Fibroids...have I got them??

HI Pepsimax

Your symptoms are very similar to mine. For many years my periods were always heavier than most peoples, even from a young age. In late 2003 I started to experience the same symptoms as you.

In early March 2004, the bleeding started to get very heavy, with extremely large clots, so bad that I was going to bathroom every 30 mins and taking so long in there, that other team members would get worried. After 5 days of this, I started to feel really faint and got an emergency appointment with the doctor, who put me on medication to stop the bleeding while I waited for a blood test.

At that time I was in training for a charity trek to Machu Pichu and I couldn't understand why I was getting breathless even walking up the stairs. I had the blood test and then got a phone call the following day to say that an emergency appointment had been made for me to get to the doctor asap. I found out that my iron count was 6.5 and borderline transfusion time - no wonder I had no energy.

Appointments were rushed through and I had an appointment with the Gynae consultant within 3 weeks. Although I was flying out to start the trek early May, I was told that if I was able to get the iron levels up to double figures I would still be able to go. I did manage to get there, with rest (work was great), loads of broccoli, liver and iron pills - completed the trek while on 2 lots of medication. The medical team where aware of the medication and were fine with it.

The end results following the scan, was that I had a massive fibroid and due to other commitments, (namely holidays), the course of injections to try and shrink it, the surgeon performed a hysterectomy at the end of October, when I was told that the fibroid had started to calcify, so had been there a long time. This operation for me was the best birthday present I could ever have had. You don't say your age, I was fortunate that I had finished having my family so I didn't go through some of the \"grieving\" process that can happen.

I wouldn't worry about seeing a male doctor, although it can be embarrassing, my doctor and the consultants were all male - I was treated worse by the female registrar.

Get to your doctor as soon as you can, if only to get properly diagnosed and your mind put at rest.

Regards

Lin

Patient Admin Team

Hi Lin

Thanks for your reply. The breathlessness has been a real issue. I have horses and it is becoming increasingly difficult to manage them due to the physically demanding issues...ie cleaning stables, carrying hay bales etc. Some days I'm so out of breath I have to sit down every 10 minutes or so. I have even had chest x rays in the past which showed nothing and the GP said my lungs are clear. I had started to think I was so unfit and lazy I'd have to part with the horses. I told a GP over 3 years ago I was experiencing large clots during my period. She seemed to find this amusing and told me this was normal. I'm 42 and have 2 grown up children and grandchildren so that sid of things isn't an issue. I have prolapsed discs from a riding accident in my teens and so the doctors have told me the back ache is expected although I know it feels completely different from the disc pain and has now been continuos for over a year. People tell me I'm walking like I'm pregnant all the time. I sometimes wake up in the night with severe pains in my back passage which I can only describe as being very similar to being in labour. Im still waiting for a GP appointment and will probably have to admit defeat and see somebody different, although after years of this I feel like nobody is really listening!! Anyway thanks again for your reply, it is comforting to know I'm not going mad and imagining it all. Well done on the walk, especially due to the circunstances, you are an inspiration.

Regards

Dee

Hi Dee

I had identical problems to you about fifteen years ago (I was 40).

I'm amazed your GP hasn't referred you to a gynaecologist before now. It sounds highly likely that you have fibroids, and also that you are, and have been, severely anaemic for a very long time. This should have been picked up with a simple blood test - breathlessness is one of the commonest signs of anaemia and with the amount of blood that you are losing is the obvious reason. Large clots are not normal.

I would suggest that you definitely see another GP and insist that he or she refers you. Hopefully you can see another female GP, but try not to worry too much if you can only see a male - it's nothing to them - and in all probability the gynaecologist will be a male. You need to have something done now. I had a hysterectomy performed and it was the best thing I could have done - I very quickly bounced back and it was wonderful to be free of the pain and the mess!

I would also suggest that you buy a bottle of Floradix iron supplement from a health food shop - the liquid works much quicker than the tablets.

It will soon boost your HB levels - it was a lifesaver for me!

Good luck and don't be fobbed off - you must insist on a referral.

