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

[BoffinMum]

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!

Oh Boffin you really can't go on like this, it's so miserable. Hope you and you me gynaecologist can come up with some sort of treatment which suits you.

It's not good, is it. Although DH did score me some flakes and a dairy milk bar on the way home to help me keep my strength up

No it's not good. Fibroids really are VERY evil. Until I was diagnosed with mine I had never heard of them either - they are very much the covert ninja, under the radar assassin of the gynaecological world.

Have just booked the private MRI scan the consultant wants me to have. £701 earth pounds. Have asked GP to ring me back re: what the wait would be on the NHS sort. If it's 18 weeks my life force would probably have completely ebbed away by then in a little puddle around my MNetting chair.

Interestingly the ultrasound wait on the NHS recently (one week) was about half the time as the one at the local 'no waiting lists' Nuffield private hospital, with more choice of appointments, so who knows, I might be lucky!

Gulp - £701. I had mine done privately and their wait time was 2 weeks, I agree that investigating possibility of having it done elsewhere is a sensible option. Also tell your Gp that you're happy to travel to lots of different hospitals (if you are).

Oh boffinmum. It's crap isn't it. I had mine on the nhs, it was quite quickly done after a particularly bad bleed that saw me bluelighted to hospital for a transfusion. I would say play this up to your GP, describing your period in terms of pints can help.

I had four bags of blood when I went in. Thus is really not a time to be stiff upper lip about how bloody (literally) awful this situation can be. You need the MRI so they can progress your treatment. Being a nuisance may be the only way you get them to take you seriously.

Oh and as I understand it, the fibroids size prevents your womb from clenching down on itself to stop your period, which is why it can go on for so long. And long term anaemia is no laughing matter, it can impare your heart and lung function.

Honestly I do believe I'd thus was a male problem it would be given a lot more importance, rather than a general air if 'woman whining about perfectly normal periods'- it's very hard to describe how bad it can be.

GP rang and it's an 8 week wait on the NHS at the moment, so realistically I will have to bite the bullet and have the private one. The GP was very good about what happens next and says she will refer me straight away to the same consultant on the NHS, and said the surgery side of things is better on the NHS at the moment anyway, because the local private hospitals are having their ups and downs (I had surgery a couple of years back privately around here, and was not particularly well cared for, so this makes complete sense).

She says the nasty haemorrhaging during my commute at the station, feeling so poorly, being needed at work and having to care for a disabled child are all factors in them deciding where to put me on the surgery list, and hopefully it will only be a couple of months wait (it would be a month privately anyway).

My boss is being terrific as her mum had the same thing.

It is odd that regular haemorrhaging isn't given more medical attention.
Wrong place at the wrong time and you could actually die.

My blood pressure was 64 over 40 when I was admitted. I got off the bus from tesco, having left the disabled toilets in tesco looking like a pig had been slaughtered and lay behind the bus stop. I was so fucked. It's taken far too lightly imho.

You can see why hysterectomy was worthwhile for me. I am so very grateful to my surgeon. No regrets, but things were pretty bad. I think you get used to normalising it and forget how compromised you are. I did. Take it easy at work, can you work from home?

Honestly I do believe I'd thus was a male problem it would be given a lot more importance, rather than a general air if 'woman whining about perfectly normal periods'- it's very hard to describe how bad it can be.

Totally agree with this - if you presented at the GP saying you had lost 1 to 2 pints of blood through your nose, ear or mouth within a few hours or days you'd be into hospital quick smart and not released until they'd fixed it. But because it comes out of the vagina it's not given as much importance. I also think it creeps up on us over time, each bleed is a wee bit worse than the one before and you lose a sense of what is "normal".

Do you think we would get it covered on Women's Hour on Radio 4? I think that might be shocking enough to wake people up. There are so many war stories out there.

BTW I did lose a litre of blood through my nose once and I was immediately admitted and looked after!

Can I tell you my story?

I'm 3 weeks post myomectomy and I feel great. I had 3 cricket ball sizes fibroids and one smaller, golf ball, all intramural taken out.

My fibroids have been kicking around size my late teens but grew in pregnancy. I'm 34 now and after trying the mirena (which caused bleeding everyday) for 12 months, I managed to get a referral to a surgeon. After 6 months wait, I had an open myomectomy with a vertical incision. When I got on the table my uterus was the size of 20 weeks pregnancy.

