now that you don't have fibroids to contend with.

Apple - that's good that you could be able to have the surgery as soon as August/September. Is the consultant who is recommending the embolisation the same person who was recommending surgery in the first instance? I remember you said she was a little pushy. I agree with GodMother that it would be wise to get all the facts and second opinions on whether embolisation is needed, especially as it's worrying you. It seems odd that it wasn't mentioned to GodMother considering her fibroid was around the same size and has been successfully removed. It also hasn't been mentioned to me and mine is around the same size as yours. All cases are different, but don't feel pressured into anything - you've got to be completely comfortable with everything, it's your body and your future.
I really hope you get some answers/guidance from the radiologist. Let us know how you get on.

I'm convinced my fibroid is growing, as my tummy seems constantly bloated now, so I'm going back to the GP next week and to see my consultant again. I am also starting reflexology with a lady who specialises in working with ladies who have problems such as fibroids, endo etc. She seems to really know her stuff and has got some great results for people. I'm not daft and I know it's not going to make it disappear, but I'm really interested to try it and see if it helps in any way. I'll keep you posted!

Take care everyone. Smile

GodMother78 · 10/07/2017 23:08

Hi Apple78
Embolisation was not even mentioned as I was told myomectomy was the best option if I wanted a baby in the future. The injections that I had before my operation did nothing to be honest. I was supposed to have a c-section cut but as they did not shrink the cut was vertical right to the top of my belly button. The cut has nearly all healed apart from one little bit that is in a crease. I would honestly say look at all the literature about embolisation.

Original poster
Apple78 · 09/07/2017 16:05

Hi ladies

Hope you are all well. It's good to hear how you're getting on. How is it going back to work? I bet it's very tiring at first.

I got a letter through to see the consultant on the NHS but it isn't until November! I then got sent an appointment letter to see the other consultant so went back last week to discuss options. It seems there isn't much of a wait for surgery there compared to waiting six months for the other consultant. I could probably have it August/Sept but the consultant still wants me to consider embolisation in conjuction with the myomectomy due to the high risk of bleeding, so I'm waiting to see the consultant radiologist to discuss before confirming a date for my op. The Esmya doesn't seem to be shrinking the fibroid so far and I'm almost at the end of the first course. The consultant examined my tummy and said it's likely I'll need a vertical incision rather than a bikini line cut. I don't really mind from a cosmetic point of view, but it means the recovery period will be longer.

I should be able to see the consultant radiologist in the next six weeks and then make a decision on whether to have the embolisation the day before the surgery or not. I'm so confused as everything I've read says not to have embolisation if future fertility is desired but the consultant thinks that my fibroid is so large and the blood supply so complicated that embolisation would decrease the risk associated with a myomectomy for such a large fibroid. It's a difficult decision, but I'm hoping I'll feel better about making the choice after I've spoken to the radiologist.

Godmother - was embolisation ever mentioned to you due to the size of your largest fibroid?

Hope you are all doing ok.

OP posts:
GodMother78 · 07/07/2017 22:44

Hi Hopefulbunny I am recovering well still getting tired quite quickly but am getting there. I should be back at work in the next 2 weeks.
Hope your recovery is going well.

Hopefulbunny · 05/07/2017 18:47

Hi ladies how are you all getting on?

Godmother78, I think they all do the same but I had heard positive stuff about kelocote. I'm not keen on massaging as I'm very squeamish but i want it to get better so I will persevere with it! How are you finding everything else with your recovery.

Hope you are all well.

GodMother78 · 27/06/2017 19:45

Hi Hopefulbunny I am doing the same massaging the area around the scar. I will look for the kelocote i just bought bio oil as I thought that would work when healed.

Hopefulbunny · 24/06/2017 20:19

Hi Ladies,

Jgatz, glad your op went well, you have described everything I went through aswell,the first few days are so difficult moving aren't they and you feel so relieved to be able to walk again lol. It's good you got physio advice, I didn't get any advice from the hospital and didn't do any pelvic exercises so should probably start doing them although I am now walking alot further. In regards to the bloating, my stomach is still very bloated which is rather depressing but hope it will improve. I read that you should massage the area around the scar between
6 -12 weeks to help the area heal and get move movement around the skin to prevent problems occurring in the future. You say you feel okay now, but I also felt quite good in the first few weeks but then around the 3rd week I took a bit of a dip. I know, now you go through lots of different stages and you will experience new and different pains so you need to take it slow and take time to recover. You will also find that your energy levels are quite low when you start doing more so you need to rest, it is major surgery.

Apple78- I am going back to work in a few days but on a phased return, I have still been very tired so need to ease myself back in to normality! Hope you have an appointment now.

Godmother 78- Hope you are recovering well. I know what you mean about the scar I find that because my stomach is still bloated I have a bit of an overhang if you get what I mean! I seemed to have gained a few pounds since surgery but I'm trying not to worry about how it all looks because I suppose takes a while to go back to normal. I am using Kelocote scar gel which is supposed to be good and massaging the area which helps.

It would be lovely to hear from you all ladies.

GodMother78 · 20/06/2017 15:08

Glad your feeling well jgatz54 I hope your little walk was good. I was signed off for 4 weeks and told to come back if I thought I needed more time. One thing I don't like is my scare. Due to the size and the fact that they did't shrink even with the injections the cut was quite big. Now nearly 2 weeks post op getting around well still sore in certain parts. If my cycle has gone back to normal i should becoming on this week. I am dreading it I hope it's not to painful.