fibroids ruining my life

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Really need some advice from from women who have fibroids. Really struggling. I have severe bleeding 24/7 (clotting), nausea, back pain, abdominal cramps. My consultant put me on gonapeptyl injection for 3 months which stopped the bleeding and improved my quality of life but that was only temporary and 3 months has finished now. Dreading this all over again. Want to start a family in next year or two. Contraceptive pill doesn't work and doctors don't want to operate because I'm so young and have no children. I have 5 fibroids in total. Where to go from here?

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  • Posted

    The title that you posted rang such bells for me as this is how I have felt for the last 18 months, I have had constant bleeding, massive clots included, (with no let up at all) for the last 12 months and periodic episodes of flooding.

    I really feel for you kb112. For me it is different, I had my children 21 years ago so for me, after all other options had been exhausted I had a hysterectomy and I have to say it is the best thing I did even though 2 weeks down the line I am still swollen and sore.

    My first port of call would be to see if your consultant could prescribe Esmya to try to reduce the size of your fibroids and this would then possibly enable a Myomectomy as this would leave you the option to try for children.

    http://en.wikipedia.org/wiki/Uterine_myomectomy

    Do you know the size of your fibroids and position of them? This also has a bearing on the treatments that are available to you.

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    • Posted

      Hi essjabee, your post could have been written by me, I should have gone into hospital Friday just gone for a blood transfusion I have lost almost half my blood volume, instead I opted for high doses of iron and stay in bed, as I am retired I am able to do so, I am waiting to have a scan done as a precursor to having a hysterectomy, I too have had my children a long time ago (37 & 39 years ago!), I too really feel for younger women like kb112 wanting to start a family.

      Out of interest, were you at any point prescribed iron supplements?

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  • Posted

    I too am struggling with fibroids. I haven't received an appointment to see a consultant yet. I bleed for the whole month of August 2013 then my periods got heavier and closer together. I have big clots but its the pain or cramping I feel on just my left side that is wrecking my life. It starts just under my rib cage then spreads down to below my pelvic bone. I read a lot of women have back pain but I've been told my back pain is due to oestoarthrits. I get maybe 3-4 days after my period finishes before the symptoms of severe pain, swollen everything and crying start all over again. Plus I gain 5-8 pounds during the lead up to my period and I can not shift this weight at all. I've even tried not eating for a day. No one has said how big anything is just that I have loads of fibroid lesions. I am a full time carer to my disabled husband and just want a hysterectomy. Doc recommends some sort of coil which I don't think will help and I finished my family 19 years ago. I guess I can't offer any advice other then to say don't stop going to doctor until you get them to sort you out. I will not give up whatever is going on inside me is getting worse and I would rather have it all out then wait for menopause to happen
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  • Posted

    billie, how long have you been waiting for an appointment to see a consultant? I know waiting times differ across the country but mine came through quite quickly.

    I know you say you want a hysterectomy but please remember that this will impact on your ability to care for your husband for quite some time, do you have anyone who can help you with the care while you're recouperating??

    I hope you get something sorted soon x

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  • Posted

    I haven't received one yet. My GP said she would refer me over in September and then I went back in early December and they said they would request again. But I don't think my GP cares and I also don't think the referral has gone through. But this morning at 630am after being in severe pain all night and bleeding since Dec. 27th I could no longer wait. So I went to A&E. My blood pressure is up 163/107 which explains why my head feels so bad. The pain was to bad. I didn't get to see an A&E doc I saw a GP out of hours doc in hospital she examed me prescribed the same pain pills I'm already on and a new one called norethisterone the pain in my side is starting to ease a bit. However they can do nothing for me. She would send a letter to my GP and they would get it on Monday that I should call my GP she is recommending that my GP see me in clinic and speed up the referral. And yes I'm fully aware of the recovery for the surgery like all things that cause me to be ill we have things in place for his care. But after speaking with the A&E nurse I think it will take over a year for me to have the surgery. I am trying very hard to think of a way I can cope with this but if my own GP isn't backing me I will go around her. We have help in the form of my husband's parent's who don't understand his condition and think if he just gets fresh air he will be fine. My son's when they aren't working and my beautiful daughter in law to be. My eldest son is getting married in July of this year and the stress of all that is very hard to cope with when your on your period all the time. My husband gets worse when he knows Im not well because he is afraid I will put him back into the mental hospital like I had to do once before. But we are dealing with that and agree that this has to stop
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    • Posted

      Hi Billie, 

      I am in very much the same position as yourself.  I have a large fibroid (when last measured it was 19cms) that is causing me a good deal of problems - heavy bleeding, clots, headaches, flushes, cramping.  You name it I've got it.  My husband is a lot older than myself (almost 83) and I dont feel I can leave him on his own.  I also want a hysterectomy but my doctor told me this week "hysterectomies arent very fashionable at the moment".  I went to hospital and had a pelvic ultrasound yesterday, but the sonongrapher couldnt see the lining of my womb because of the fibroid.  I now have an appointment on Wednesday (3rd Sept) to see a gynaecologist at hospital, so I dont know where we'll go from there.  Anyway, I wish you all the luck in the world and would just say keep pushing for what you want and sooner or later (hopefully sooner) you will get what you want.

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  • Posted

    I also was prescribed Norethisterone as well as Mefenemic Acid, Tranexamic Acid and at one point also Esmya.

    I seemed to have more results with the Norethisterone combined with the Mefenemic & Tranexamic Acids than I did with anything else but nothing really worked properly. I was lucky in as much as my GP and my Consultant were both very sympathetic to the suffering and pain I was experiencing.

