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!

Yes ultrasound will pick them up easily, I also had a MRI when they were investigating different treatment options.

Two days after the hysterectomy and I'm feeling much better. First 24 hours was pretty awful with vomiting and moving was very painful. Yesterday was much better and I'm moving around on my own much more easily. Being discharged today.

So pleased it went well, Luna. I am doing quite well on Esmya but I did have one day where I had a terrible headache and felt very wobbly. Overall though bleeding is down - only one flood all week - and I have found one beneficial side effect of the Esmya to be increased libido. DH is a bit about this in case I wear him out.

BTW mine was first diagnosed by ultrasound too.

Thanks, that's good to hear I might have an answer soon. Wishing you all a speedy recovery

So a week today was the eviction date for the fibroid and although I'm still on the ibuprofen and paracetamol, I'm feeling right as rain. Getting out and about, able to walk short distances and less pain every day. Have crossed the line from thinking "why the hell did I ever consent to a major operation" to thinking "that was probably worth it".

Still early days though and another 3 weeks of not driving, but I'm feeling OK. Dressing comes off on Thursday and then I need to see the surgeon after 6 weeks and that's that done with. I can go and buy white linen trousers for next summer without worrying about flooding.

Can't remember if I mentioned up thread that I asked the surgeon to take a picture of what she removed from me during surgery and she happily obliged. It was very smooth and oval shaped, not knobbly at all. When she'd seen the size of it and the way it was attached to the uterus the surgeon said she felt we'd made the right decision in going for the operation.

Best wishes to anyone else coping with evil fibroids and my only advice would be to consider hysterectomy as an option if it's offered to you, I really thought recovery would be a lot worse. Considering going back to work next week (although I do work from home on the laptop). Onwards and upwards.

Excellent news and interesting to have seen the blighter.
I have been on Esmya for 11 days now and no flooding (normally have events twice a week or so).
I spent some time this week on Figleaves and Coco de Mer websites, much to DH's bemusement. I have also had my hair done. I had no idea being on these tablets would constitute a massive lease of life in this way. People keep saying I look very well. If only they knew

So glad to hear you're feeling a lot better on the Esyma. Is this a long term solution do you think? It was ruled out for me because of my asthma I think.

Well I certainly hope so and the gynae seems sympathetic. I would say the only downside is that I have been putting on some weight but I am prepared to deal with that given the alternative.

Might we join? We're Sweary's cluster of evil little bastards. We might be small - each around the size of a walnut, but we've worked out that if we work together we can cause havoc! What fun!

The GP has put Sweary on the pill whilst she waits to see the gynaecologist in February. So when her period started the other day she was delighted to find that days 1&2, rather than being the massacre it normally is, was like a normal period. So on day 3 she ventured out. Silly Sweary. We decided to fuck with her and make day 3 flooding day. New pants and tights had to be purchased when we flooded epically through a super plus tampon in 2 hours. She's only vaguely clean now after a shower. Hahahaha.

Bastards. Roll on February when I see the gynae.

I'm not sure what's worse - one mega fibroid, or a whole lot of smaller ones! How old are you Sweary?

I'm 38, Luna. And would love to just get the whole lot whipped out. DH is vasectomised but the doctors have already said that I'm too young to consider hysterectomy because I might want more children (we have none and made that decision a long time ago). I don't need my uterus and frankly could do without being housebound for three days a month.

How are you recovering?

So had the stuck Mirena out on Friday which was a bit tough as it ended up being a mini operation without anaesthetic, with a grumpy nurse in the room who irritated the hell out of me while I was trying to ignore the pain and take myself to my special place.

Saturday, very light bleeding, no pain, I was pleased. Onwards and upwards, I thought. Worst is over now, bastard will shrink (and its friends). I will be fine, I thought.

Today? OMG. Floodgates have opened. Three super plus extra tampons plus concurrent nighttime towels an hour at the peak. Clots like liver, huge. This is all while taking Tranexemic acid at the maximum dose.

Not happy about this AT ALL.
Will it never end?

I spend my life barely leaving the house and today I took:

4 spare towels
4 spare tampons
Inco pants
Spare trousers
Spare normal pants

Just to go out to church. I mean, this is ridiculous.

Oh dear. I know I bled quite a bit when I had the Mirena put in, never had it removed though as it was shoved so far out of my cervix that it all came out with the fibroid and the uterus. Did whoever removed it say that there was likely to be more bleeding? When do you see the gynae/GP again?

No, they didn't say anything about the bleeding. The consultant had to remove it as it was stuck. I am supposed to be going back in something like 6 months time.

Boffin when I had my Mirena out I bled very heavily - nowhere near as bad as you sound to but heaviest I ever had to that point. It was that bleed, and the period a month later, that got me to the GP to,start investigations. Sorry that it's hellish for you, but I think it's not unusual when you have the Mirena removed. I had a thread about it at the time and there was a fair amount of "it happened to me too" on it.

Let's hope that once the uterus adjusts to the Mirena not being there any more that the bleeding subsides. Fingers crossed.

38 is perhaps on the young side for a hysterectomy but if you've completed your family and your DH has had a vasectomy, it's clear you've thought about contraception!! I was lucky in that my surgery was covered by medical insurance and i have definitely found that the private sector are happy to go with what you want and aren't as bound by guidelines and budgets. Hysterectomy is the "last resort" option for many women on the NHS and you might have to try a few more options before being referred for surgery.

