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Original poster

From BoffinMumsFibroid: Come here all you fellow fibroids and bring me your success stories

281 replies

BoffinMum · 27/08/2015 20:38

I am a lovely fibroid the size of an orange and I have successfully infiltrated BoffinMum's body causing all sorts of mischief

Roll up, roll up and tell us what you are up to and how big you have grown.

By the way, my role model is the alien that burst out of Sigourney Weaver's body in Alien. Except I do not plan on bursting out!

OP posts:
Original poster
BoffinMum · 11/12/2016 18:58

Crikey, birthing your Mirena at work?!! "Spillage in Aisle Three"?!!!!

That is a bit like when I was walking along outside my work and my stick-on heat patch removed itself and slid down my trouser leg to stick to the pavement in the manner of a panty liner.

I just walked on bravely and pretended it had nothing to do with me.

Esmya is great and I would recommend you asking the GP for it.

OP posts:
User543212345 · 16/12/2016 12:42

So my fibroid decided to be a wanker this week. Having finished my period on Friday it decided to flood on Tuesday. It was so heavy I called 111 who sent me to urgent care and they said I need another ultrasound and to try to get an earlier gynae appointment than February as obviously things were changing.

We called the gynae every morning and today at 9 they asked if I could be there by 10. I've never got my shit together as quickly before but get there I did. The scan showed one of the fibroids has increased from 15mm diameter to 29mm diameter since my scan on 15 October Confused. Which is probably why it's so much more symptomatic. We did some quick maths and realised that a doubling in diameter is an increase of almost nine times in volume ShockShockShock

Anyway he said it needs to go so has referred me for a hysteropic resection which should be in 2-3 months thank goodness. I'd prefer they took the lot out but I suppose this is more sensible. I'll probably try a mirena again once it's out.

So anyone waiting a long time for an appointment so call for cancellations, you may get lucky!

LunaLoveg00d · 16/12/2016 12:57

Great news. Well, not about the doubling in size and the flooding, but that you've seen the surgeon and have a plan. Hope you get an appointment equally quickly.

Original poster
BoffinMum · 16/12/2016 18:40

Sweaty, that's so awful! But good you were seen. It's actually interesting how frequently appointments can be offered if you ring on the day, as people invariably cancel or fail to turn up, and if they know you can hop in a car and get there, you are able to fill a slot that would otherwise go empty. I have done that with a couple of other conditions in the past.

OP posts:
troubleatmill2011 · 17/12/2016 09:05

So have been approved for UFE and go in on the 11th Jan! My MRI showed my fibroid was 6.5cm (not 8.5) and have 2 smaller ones

User543212345 · 18/12/2016 01:04

Oh Sweary did you think the drugs would help?,Bwahahahahahaha.

Fucking fibroid.

LunaLoveg00d · 18/12/2016 09:45

Hope the UFE goes well for you, Trouble. Apparently it can cut symptoms by two thirds when successful, and it's minimally invasive. Will you be in and out as a day case or will they expect you to stay over? Having the procedure date set made a huge difference to me, you know there's light at the end of the tunnel and when you're flooding all over the place you know you'll only have to contend with it for a few more days/weeks.

I'm almost 4 weeks post-hysterectomy now and doing OK. Had a wee infection along the wound last week but caught it quickly and a course of antibiotics from the doc has sorted me out. In a lot less pain and managed a 2 hour wander around the Christmas markets yesterday. Going to start driving again tomorrow, and although I'm still banned from heavy lifting I am easily able to manage things like laundry, cooking, light housework. And not having bled AT ALL for the last four weeks is very odd!!

troubleatmill2011 · 20/12/2016 05:50

Thanks Luna, I've got to stay in overnight. Glad you're feeling ok, 4 weeks without bleeding must be bliss, I don't expect to see immediate results like that but fingers crossed won't be too long

pklme · 20/12/2016 09:20

I am learning so much here! I need to go back and RTFT properly.
I had very frequent, unpredictable periods so had a mirena. I then bled continuously for a year before it was removed. I have a fibroid.

I still have heavy, unpredictable blah blah blah, worst being the second flood that happens a thing from a day after I think it's finished to three days after. So I can end up wearing sanpro all the time, because between starting early, lasting a week, and an unpredictable second flood a couple of days after there are just no guarantees!

When it's bad, I don't sit down in public. I have a cardigan over my work chair just in case...

Tranexamic helps, but I need to remember to take it BlushHmm

Is this the fibroid? The scan I had prior to the mirena showed one, but no one ever said anything about it, what it is, what it does...

LunaLoveg00d · 20/12/2016 10:40

Sounds like it's the fibroid to me - many of us have had similar symptoms. Fibroids are very common and apparently 1 in 3 women have them at some point. Lots of women don't have symptoms and go through life unaware they have fibroids. Others have the flooding, irregular bleeding and huge blood loss which the fibroid causes. I don't think the scientists know why some people develop fibroids, what causes them and why some people have symptoms and some don't.

What I do know though having been through it all is that there are LOTS of options for treatment. If Mirena and tranexamic acid aren't working for you (and wearing sanpro every day with a cardi over your chair says it really isn't) then in your shoes I would be going back to a sympathetic GP and asking to be referred to a gynaecologist. They can then take another look at your fibroid and see what it's up to. In my experience I was at my worst when the fibroid was growing rapidly, they seem to take notions to themselves to grow unpredictably and in spurts.

There are lots and lots of treatments on offer and what is recommended for you will depend on your age and how close you may be to menopause anyway, and whether you think you have completed your family.