Katie

Hi Katie,

Thanks for your response. I actually did have blood tests a few months ago as I was so tired and felt like there was a huge lump in my throat. One of the tests was actually for anemia and came back that I was OK. However I have been informed and also found on the net that fibroids can actually put pressure on the diagphram causing breathlessness. I have just had my evening meal and I am quite breathless now, so I believe there must be some truth in this. Sometimes just a cup of coffee can cause it along with the feeling Im full to the top as I already feel quite bloated before I eat of drink. The severity comes and goes but is nearly always worse just before a period and slightly better just after. I feel completely drained beore and during. My periods arent too bad for the first day or so then I have 3 days of flooding, then it all goes away for a couple of days and starts again for a few days. Then theres usually a gap of about 26 days til the next time. On a 'good day' I think I'm over reacting but on the bad days it actually interfers with every day life and I would like to feel normal again instead of like an achy balloon waiting to pop. I am going to call the GP again tomorrow and ake whoever I can get. I hope I feel dreadful tomorrow i will give me the kick up yhe butt I need to insist on a referal. Many thanks for your help, I'm so glad you are now fibroid free and feeling better.

Regards

Dee

Hi

Just so you are aware there are lots of treatments available if you are diagnosed with fibroids. one of the common options now is a treatment called uterine fibroid embolisation or ufe for short which is done as an overnight stay in hospital and you should be back on your feet within a week unlike hysterectomy which can take months to recover from. see your lcoal gynaecologist and make sure you go armed with lots of info on hysterectomy, myomectomy and ufe. more info on ufe is available from fibroid network online which is a patient info web site. i believe there are to be some discussions on radio 4 on the subject next week

regards

sam

Hi Sam

Thanks for that information. I have been trawling the net til my head is buzzing!!! I will definatly have a look on that site. Is UFE the treatment which they say hasnt been around long enough to know what the long term affects are?? Mind you, with my life style and responsibilites (as with most women I expect) being out of action for a week as opposed to months would be much more bearable. Although 6 weeks off work would be nice! I'm off to have a look now. Thanks a million.

Regards

Dee

I was told today that my constant bleeding and the deluge this morning containing clots was probably due to a fibroid and a feel of the stomach seemed to endorse this - I was actually quite relieved as always worry about the big C being the problem despite having a recent clear smear. I was very reassured to get on the web to find out more and find out such useful firsthand information on what to expect when I have a scan. It also explained why I keep telling people that I am getting fat and 'my stomach doesn't appear to belong to me' as I have felt that for a while.

omg im not going mad anymore been to docs 2day...and guess what i have fibroids probably size if an 8 week pregnancy ???? have been weeing , fat belly heavy periods and now i no what it is had a smear six weeks ago and said there were some cysts....worry worry crying etc but she said prob nothing, had an examination and there u are now have to chose weather to have merina anyone else told them this shrinks firbroids etc i was sick with worry about being the big c but now have to decide what to do DONT want hyst just being sterilised ha ha what a joke wish i had found this out last year may have saved agro as i had an old colil removed for a sterilisation x

Thanks for your replies Lambie and Staffygirl. I know what you mean about getting fat and your stomach not belonging, mine feels like its getting places before me. Waistbands on jeans etc feel really uncomfortable unless I wear things at least a size too big. I also worry about the big C as I lost my Mom to Pancreatic cancer 3 years ago. Unfortunately my daughter has had some problems lately (non medical) so I have been sorting her out and have her and my granddaughter staying with me at the moment so my fibroid worries have been on the back burner for a while. Strangely my last monthly curse was nearly non exsistant although I still had clots and mega cramps. I have read that sometimes if fibroids get big they can actually stop periods. A friend of mine missed hers for months due to them too. Im seeing a nurse regarding something unrealted this week so I'll mention it and see if I can get the ball rolling so to speak. Keep us posted on your experiences/ treatment and recovery its all very interesting. Good luck to both of you!!