    It can take up to a year as the A&E nurse correctly said but if your symptoms are worsening then they can bring treatments forward if necessary. They had to with mine as my bleeding became constant with no let up and I was experiencing periods of flooding which were quite traumatic.

    Is there more than one GP at your practice? If so, you could try seeing one of the other doctors who may be more sympathetic to what you're going through??

    Failing that you can complain about your treatment or lack of it either through the practice manager or if that is not a route you are comfortable taking then you could complain directly to NHS England (I have the address if you ever need it).

    There is also the option of contacting your PCT and going down the self referral route also if they are still not listening to you and under the Choose & Book rules you can also choose which hospital treats you (if you have a choice of more than 1 locally that is).

    I know you may probably be aware of some of these options but if not, then I hope the information I gave can help you in some way.

    I am here if you need to talk and wish you all the best Billie x

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  • Posted

    Hi ladies,

    I' m suffering pain nearly a year, because of my fibroid.

    I went to see a gyneacologist and he put me on medicine for 3 months.

    But I fed up allways waiting 3 months - 3 months - 3 months, it's nearly a year mow!

    Have you got any suggestion? I just want to rid off that monster inside me and have a normal

    Life!

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  • Posted

    Hi essjaybee, thanks for your reply smile I have never heard of Esmya so I will read up on it ask my consultant about it. I haven't had a period yet since coming off gonapeptyl. My last dose was November 28th. Is it normal not to get a period for wks after the last dose? I have 5 fibroids and I know the size of them all. Two of them are 2cms and the other two are 3 cms and the biggest is 5cms which is the one that was causing the constant bleeding for 8 months straight. To all u ladies who have posted I really feel for u all. It ruins your quality of life and makes you feel so ill. Going to ring the Coombe on Monday to see where I am on the list for my D&C xxx
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  • Posted

    kb112,

    There is a forum on here relating to the Esmya titled 'Esmya Tablets Fibroid Treatment'. It's quite a long thread as it has been going for quite some time but most ladies seem to get very good results from the Esmya.

    For me it worked in shrinking my fibroids slightly but sadly not enough to relieve my symptoms but from what I can establish in the thread this is rare. My consultant is very impressed with the results that most of her ladies are getting from it, I think I was just an awkward case for her from start to finish. wink

    As I understand it, with gonapeptyl your periods can take up to 2 months to restart but if you're concerned I would ask your consultant.

    Please keep us informed of your progress. I am 4 weeks post op now from my hysterectomy, still feeling tired and drained but so much better than I was, I didn't realise just how ill I was before this.

    I feel so much for all you ladies who are still being affected by fibroids, I've had people say to me 'it's only womens problems, why are you making such a fuss?' Unless you've experienced the problems they can give you, it's hard to understand that the symptoms go beyond straightforward 'period pain'

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    • Posted

      Thanks Essjaybee, sorry I havent been online much, my laptop is acting up and havent been feeling like talking about it much but Ive decided to post more as I find it helps. Thanks for all your help. How are you doing?
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  • Posted

    UPdate. I took the Norethisterone 5mg three times a day for two weeks. It didn't stop my bleeding but it did stop the terrible pain on my left side. I stopped bleeding on Jan. 7th and starting bleeding two days after last pill on the 15th of Jan. This period was much lighter then ones before and I had no pain on my left side. Still I went back to my GP who it turns out did send my referral in Sept. another on 23 Dec and when I saw the GP again on Jan. 8th they sent a 3 request. the last two were urgent. Still waiting on appt. The pain in my left side still hasn't appeared. Which is so weird. What is weird is my liver function is now elevated. apparently because Im fat. Though I weigh 13 st.9 at the moment I am losing weight and have been a big girl all my life so why my liver would decide to act up is just typical. I had hot flashs on that pill though. My hormone levels are fine and Im not in menopause. I am looking forward to hearing what the consultant has to say
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  • Posted

    i been bleeding nearly 4 weeks the huge clots gets me down i waitin for my bod results i have never bled this long, i feel drained and tired all the time, maybe i have the same thing gettng worried and im always in tears 
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  • Posted

    Hi ladies. Well I'm back and still at square 1. Been referred to a new doctor in a new hospital and in ANOTHER pill. Been on this pill now for 1 month and I feel horrendous. I feel so angry and so sad all at the same time. I don't want to be on this pill. Periods are still the same since I was last on here 8 months ago. Can barely type I'm so in bits. It's making me suicidal. Cannot live like this anymore. My clothes get ruined, the bathroom rugs get ruined, my bed sheets get ruined. I go to the bathroom ten times a day to change my tampon and sanitary towel. I'm due a follow up appt this month. The hospital has refused to do a D&C. Dunno know what to do and feel very alone.
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    • Posted

      Hi Kb112,

      Firstly stop using tampons, I found that when I was using them they made my periods heavier and with a lot more clots.

      Secondly if your flow is as you say you'll have to do what I did and that is switch to incontinent pads as they are thicker and more absorbent. I use the tesco and morrisons brand. For bed time I use incontinent pants (they're like knickers) by tena lady, night time ones are great they allow me to have a good night sleep with no leaks. You can also wear them during the day if needs be. Give it a try.

      And thirdly red meat. I've had to cut it out of my diet as I found it aggravated my firbrod. When ever I ate it regularly my period would be very heavy and last longer too.

      Hope some of what I said helps.

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