Good luck and take comfort in the fact you're not alone!!

pklme · 20/12/2016 14:31

Thank you @lunaloveg00d
(Don't know if the tag thing works, thought I'd try it!)

I'm going to try and get better at having tranexamic acid to hand, and give it a few more months. I was hoping my recently started thyroxine would help, as irregular periods can be a low thyroid thing too. No luck so far, though.

My replacement moon cup has arrived- that used to make things easier before, too.

User543212345 · 23/12/2016 21:11

Still bleeding here. I've had three bleed-free days this month (and I spotted a bit on those) and I'm mightily fucked off. The GP has now prescribed me norethisterone so we'll see whether that works. I've spent so much on tablets and tampax this month! Anyway, been on the norethisterone for a day so far and now bleeding more heavily and very clotty. I am heartily sick of this. And so bloody tired.

Original poster
BoffinMum · 23/12/2016 22:59

I thought I might list the contents of my bleeding pack here, which is an airline amenity bag I carry around with me in case of disasters (although since Esmya this hasn't really happened).

  1. 1 x Tena lady pants (pink packet type)
  2. 4 x Allways nighttime pads
  3. 4 x super plus extra Lillets
  4. Travel pack Femfresh wet wipes
  5. Radar key for disabled toilet (necessary after the railway station blood tsunami, the normal toilets are a long way from everywhere)
  6. Tranexamic acid
  7. Ibuprofen
  8. Omeprazole (to take with Ibuprofen)
  9. Spare pair tights
OP posts:
LunaLoveg00d · 30/12/2016 14:24

How have all of the fibroids been behaving themselves over Christmas?

fenneltea · 30/12/2016 19:48

Mine's been a pain, bled continuously from the 8th Dec and started heavy flooding on Christmas day and is only just slowing down today. Ive got a resection booked for Wednesday after it had to be cancelled last month, Im desperately hoping it works!

No bleeding sounds heavenly luna! Glad you're recovering well.

User543212345 · 30/12/2016 20:59

mine has continued to be a twat, Luna - the norethisterone stopped me bleeding like a stuck pig but I spotted all through Christmas and then after 5 days of my ten day course I started bleeding more heavily again. Three days left on the tablets and then we'll see. It's kind of the new normal now, to bleed continuously, so I'm a bit more resigned to it now.

How are you feeling? Lifting anything yet?

troubleatmill2011 · 30/12/2016 21:05

I am 12 days late, it's really weird! After months of heaving bleeding I had two on time light but long periods, but this month nothing!! I don't get it but am enjoying it!

LunaLoveg00d · 31/12/2016 00:03

Watch out, Trouble, your fibroid obviously knows it's almost New Year and is saving itself for a massive explosion at the bells.... Hope not, but I'm sure that's how they operate. The worst of it is the unpredictability.

I'm doing well thanks, I'm still not sure if my scar was infected or if it just wasn't healing in a section, but it's fixed now and I'm feeling OK. back driving, doing pretty much everything I was doing before surgery and although I'm still banned from doing heavy lifting like taking the bins out or lugging laundry about, I can do almost everything else. Back to see the consultant for a follow up on the 9th to get the all clear. Can't really milk the "but I've just had major surgery" bit for much longer... kids are getting wise to the fact that i'm doing fine!

troubleatmill2011 · 31/12/2016 07:45

Hah Luna yes that has crossed my mind. It's lurking ready to pounce and say SURPRISE!! Pesky bloody fibroids....Confused

troubleatmill2011 · 31/12/2016 17:05

Spoke to soon, it's bloody here - pardon the pun. Happy new year NOT lol

LunaLoveg00d · 31/12/2016 17:32

Told you - they KNOW.

User543212345 · 31/12/2016 17:34

Oh trouble isn't it quite the arsehole!

I was serving at a carol concert when mine exploded. Fortunately I could escape to the vestry as I had picked the right side of the altar but it was very much acolyte exit stage left Blush

User543212345 · 06/01/2017 15:34

So my bleeding finally stopped after a month. Booked a holiday. Guess what happened? Have tranexamic acid, norethisterone and mefenamic acid. Hopefully all together will bring bleeding down to manageable levels rather than the flood-fest we have now so I'll actually get some time on the slopes.

LunaLoveg00d · 10/01/2017 22:49

How are all the fibroids doing?

Saw the consultant again for my discharge appointment and she was very happy with the way it all went. All healed, everything went to plan (except my copious vomiting after the anaesthetic). She's also forwarded me the picture of the fibroids and the other stuff she removed - kind of novel seeing your fallopian tubes and cervix lying on a table!

User543212345 · 11/01/2017 07:16

Glad you're healing well, Luna

I'm still learning about mine really. On day 4 of tranexamic acid and the bleeding had got to normal person period level so I went out with just a tampon in and without my spare pants/pad/everything in the world pack because I don't really like to carry a bag when I ski and the drugs seemed to have worked. Around 11am, when we were at the farthest point on the piste map from our chalet I felt that awful whoosh and demanded a loo stop. Drenched pants, pouring blood - disaster! Fortunately one of the women in our group had a spare pad so gave me that but we had to head home because it was barely being contained by pad/tampon combination and I needed to be somewhere less exposed to deal with it (and I really wanted clean pants). So we skied back to the inter-village bus (once an hour) and bloody missed it so after I shouted at DH Blush he sorted me with a taxi which cost €66 but got me home so I could clean up. It calmed down around 3pm and since then there has been little more than spotting. Fucking thing.