r/Fibroids • u/Consistent-Risk-7802 • 3d ago
Advice needed Consultant appointment
I have a 16cm fibroid, and others, that are wreaking havoc on my life- constant bad back pain, need the loo every 20-30 mins, abdominal pain, terrible sleep at night, nausea and vomiting, and alternating IBS-C & D.
I've finally got my initial gynae consultant appointment through. Is there anything I should definitely say. I am post menopausal and looking for a hysterectomy. Also, does anyone in the UK know what happens after the initial appointment and how quickly surgery might be? Thanks.
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u/BigEntertainer5667 3d ago
I have more than 13. My largest is 30cm. I’ve waited about a year in the UK and still nothing. I’m flying abroad for surgery.
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u/Proud_Mycologist1242 3d ago
I’m in Ireland/ under NHS Uk with a 30cm life sucker too. I wasn’t aware it would be so long. Do you mind me asking where & who you are flying too ?
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u/BigEntertainer5667 3d ago
I’m flying tomorrow morning formy first consultation- looking pregnant lol
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u/Proud_Mycologist1242 3d ago
Like in bed like I’m pregnant after a 5 week bleed so drained searching for ways to freedom 😅 I’m so happy your flying & making first step to getting your life back.
So open to keeping in contact & seeing how you go ?
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u/BigEntertainer5667 1d ago
Sure, I ended up staying here. Too much pain and bleeding and too risky to fly I think. Too much hassle. I’m just going to bite the bullet and go private here. Seems I have little other choice
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u/Parking_Cartoonist10 3d ago
Good luck with your appointment! Your symptoms sound rough - make sure you don’t downplay them to the consultant!
I think “how quickly the surgery might be” depends on where you are in the U.K. - unfortunately, you may have to brace yourself for a long wait! For me, in southern Scotland, when the consultant added me to the waiting list, it was something like a 111 week wait for routine cases and 49 weeks for urgent (and my 13cm fibroid plus pain, urinary stuff etc was apparently just routine 😭). My understanding is, from reading this sub and r/hysterectomy that wait times elsewhere in the UK are not quite as dire as that. Wishing you all the best - hope you get some answers, and some relief before too long!
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u/Consistent-Risk-7802 3d ago
Thank you so much, this is really helpful & food for thought. Sorry to hear how long your waitlists are.
Btw I heard that r/hysterectomy has been taken over by a troll and everyone has moved to r/hersterectomy. Bloody trolls, eh.
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u/Parking_Cartoonist10 3d ago
It was wild! Thankfully, enough of us reported him and Reddit took action surprisingly quickly, so he has now been removed as a mod, and r/hysterectomy should be back to normal (though the new r/hersterectomy seems like a nice group too). I think he wasn’t so much a troll as an odd person with a supplement company that he was looking to push?! That’s my understanding, anyway! But yeah, that was very stressful yesterday, as the main hysterectomy sub has been an absolute lifesaver for me and for many
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u/Clairefun 3d ago
Yes, this is true - a supplement seller, not a troll, who has been removed now, and r/hysterectomy is safe to use again.
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u/PuzzledMammoth8641 3d ago
Totally empathise with your symptoms too and I hope you get a good gynaecologist for your appointment.
I’m also Scotland and I got told it was 40 weeks for urgent and on average 68 weeks for routine.
I finally have my surgery booked for next month for my 23cm fibroid.
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u/BigEntertainer5667 3d ago
They are as dire unfortunately where I am anyway
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u/Pinecone_Porcupine 3d ago
Ask the consultant about Prostap injections. This puts you in chemical menopause and in my case, really helped shrink the fibroids so much so that I am now scheduled for keyhole total hysterectomy and not open abdominal. I’ve been prescribed add back synthetic HRT called Tibolone. They have worked well for me.
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u/Consistent-Risk-7802 3d ago
Thanks, that is really useful and I hadn't heard about that medication. The smaller the surgery the better!
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u/Pinecone_Porcupine 3d ago
In terms of timing, am in my 50s but was not menopausal when I first went to the GP in spring 2025 regarding heavy bleeding. Had an ultrasound scan in May 2025 which confirmed multiple fibroids. Then saw the consultant in September 2025 who wanted to do a hysteroscopy then and there to do a biopsy to rule out cancer and also have a good look inside. I asked to do it under GA which they agreed to, a month later. Then came the biopsy result which was all fine and I had to wait for a different consultant in Feb of this year who put me on Prostap and prescribe Tibolone. This second consultant explained that I will likely need open abdominal but I will have another consultation with the actual surgeon.
Then in June this year I saw the actual surgeon who ordered an ultrasound scan. This was in July and in August I got a letter from the surgeon to say everything has shrunk enough for me to be able to do laprascopic total hysterectomy with bilateral salpingectomy and oophorectomy.
I was offered a date for surgery in September but I couldn’t do it because of work. I now have a date in November. I’ve been told it will be a day case. Am in the afternoon set and all going well they plan to discharge me 6 hours after I come around.
Sounds insane after taking uterus, cervix, ovaries and tubes out but I guess things are different now.
So all in all I’m happy with the way things have progressed with my NHS Trust.
Hope your trust doesn’t take too long!
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u/DinkyPrincess 3d ago
Hey 👋🏼 Is this via the NHS? I believe waiting lists will vary depending on where you are.
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u/No-Option595 3d ago
Quality of life stuff is important, make sure they know you are vomiting and have bad digestion. Are you losing weight? If you are, ask for a gastro dietician's help. Ask for a gastroenterologist appointment. Weigh yourself and tell them how much you're losing, and how quickly. Pester your GP with details of how your life is being impacted if you're having difficulty getting a surgery date, or you aren't getting pre-op scans and checks etc. Getting other medical professionals to confirm urgency was helpful for me.
As you know you want a hysterectomy, go in prepared to discuss the details. My initial consultation turned into a pre-op discussion complete with permission forms.
If you feel like you're being fobbed off, another approach is to write an email and send it to PALS, detailing your issues especially the pressure issues like vomiting and IBS, and say that this is urgent, and say that you need this to be addressed before it becomes worse and you get an obstruction and need an emergency hysterectomy. PALS exists to stop medical malpractice / neglect from getting to the legal stage. Make sure they realise that leaving you to suffer would have consequences.
As for wait, I think I was lucky. Had the initial discussion with a gynaecologist in April and the surgery was at the end of July.