Can we talk Fibroids pleeeeeease ?

[Tillyboo]

I've just had a pelvic scan and I have a 4cm fibroid which is pressing on my bladder (explains why I'm always needing a wee). My question is this ..

• Do fibroids create a feeling of bloatedness & definite appearance of a distended tummy. Honestly, if I let it all go I look about 5-6 months up the duff !!

The doctor who did the scan said the fibroid WOULDN'T be the cause of my big tummy so I'll be going back to my GP next week to discuss but want to go armed with some more info and possible real life stories.

I have read that the size of the fibroid is in relationship to the size of the uterus during pregnancy so the fact I look pregnant makes sense.

I am 49, and although probably just under a stone overweight at the moment, I am very active. I ride, Nordic walk, swim, have a personal trainer now & do strengthening & toning exercises 3 times a week. But, I have not been able to shift this mass around my tummy.

I've even cut out gluten & eat healthily.

I have missed 2 periods in succession & have been having the dull aches that normally lead up to a period, but nothing .....

I'm probably in the peri-menopause as I've been getting hot flashes in the early hours of the morning & my joints are very stiff & painful.

Many Thanks !

I can't see how a 4cm fibroid would make you look pregnant but that might depend where it is in your womb I suppose. Mine sits on the top but if yours is on or in the front wall, maybe that's why you have a big tummy.

It's worth finding out about your options (embolisation, Esmya, take the fibroid only - myomectomy, hysterectomy and your other option - to just leave it alone as many shrink after menopause).

I'd wait till after the GP appointment and find out why your tummy is so big tbh.

Mine is 11cm and makes me look 20 weeks pregnant. That's what it says in my hospital notes, not just what I think. Am going to have a myomectomy soon. Can't wait to get rid of it!

mine is 25cm and i definatly look pregnant! Having hysterectomy in 2.5 weeks, also cant wait to be rid. They do cause bloating etc, Yes speak to your doctor about options, maybe an embolism?

I have a few, the largest being 6cm. I am seeing the gynae in 8 weeks and hoping he's going to offer me a hysterectomy as I am sick and tired of the whole thing! I look pregnant but I am an apple shape and have always had a big tum so not sure. If your big tummy is new, I'd be wanting to find out the cause, if it's not the fibroids then what is it?

I have a few. The largest being 3cm. I'm just considering my options at the moment because they are really affecting my periods. I have a mirena (which has moved ) so it's only doing half a job. I can either have it replaced or an ablation. I read somewhere that the mirena is being touted as a treatment for fibroids but I can't think how that would work?

Oh I forgot! I have a belly too! But I also have ulcerative colitis so I'm blaming that as well.

Mirena didn't work for me - I think it moved but this wasn't confirmed. Had ablation last year which did make my periods much lighter (though not gone completely which is what I was hoping for!) but, only a few months after it, I started having problems weeing (frequency and not fully emptying bladder) and now I am spotting all month long and have bloating, abdo pain etc. Can't help but wonder if I didn't just exchange one set of problems for another. I had the ablation not knowing about the fibroids - gp thought my nightmare periods were just hormonal. Had a scan a few weeks ago after I went back to the gynae about the wee problems. Tbh I suspected fibroids all along. I think mine are at the back and on the outside as they were not picked up when I had hysteroscopy last year before the ablation. I thought I'd be seen again sooner once I had the scan and was quite upset to not get an appointment till 14 weeks after. Just want it all over and done with now

I had several large fibroids, (looked about 28 weeks pregnant). I refused an hysterectomy. Since the menopause, they have almost disappeared.

I had the opposite problem and couldn't wee (had to self-catheterise for 6 months 2/3 times each week when I just couldn't go unassisted). After scans etc found a 10cm fibroid pressing on my uterus. Had a lap sub-total hysterectomy in November and thought it was marvellous until last week when my cervix suddenly decided to 'fall out' by about 2cms. Now waiting until 1st July for gynae appointment. I've heard it's pretty common so I'd think long and hard about a hysterectomy and be 100% sure that you want to rule out other options first. Having said that post op recovery was SO quick and I was back at work within 2 and a half weeks.....maybe I did too much too soon and that's why I've prolapsed - that's one question for the doc when I see him!

I am pretty fit too and walk masses (until this week!), cycle and go up mountains. I've always been an apple shape though so always carried a little too much weight after gorging during 1st pregnancy and have serious flabby belly which will never go away sadly. I did feel flatter afterwards but there wasn't really a big difference that you'd notice from the outside.

Don't think a 4cm fibroid would make too much difference but again I suppose it's where it's sitting that makes the mass noticeable or not from outside appearances.

I have a fibroid, it was 5cm when first scanned a few years ago but I'm sure it's grown since. My gynae told me that it was the reason I 'looked five months' pg'. I'm quite sure mine is affecting how my tummy looks: I do a lot of sports/dance using core strength, am very lean elsewhere etc, but I tried on some tight dresses today and I looked terrible! I can actually feel a firm lump in my lower abdomen, it changes depending on time of the month.

I've had two Mirenas. One got lost and the scan to find it was the one that detected the fibroid. I got a second one put in as I was advised it was a treatment for fibroids as well as reliable contraceptive, but it fell out one day (I didn't even feel it come out, just found it in my pants!). So I'm on the implant now, which is OK but I still have very heavy and long periods, with no regular cycle.

I'll be going to see my GP about treatment soon, have just been too busy in the past few months. I'm in my early 30s so definitely can't wait for the menopause!