Recovery is going OK. Had the operation almost a fortnight ago and the pain is certainly a lot less. Couple of nurofen twice a day and it's manageable. I am doing more around the house, made spag bol last night and thinking about baking later. Have been banned from lifting anything heavier than a 4 pint carton of milk though and quite happy to leave the ironing to DH. Two more weeks not driving though.... Scar is healing up nicely considering the size of the bloody thing and the only thing which is bothering me is that although the area around the scar is fairly smooth and tight, my belly is "overhanging" somewhat. Combination of three pregnancies, a fibroid and stomach muscles which are shot to hell. To be honest though, even if I have to wear spanx for the rest of my life it's better than the bleeding.

Today I'd be happy to do a DIY hysterectomy, Luna! Horrific cramps, heavy bleeding and feeling like I've been hit by a truck. I'm considering calling the doctor but given that they've already referred me to the clinic I don't think they'll do anything. I have mefenamic acid but it's not even touching the cramps (and really doesn't help the bladder pressure). I found some co-codamol from a recent prescription so have just taken those too. This is hellish and I'm so worried I won't be taken seriously as my fibroids are only small even if they are very symptomatic. I had the mirena for nearly a year and bled every day on that, so it's not right for me but am so prepared to be fobbed off again

I think you just have to tell them your war stories to get their attention.

The NHS certainly do want to try everything!

I saw a consultant last Monday - and I had decided Mirena wasn't for me and that as I am 46 I wanted to go straight to a hysterectomy.

I made my feelings very clear and even though he agreed to no Mirena, I have to have a hysteroscopy under general anaesthetic in February. I said it seemed a waste to have 2 general anaesthetics - just do it once and take everything out..... but apparently that can't be done!?

Very tempted to go the private route.

Glad you are recovering well, Luna.

The thing is with a hysteroscopy they might take a peek and decide that ablation is better, or embolisation. Both are less invasive and cheaper than a hysterectomy, which is major surgery, 3 nights in hospital, lots of drugs etc. You'd probably be home the same day with other procedures.

My hysterectomy was covered by insurance but I think the bill if you were paying out of your own pocket would be around £10k, which is a lot of money. It might be worth however finding out how much your local private hospital charges for consultations with private gynaecologists, it's usually around £100 and that gives you the option of chatting through what you've been told on the NHS and finding out whether that they've suggested really is the best option for you and your circumstances, or just the cheapest...

I have just gone private and they recommended a hysteroscopy in order to check things out, as a hysterectomy is really drastic. So it's not an NHS money saving thing, it's actually a best practice conservative procedure. I would go along with it. BTW I had mine without anaesthetic and it was only as bad as a cervical sweep to bring on childbirth, so see if you really need to be knocked out for it. I actually got to see Brian on a computer screen!!

Hi, may I join you. I have a long gynaecological history, I have severe endometriosis and have recently been scanned and they found multiple fibroids (too many to count!) and a larger 6cm fibroid. I also have a 6cm simple ovarian cyst, my womb is the size of a 20 week pregnancy. I have an urgent gynaecologist appointment in March! Currently I am suffering in pain, which started on Sunday, I have pain in the large fibroid and back ache and hip pain.
I have not been able to sleep, painkillers are not touching it. I saw my gp yesterday, she thinks the fibroid is degenerating hence the pain. She gave codamol, and said there is not much more she can do at the moment. I went home took the codamol fell asleep, woke up with chest pains, phoned 111 who sent an ambulance. Turns out I am sensitive to codamol, my stomach lining became inflamed which caused the chest pain! So I don't want to take the codamol anymore. I work in retail and really need to be back at work. The pain is just about manageable.
Has anyone experienced this? Is there anything I can do to relieve the pain I am desperate thanks!

Sorry to hear that Alpha, I have a 8cm fibroid and a 4cm simple ovarian cyst. Diagnosed a few weeks ago, heavy, long &'painful period for about 6 months. Seen a gynaecologist and had an ultrasound. Offered a hysterectomy or UFE. Choosing UFE and going for an MRI to assess suitably next Thursday. I have also back and leg pain and always going toilet! Totally know how you feel, I take ibuprofen and co-codomal but lucky have no reaction to it. Having fibroids suck!!

Alpha, can you get your GP to refer you for an NHS ultrasound? If they find something bad that might help you get seen quicker.

In terms of pain stick-on heat patches have helped me in the past, and taking omeprazole to protect the stomach from painkillers in general.

Thanks for replying, the pain is subsiding now. I had an ultrasound in October, the urgent referral is because I have been suffering pain in the ovary my gp thought the cyst on the ovary might be twisting. The pain I had this week is coming from the fibroid, the large fibroid is as the top of my womb and I can feel it. It has been very tender to the touch. My gp is trying to get me seen sooner, there was nothing sinister on the scan, it's just the fibroids and cyst are causing pain and other difficult symptoms. Thanks for the suggestion Boffin re: omeprazole, I hadn't thought of that. You have given me a bit of hope , how are you getting on with the Esmya?
Good luck Trouble, I would be interested to see how you get on. I would love to have a hysterectomy, but my womb and bowel are stuck together due to the endometriosis. I had fertility investigations done years ago and the endometriosis was discovered then. I saw a gynaecologist 2 years ago who suggested a hysterectomy when I told him about the adhesions he went very pale! So I am guessing a hysterectomy is my very last resort, I would be interested to hear how you get on with the UFE.
As an aside I also have a Mirena story, I work in a certain high end supermarket, and my Mirena decided to make a reappearance whilst I was working ....