Fibroid Fury!

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Hi everyone ,I am 52 and  I was diagnosed with fibroids last August after feeling sick every day  constant lower back pain and shooting pains in the vagina and tummy. After several water infections and anti biotics later I said enough is enough and went back to the doctors yet again and she found a lump in my lower tummy .1 week later I was sent for a scan where 2 x 9cm fibroids were discovered and many smaller ones. After seeing the gyno he gave me a choice of hysterectomy or Esmya  so in January 2017 I was hopeful these would work. I must say I felt better on them could even bend down without pain . After finishing the 3 month course the symptoms returned. Yesterday I went for another scan and its revealed that there is no shrinkage at all in fact she said they look a little bigger. Now I need to wait 4 weeks to see the gyno again where I hope the hysterectomy is still an option and get rid of these freaky fibroids that have changed my life since last August.The one question I do have is does anyone else NOT suffer with heavy periods with fibroids because my periods are light but painful .

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  • Posted

    Hi Julie - There are 3 types of fibroids and the submucosal are the ones that are most likely to cause heavy periods. I had all 3 types but once got rid of the submucosal one , my periods are back to being manageable.  The other ones are submural (in the wall) or subserosal ( on the outside of womb). Perhaps you have subserosal or submural. Mine were not as large as yours admittedly but I pursued eysma for a second course of 3 months after a 2 month break, and have now been OK for a year and hoping it will be ongoing. If not I would take eysma again as prefer to avoid surgery. Having the two 9cm ones removed via a myomectomy may be another option? ( I am not a doctor of course).  The gynaes are quite quick to offer hysterectomy to get rid of everything, but if you are fine with that then that's OK. Just make sure you are fully informed about the operation and what's involved and any other options before finally deciding. Do your own research maybe. It sounds like you want one as your symptoms are affecting you so much. I hope you find a solution that works for you. Good Luck 

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  • Posted

    Hi Julie,

    I did not have heavy periods with my one very large fibroid. It did cause me back pain and bowel issues - mine was outside the uterus - and was the size of a coconut. I had my hysterectomy 2 weeks ago - full abdominal and had the one ovary I had left removed. The back ache I had been suffering has gone completely as has the sciatica type pains I had down my legs. The consultant I saw said I could have taken something to try and shrink the fibroid - but was very doubtful it would help in my case. I was quite happy to go ahead with the surgery. It should still be an option for you as the Esmya does not seem to have worked for you. Good luck!

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    • Posted

      Hi Glennie, how are you feeling? You really have given me hope that I am making the right decision, so blooming scary! I am on the list to have a TAH but if possible I would like to keep my ovaries if they are not too manky! I really hope that having this op will get me on track to living my life again!

      I wish you a speedy recovery

      Barb x

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  • Posted

    Hi Julie, so sorry to hear you too are being plagued by these pesky fibroids too! I am 52 and have been having lower back and pelvic pain, aches in thighs, constantly feel like I need a wee, bloated tummy (look 4 months pregnant!), hair falling out........all but to name a few! I eventually got to see a consultant after months of nagging and was told I have an enlarged uterus with fibroids, I have tried Provera ( bled constantly the whole time I was on it!) and am now finishing my second cycle of Esmya with the third cycle lined up to take after my two month break. To be honest Esmya was a god send and really helped me to have a break from the pain and bleeding (could actually think straight) but I feel so tired and spot all the time (I have shares in bodyform!), I do have other mild symptoms but nothing major and compared to how I was before I felt so much better, but during the break the pain was off the scale (bleeding was not so bad), I never have time off work but was totally knocked on my backside and had to spend days in bed! I have made the difficult decision to have a hysterectomy as I just want it to stop and get my like back! It has done it's job and I have got my head in the right place to get rid of the offending bits so I can get on with living, this has taken over my life for the last three years (at least!).

    Really isn't much fun dealing with all of this but wish you well, I just hope that after I have the hysterectomy (so scared 😥wink I will feel more like my old self! Good luck.

    Barb x

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    • Posted

      So glad I found  this forum. To shell69386 I apparently have subserious fibroids  the 2 large ones are on the uterus wall and the smaller ones are in the uterus thats what the paperwork says .I think I pinned my hopes on Esmya working for me as it has an 80% success rate however no periods for 3 months is any womans blessing and all my sickness , backache ect disappeared whilst on them and only had night sweats and a few weird nightmares as side effects , given the choice rather be on them than not.Looking forward to the 5th June to see what the gyno decides what my options are.Glennie you give us all hope a very speedy recovery might need some tips off you later x Barbara when is your hysterectomy if you don't mind me asking?

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    • Posted

      Hi Barbara, i have exactly the same symptoms. I am on esmya for the second time now ..I constantly feel very bloated especially after eating I feel more uncomfortable... severe lower back and pelvic pain, pain in thighs, sciatica .... bowel pains too...uterus is the size of 4 months pregnancy, multiple fibroids, 4 large ones and about 6 little ones..I was sheduled 2 times for surgery but was to afraid to go through with it. .. I know that I will have to...can 't go with this life any longer.. I m taking tramadol daily ....now have severe pain in muscles, feet legs and knees due to esmya... I have 14 pills to go.. really don't know what to do after that...whising you well with your decision! I hope I will find the courage also...Nancy

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    • Posted

      Hi Julie, I have not been given date yet but on the "list" had email yesterday saying they anticipate Aug or Sept, I am terrified but am also terrified of living like this! I did A's if I could have them removed but said they are in the muscle and he felt it was possible they might grow back at a later date......eeeek, don't want that! I was rather hoping that I might start the menopause.......but no sigh of that either, could be having same conversation in 5 years time! It is so hard to make this decision......but think it is the best for me......and if I get shot of this post belly that would be a bonus!

