Fertility journey with fibroids - Fertility Network UK

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Fertility journey with fibroids

Aquaharmony profile image
5 Replies

I wanted to share my journey so far as despite how common they are I haven't seen too much discussion on fibroids and fertility here. I have found the messages shared on here so helpful as my knowledge has been limited and most of my journey has been impacted by the added complication of Covid. I spent a long time trying to get clarity on whether my fibroids were impacting my fertility and effectively got timed out of NHS fertility options due to ageing out while waiting for referrals over several years. I opted to do IVF privately ahead of an open myomectomy which I am currently recovering from. I only did one round which produced 4 eggs and 2 made it o frozen embryos.

I was advised my womb effectively was completely compressed by uterine fibroids but my AMH was good for my age so we are gambling on trying naturally at least initially once I am cleared to start trying in around 3 months hopefully with a back up if needed.

My surgery resulted the removal of over 10 substantial sized fibroids but I haven't been given too much detail as this was lal no the NHS.

I am now focusing on recovery and want to make the most of the window the surgery has given me but being over 40 would be grateful for any advice around recovery and preparing to try naturally with my partner as well as thoughts on further ivf. I am very active so recovery is pretty frustrating but I don't want to do anything to delay things. I feel like everyone is really knowledgeable on here and I am just learning as I go. I initially overdid it when got home from the hospital so I want to make sure I get the balance right.

Thanks

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Aquaharmony
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5 Replies

Hi, sorry you are finding your recovery frustrating, I have to admit I was the same as I am a really active person too. I have had two open myomectomies, one in my twenties and then one in February this year. The one this year was because we had moved IVF clinics (after six own egg rounds) to try donor eggs. I was 44 when I had the op. My clinic did 3d SIS and the 'one fibroid' that my previous clinic said would 'move out the way' if I got pregnant actually really troubled my second clinic and they referred me to a specialist and refused to do my transfer... I ended up having 42 fibroids removed! Bonkers!

I probably didn't do anything for the first 4 or 5 days at home but then I started walking and walked and walked and walked. I found some walking plan for recovery but to be honest basically doubled the times for every week lols. It did mean I was quite sore but by week 4 I was walking about an hour a day... I listened to upbeat music or podcasts to make me feel better. I have to be honest I wasn't back at the gym until about 8 - 10 weeks after my op but that was to my first spin class :)

I was originally told 6 months until I could start IVF drugs etc. But I had my 3 month check up which included a scan etc and they were so happy with the recovery they said I could crack on, so I had my latest transfer on 1st August which is bang on 6 months post surgery. I was told I could start trying naturally after 3 months but to be honest it was a bit pointless for us with my old eggs as I am now 45 - we did try anyway but no luck.

My only advice is not to put IVF off for too long, its just we started IVF at 37 and I thought I had all the time in the world and never expected to be in the position where it was donor eggs or nothing. I have always had a great AMH so I felt like I was guaranteed to be someone it worked for, but turned out it was egg quality and latterly old eggs that were the issue, even though I had loads of them. Thats not necessarily the case for you obviously and you are still 'young' for IVF but we lost 2 years due to covid in my early 40s and it had a marked impact on our results, I just wish in some ways we had started earlier. Feel free to PM me with any questions xx

Aquaharmony profile image
Aquaharmony in reply to

Hi Daisy,

Thank you for your reply you have not had an easy journey! I really appreciate you sharing your experience. From being told 1 to 42 fibroids wow I expected more as I had heard it was common to not find them all but knew I had at least 8 from prior scans before the surgery. However, for anyone reading this I had a routine ultra sound during blood pressure checks in my mid 30s and they saw one fibroid but said not to worry it was common. I wish I had known then to get it investigated further as time is now so important. I was in hospital for 4 days and the journey home killed me but my partner was so excited he invited friends over and we wanted to do stuff and although I thought I was taking it easy the next day my bleeding got heavy and clotted and I was in a fair amount of pain. I have avoided the stairs since then but it has been nearly two weeks since the surgery so I am starting to go stir crazy and really want to go outside. However as I am sure you appreciate I don't want to do anything to jeapordise the recovery or delay things. I think from what you have said I could probably be doing a bit more. I appreciate your advice about not waiting too long for the ivf I have no idea what my egg quality is like or if it is possible to find this out. I hope my recovery will go as smoothly as yours and I really hope your fertility journey is moving towards a happy conclusion. 🙏🏾❤️🤗I am likely to take you up on your offer to PM with questions especially around your recovery plan xxx

RaintoRainbows profile image
RaintoRainbows

HI Aquaharmony,

I had a myomectomy in 2018 for large fibroids. I'm also very active and found it really tough mentally to be patient with the recovery process. If you have an active job, give yourself 3 months before you go back. Do you have access to womens health physio? 100% percent recommend to help prevent scar tissue and with advice re . We only started IVF this year so can't say how that impacted things. Wishingy you a speedy recovery🙏

Aquaharmony profile image
Aquaharmony

Hello RaintoRainbows,

Thank you . I saw a physio at the hospital before I was discharged who made some really good suggestions. However they didn't say anything specifically around preventing scar tissue so I will look into that. They did say you could get a further referral so I will also look into that.

Best of luck with your ivf, great you were able to deal with your fibroids first

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK

Hi Aquaharmony. Yes, focus on your recovery and make sure you rest as long as recommended. Your little embryos are quite safe, stored while they wait for you. Good luck! Diane

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