I've got an appointment with my GP in a couple of weeks to discuss the results and where I go from here

From what I have researched, even a 4-5cm fibroid can give you a big tummy.
Thank you for sharing your experiences, certainly food for thought and a bit of ammo to take the the doctors.

How quickly do fibroids grow, jut out of interest ?

I have 2 which are 6cm but are side by side and a couple of tiny ones. Please don't assume you need a hysterectomy, there are alternatives. I used to have crazy periods that would last for three weeks. I'd get one week off and they would start again. I became severely anaemic and needed a blood transfusion in January. They gave me medication (Esmya) and it has had an effect. I do look less 'pregnant', they do feel high up though but I haven't had a period since January and I'm not sure how much is thickened endometrium doe to the medication. They are supposed to shrink them, which I think they have done as they were 8cm and 7cm in Jan. I'm on the waiting list to have them embolised but I may ask them to hold off so that I can see what's happening. They will tell you about a hysterectomy first so you need to ask them about the alternatives.

I had the opposite experience- had to beg for a hysterectomy. they offered everything else (embolism etc) first. Embolism didn't work for me, btw, but I think that's because mine is so big.

I had transfusion in January too- horrible isn't it ladymary?

Yup. They couldn't get a vein (probably because I had no blood) so used the one in the back of my hand. It was soooo painful. I do feel a lot better now though. I'm a bit worried about how my AF will be when it eventually turns up. I wouldn't have a hysterectomy; I'm 35. There's also no one to look after ds. I would prefer to have just the fibroids removed but I can't stay in hospital for longer than a day and I can't be off my feet for weeks.

25cm is huge! Is it in the wall of your uterus or on a stalk on the outside? They do stop growing after the menopause, apparently. The new esmya medication is supposed to stop them growing but the only have the research to back this up up to 6 months after the three month course is stopped. The doctor did say it would lighten my AF which was more of a problem than the fibroids. I have no idea why they appear to have grown upwards when they are smaller on the MRI scan I had a few weeks ago.

In the wall. Yes, I'm 40 now, don't fancy waiting till the menopause though, just want rid- and yes mine is huge, vile thing. I call it Boris .

Esmya did nothing for my fibroid and my periods are horrendous now that they've returned after taking it. They were ok before . I've had my fibroid for about 20 years and have had all the treatments except myomectomy and hysterectomy. I've never felt pressured to have surgery but I have opted for it now. My bugger is unlikely to shrink after the menopause as it's been so resistant to other treatment. I can't wait to finally get rid of it but I'm glad I tried everything else and waited until I'm near to menopause as I wanted to keep my own hormones for as long as possible.

Just read your post LadyMary I don't want to worry you but when I was taking Esmya I thought my fibroid was getting bigger. Turns out my womb filled with fluid which pushed it upwards and made it seem as if it were bigger iyswim.

I'm only greatful that I was in my own home when the fluid gushed out. I was like waters breaking. It only happened the once thankfully but I took spare clothes to work and a plastic bag/towels to put on my chair.

Thank you, LetsFaceTheMusic. I had a MRI a few weeks ago and they didn't mention anything about free fluid, it was larger then. I'll email the doctor.

The fluid was in my wombLadyMary not 'free'. Also it was definitely not wee as I had no control over it and it flooded out far faster and didn't smell of anything. I was panicky at the time so kept my clothes until next morning - just to make sure - still no hint of a wee smell.

How long after you'd stopped taking the medication did the 'flood' happen? I read the radiographer's report and it didn't mention any fluid or enlarged endometrium. It does feel pretty solid. Hope you're OK now.

It was whilst I was taking the meds. In the third month. I'd been thinking that my fibroid seemed bigger for about two weeks and then the flood happened and my womb went back to normal size. I went to see my GP and he explained that it must have been my womb that was enlarged with the fluid and not my fibroid getting bigger.

Thank you. I finished mine a couple of weeks ago. It does seem smaller, just a lot higher up then it used to be but it goes down a little, then goes back up. I'm not too sure what to do now. Have yours grown back?

Embolisation and Esmya had no effect whatsoever on the size of my fibroid.

I did try cutting out all wheat, dairy and non organic food for a month and replaced them with beans, fish and organic veg. They did seem to go down, which could have been a coincidence. I also tried acupuncture and chinese medicine but they grew. I'm sorry they didn't work, LetsFace.

Sorry, Tilly. Look into all of the options before you decide on what to do.

I have just found out that I have a 10cm possible uterus fibroid, the GP missed this and as I was in the surgery I asked for a copy of my last MRI for my back. I read in this rapport about the large mass. My appointment was to see the GP that I can not wee which at first I thought was neurological but upon reading I realised it must be the mass. I had to tell the GP basically what was wrong with me and I asked sternly why this was missed upon them reading the rapport? My husband who is medically trained as I am myself was appalled as this is now the second time I have suffered negligence by this surgery. The last time I was left a year with a ferritin level of 8!! Which ended up me being admitted to hospital for a week in a terrible state of malabsorption due to another medical condition not related to this one.
I like my surgery but this is bordering on neglect. I have now been referred for an ultrasound but meantime what do I do? I am in tears every morning trying to have a wee, walking round tapping below the belly button, running water and my body starts pushing almost like when I was in labour...unbearable but I am now to wait for the scan. I read another person on here had to self catherisise for a while. Any ideas.? Should I seek help at A&E.