Thanks

Dee

hi dee (from another dee LOL ) i am sure you will be talked into having a merina like i was , will reduce the fibroids , light to no periods, no fat belly , i was really taken with the idea yesterday but not so sure today, have had really bad pains since she gave me an internal yesterday but keep wonering if she has really convinced me i no i have to give it a go , but she has sent off for a scanand a water test which i have to see what happens , but now i am paranoid about the fibroid getting bigger ,its about an 8 week preg at mo ??? means nothing to me , just craps me to think about it i think ive worried myself into more pain , if thats poss , maybe i should think about something else and the pain might go !! im only 41 and dont fancy another op but what option do i have apart from this x

Hi Dee

Sorry to hear you are having more pain. What exactly is a merina? I have had to cancel my appointment tomorrow as something unavoidable has come up. Im waiting for them to get back to me with another appointment at the moment. Have to say I'm not feeling too bad at the moment, just fat and uncomforatble. Wonder why the different symptoms increase and decrease. Someone said its all down to hormones, ovulation and the monthlys. Probably right, I should keep a diary. Im almost the same age as you, 42. Praps we should wait and suffer til the menopause kicks in and shrinks them natrually. LOL. Keep me posted on your progress and thanks for your reply.

Dee...x

Hi again Dee

I have just had a look on the net for Merina. Ugh...its sounds horrible. I never liked the idea of coild for contraception, I'm all sqeamish about things like that. The website I was on said it has been successful in shrinking firoids but not in all cases and when someone has large fibroids the Merina is unlikely to stay in place. Plus the thought of all that searching for strings and follow up appointments etc. My teeth are on edge just thinking about it. Alot of my friends have coils and are perfectly ok with them so don't let my opinion put you off but I doubt I'll be going down that route although it does seem like a better alternative than surgery. There are also lots of natural methods which claim to have amazing results which I may try but a bit worried about wasting money. Anyway...keep me posted.... Dee. x

hi girls

well i feel even worse today now i no what the prob is , probably getting myself in a twist bad wind ,vey fat not so much weeing 2 ay and i think im getting out of breath ,maybe thats worry , i dont no what to do ifeel so fat its doing me in , and i assume they are only small about the size of an 8 week preg i dont no whether to have the coil and b done with it for a while and see how i get on , im on msn withmy mum at mo and she seems i sholud have the op and b done with it, i was only sterilised last year and it took me ages to get oner that ,so a hys scares the crap out of me,im olny 41 what is evryone else doing about things at mo x

Hi

Sorry to hear you arent feeling good. It really does come and go doesnt it. I get the breathless thing too, its horrible and uncomfortable. Its a shame theres not a magic pill to sort these squatters out all in one go. Ishould imagine being stressed out and worried about it all adds to feeling unwell. If youre ok with the coil I'd give it a go and see what happens, it might be just what you need and sort it all out for you. You can always make a decision about an op at a later date if youre not comfortable about it now and you may not have to if the coils works its magic. Good luck with whatever you decide.

Hi Lin

I was delighted to read your reply, i have loads of fibroids and all the symptoms that go with them, i found out yesterday that my largest one is now the size of a melon and is pushing on my bladder so gyn has booked me in for a hysterectomy, which im nervous about, but i actually feel great after reading your message and am now excited to get my life back!

THANKS

1

sal

[quote:79e79fadcd=\"Anonymous\"]Hi Lin

Thanks for your reply. The breathlessness has been a real issue. I have horses and it is becoming increasingly difficult to manage them due to the physically demanding issues...ie cleaning stables, carrying hay bales etc. Some days I'm so out of breath I have to sit down every 10 minutes or so. I have even had chest x rays in the past which showed nothing and the GP said my lungs are clear. I had started to think I was so unfit and lazy I'd have to part with the horses. I told a GP over 3 years ago I was experiencing large clots during my period. She seemed to find this amusing and told me this was normal. I'm 42 and have 2 grown up children and grandchildren so that sid of things isn't an issue. I have prolapsed discs from a riding accident in my teens and so the doctors have told me the back ache is expected although I know it feels completely different from the disc pain and has now been continuos for over a year. People tell me I'm walking like I'm pregnant all the time. I sometimes wake up in the night with severe pains in my back passage which I can only describe as being very similar to being in labour. Im still waiting for a GP appointment and will probably have to admit defeat and see somebody different, although after years of this I feel like nobody is really listening!! Anyway thanks again for your reply, it is comforting to know I'm not going mad and imagining it all. Well done on the walk, especially due to the circunstances, you are an inspiration.

Regards

Dee[/quote:79e79fadcd]