      Barb x

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    • Posted

      Hi Nancy , I think you will find the courage to have the op when the time is right for you , only you can decide , For me I have only put up with symptoms since last August and reading on here many have suffered alot longer but i want my life back now selfish it maybe but I miss running , planning a night out with friends without having to cancel , going on holiday without worrying about feeling ill on the flight like last year . Yes its scary to have the op but in my opinion its scarier living like this xx
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    • Posted

      Oh Nancy, it is such a hard decision and to be honest I am terrified too! I have asked for other options but have been told that due to where they are and size of uterus my best option is to have it removed (no chance of the little sods coming back!). I also have been aches in my joints, did not connect this to Esmya.....does it cause this? I feel like a granny going up and down stairs! My tummy is so uncomfortable all the time, just can't wait for it all stop so I can get on with living without having to plan my life around "good weeks"! I have been told I can have 4 cycles of Esmya and then have to have a complete break (not sure if I could do another 4 cycles at a later date as apparently it has been approved for long term use) I am finishing my second cycle and although it is good and I have felt much better on it.......it still is not how I want to be feeling for years to come......hence my decision to push ahead with hysterectomy! I hope I have the strength to carry it through, but really want to get my life back on track! Have you explored other options if having a hysterectomy seems to much?

      Keep your chin up Nancy, I hope you find a way to find relief from these pesky fibroids, not much fun being female sometimes hey!!

      Barb x

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    • Posted

      Hi Barbara , Yes the list is another thing to get your head around isn't it not really  knowing when it could be so you can plan around it , not sure if your in the UK but its around 4-5 months waiting  I believe. What I find strange is a colleague at work has the same fibroid problem as me ( but with the heavy bleeding also) shes the same age but her gyno hasn't offered her a hysterectomy she desperately wants ,only given her pills and more pills and shes still struggling for the past 2 years she said! Last month he gave her HRT, now I was on that for 6 weeks and my doctor took me straight off them as it feeds the fibroids which makes them bigger! It even says on the HRT leaflet not to be taken if fibroids are present. Its the luck of the draw what treatment you get I think. The first time I met my gyno he looked at my scan results and said your options are hysterectomy or Esmya, so I gave Esmya a try first. Ill have to wait 4 weeks to see what he says about the latest scan, Ill keep you posted. x

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    • Posted

      Hi Julie, I am in the UK and totally agree that it seems to be the luck of the draw, my doc did try other pills first but quickly changed to Esyma when my hair started falling out (think I was very anemic!), I suppose compared to some poor women I have read about I am lucky that gyno looked laparoscopic results (now that was an experience I hope to never repeat! Tried without anesthetic.....I felt like such a wimp....ok second attempt with anesthesia!) and although he said could try other options in his opinion the quickest way to end this sorry saga is hysterectomy, no chance of the little sods coming back! I have always been quite active but at the moment in between bleeding, dizziness, aches and pains I am so blooming exhausted (new position at work too!) I just feel like I am functioning!! I just hope after all of this I feel like it was worth it, I can't wait to go for a long walk and not feel like I have a sack of bricks tied to my waist!!

      Do let me know how you get on with your scan, I will have my fingers crossed that you have "shrinkage" as Esyma does get good results......maybe I am to old ( but not old enough for the menopause.....typical hey!) 😜

      Good luck! xx

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    • Posted

      Hi me again... i am suffering with these fibroids since 2012 now.... where I ended up in emergency room for the first time! Ever since I have these severe abdominal pains evere single Day it really drives me crazy..I am on tramadol, I don't know if this exists in the UK I live in belgium....now I have these excruciating joint pains especially my feet which I blame on Esmya... even my husband says i am like a 80 year old woman sometimes😃they didnt shrink at all ! I even developped an inclusion cyst as well. They find soms adenomyosis too.... for the moment I am on a waiting list but first we are moving to another house next month so I will see after that...I cross my heart for whats coming after the esmya again... I really needs this surgery but haven't got the guts for the moment...I am 48 buy the way

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    • Posted

      Wow Nancy, you really have your hands full at the moment, I am not in the slightest bit surprised that you feel overwhelmed! Getting your head round how best to deal with fibroids is so hard, and so individual, no two people are the same and you are taking the time to work out what is best for you, if you are managing at the moment with Esmya (even with the aches.....i am worse going down stairs 😂wink it will give you the break to weigh up your options. I lived on codeine (messed up my tummy!)and nurofen for weeks, glad Esmya helped with pain! Having a hysterectomy is a big decision so I don't blame you taking your time, and with everything else going on you may feel more in control once you are moved and settled in (isn't moving one of the most stressful life events!). Esmya did not shrink mine either, although having 3 months off from the constant bleeding was very welcome......so it gave me time to get my head in the right place, but like you I am very nervous too, but my mind is made up now so just want these blooming things out of me! I have been putting this off for around three years so did not make a quick decision either, in some ways I wish I had done it sooner really as because I waited they are now too big to come out laparoscopic so having TAH.....but hindsight is always 20/20 isn't it!! I am just on my last two weeks of cycle two......dreading the break but maybe it won't be as bad as last time (fingers crossed hey!!).

      I hope your move goes well and that you do well after Esmya (i will have my fingers crossed for you), let me know what you decide to do for the future. Take care.

      Barb xx

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    • Posted

      Ok Barbara I will let you know, monday I have an appointment with another doctor see if there aren't any other options.... I pay around 400,00 euros for esmya is this the same in UK? They are far from free😕

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    • Posted

      Hi Nancy, think it is the luck of the draw in the UK, some seem to get it on the NHS......but others have to pay! Seems so wrong to me to have to pay for medication that you need to stay well 😥

      Good luck for Monday, catch up with you after to see how you got on

      Barb xx

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