I was under for 3 hours and spent 2 hours in recovery. I lost a lot of blood, despite having blood salvage back of 500ml. There are some fibroids left, but they are much smaller than the fuckers they removed. I had very little pain post surgery, by day 3 I was only on paracetamol and ibuprofen.

I developed sepsis and was kept in for two weeks after surgery for iv antibiotics. Despite being anaemic, which I have been on and off for the last 10 years, I feel great now.

I've not bled for 3 days. I had my first period last week, it was heavy but short which I was told was likely to be the last of the post surgery bleeding coming out too.

The best thing for me is not having to pee every hour. I feel like I could drink 6 pints and hold it for a day. I'm slowing building up my daily activity and hope to go for a gentle swim in week 4. I drove today (automatic) and my scar is healing well.

I do get tired easily but I've got another 4 weeks off work to regain my strength. My tummy is visibly smaller and flatter and despite still being swollen I'm a jean size smaller. I'm not sure if that is more attributable to the 6kg weight loss whilst I was in hospital or my uterus shrinking back down?!

I've got a follow up just before Cmas to discuss what to do about the remaining fibroids. I wouldn't be keen to have more surgery because of the infection risk but might go for embolisation.

I had wanted to try for another baby but I'd need a section now and the risk of repeat sepsis scares the shit out of me. No more babies for me.

I'm not missing my ghosts of fibroids past in the least (melon size on my bladder and orange size nestling on my bowel) They went to fibroid heaven hell in July (total hysterectomy).

I feel so much better, I was back at work after 8 weeks, and hallelujah I've even been running on the treadmill at the gym without feeling like I'm about to wee all over it.

I remember the bleeding days with no fondness whatsoever.

Hope you get sorted soon Boffin, meantime get some floradix down

This is so scary now. Sepsis?!

I'm sorry, I didn't mean to scare you BoffinMum I got a blood infection which is a risk for any medical intervention.

Look at the rest of my post. No bleeding and a huge normal capacity bladder

It would be nice not to feel lavatorially compromised so often.

I've spent the last 18 months strategically planning trips so I know I've got access to the loo to pee/change sanpro. I have a 2 hour commute into Central London most days and was using the loo at my start and finish stations as well as dashing to the loo as soon as I get to the office. It was also a running joke with workmates that if anyone came looking for me they'd find me in the ladies.

My DD (5) is also primed to spot toilets. "Look Mummy! There is the toilet."

I feel like I've had my life given back to me.

Yes, sepsis is scary shit but they give you an antibiotic prophylaxis during surgery and monitor you closely whilst you are in hospital to check for infection.

It was a nurse doing observations during the night that alerted the medical staff to a temperature spike and blood pressure change. I was immediately seen by a doctor and put on iv antibiotics. Blood cultures were taken and I was under the care of the lead consultant who monitored me and discussed my progress daily with the lab to make sure I was on the right treatment.

I had MSSA which didn't come up on the pre op swabs which are looking for MSSA/MRSA. Most hospitals have a pre op cleansing routine you must follow before surgery of a steriwash and nasal antibiotic cream to cut risk of s.aureus infection.

It's a minor risk but I didn't want to leave it out, post about it at the later date and be called out by someone doing a search as not being truthful.

*sorry of course a nurse is medical staff! I meant it was a Health Care Assistant (also a key medical member of staff) who alerted the SHO on duty.

It's rapidly getting much worse. I haven't been able to go into work today. Waiting for a call from my GP. DH overseas

I know you're not keen on surgery and feel it would impact on your career but there comes a stage you just have to put your health first. You can't go on like this, and you don't want it to get to the stage where the decision is taken out of your hands and you're rushed in as an emergency.

I can't remember whether you said you have kids - if you do, are they old enough to fend for themselves as you take it easy? Have you friends/relatives who could help out if you're admitted to hospital? These things always happen when husbands are away, mine travels a lot for work too and it's always when he's away that we have a child throwing up all night.

Hope the GP has a workable suggestion for some relief. It's bloody miserable. (Pun fully intended). Take care.

Oh Boffinmum, so sorry to hear this. I hope you are able to be seen soon. Try and rest. Is there someone who can care for your child if you need to be admitted?

Can I gently prod you towards a new thread in classices, BoffinMum?

"Is this normal? (Massive TMI warning)"

Just so that you can bear it in mind x

Been offered either a UFE or Hysterectomy for my fibroids - don't know what to do