Please help. Two doctors with different advice

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I went to my GP after experiencing excruciating abdomen pain and having difficulty passing urine. She referred me for a scan which showed a 15 cm fibroid at the fundus (top) of my uterus. I was in such pain I went to a private consultant who told me I would need a myomectomy. In the meantime I've seen the NHS registrar/consultant who said I didn't need surgery and should take esmaya. He said the only side effects are nausea. I've since read differently. I just don't know which way to turn. I'm a single parent. I already suffer with anxiety. I feel so alone and don't know what to do.

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  • Posted

    I should add that my symptoms have all gone. So I think it's on a stalk however the consultant said the scan said different.

  • Posted

    Hi Vickie sorry to hear your situation, its good that the cause of your abdomen pain has been identified as you can then get treatment. Fibroids are very common and many on this site will confirm that. 15cm is classifed as a large fibroid and they do grew so the consultant who said myomectomy was giving you one of the options available for treating fibroids i.e. surgery. This type of surgery is offered on the NHS as well as Private.  

    The consultant who asked you to go for esmaya wants you to take it to shrink your fibroid down. Some people take it for 6 months and manage to shrink their fibroid prior to surgery, or to a size that  causes less problems for them and do not have surgery. But my understanding is that you cannot take esmya indefintely. I believe the consultant who told you esyma only has nausea as a side effect was wrong, He may just be trying to minimise your anxiety but not telling you all the known side effects.

    You need to decide if your fibroids are still causing you problems and whether you can manage the problems with medication or whether you need surgery or some other option. Do you research and look at all the treatment options availalbe and make a decision. I suffered for 10 years with fibroids and finally had Myomectomy and am doing really well. Some choose to stick with medication or choose other treatment option. 

    There are many people going through issues with fibroids so dont feel alone, learn from this site, ask questions and research your treatment options. 

  • Posted

    My colleague at work is on Esmay to try and  shrink her fibroid and reduce the bleeding.  She doesn't complain of any nausea, but i understand it is a hormone so it possibly will have side effects but different for different people.  It's hard to know what to do when you have two doctors saying different things.  Glad to hear that your symptoms have gone away. I understand that a fibroid on a stalk can get twisted so maybe that was the cause of your pain and maybe affecting your bladder.  Might be a good idea to remove it in case it happens again, the scan would show whether or not it was that particular type of fibroid.  All best wishes, whatever you decide you can always decide not to make a decison right now to and go for watchful waiting and see how things unfold.

  • Posted

    Hi, I am in my 20s and due to have a myomectomy soon. My consultant told me that esmya is only a short term fix as they only give up to three courses of treatment and when the treatment has stopped the fibroids will grow again. Although with surgery fibroids can return at a later date but it's the only way to ensure current ones are removed or stop them continuing to grow and causing more problems. Hope this helps.

  • Posted

    Hi sorry to hear about your pain. I finally had a myemectomy in January this year after 4 years fighting first to get the doctors to agree I had fibroids and then to get them removed. Even in the morning of surgery the surgeon asked if I really wanted to go ahead with the surgery as it really wasn't that big (5cm) and as it was on a stalk probably wasn't the cause of my pain and problems. I like you suffer from anxiety and this did little to help. Anyway during the surgery they found another fibroid - I'm not sure how big it was but it weighed 1.5kg!.

    I was never offered anything but surgery or doing nothing and continuing with pain meds. I am so glad I opted for the surgery. I can't say I'm completely pain free as I still get cramps around my period but not so bad that I can't get on with things. My stomach is also flatter and I no longer looking pregnant all the time. I just generally feel better all round.

    I hope you get some more help from the consultants- I found I had to push hard to get to this outcome but I feel it was worth it. Good luck ??

  • Posted

    Hi Vickie,

    My fibroid was 10cm and was causing bladder problems - frequency, retention, etc. My doctor said the fibroid could cause permanent nerve damage to my bladder if it wasn't removed. I opted for hysterectomy because I'm 46 and not concerned about fertility. I first tried watch and wait and all that happened was the fibroid tripled in size. If you're getting conflicting opinions, perhaps you should ask your GP for help sorting through it all?

  • Posted

    Hello Vickie, glad your symptoms are gone for now but no doubt they will return again, and the fibroid will continue to grow. I have been taking Esmya off and on for over a year now, and it has helped to shrink the fibroids (I have many), but it isn't a permanent solution.  However it may shrink your fibroid while you consider your options and get further advice. Esmya has menopausal side effects and some people feel dizzy, and have headaches, but it did work for me. 

  • Posted

    Hi Vickie. I would see that as just two opinions and two choices to consider. Both apply, you can do either. Surgery should be the last resort really and it may be worth trying Esmya to see if you get results that mean you can function before considering surgical options, they can help to reduce them or stop them growing but its not permanent , the results can last a while and then you may need to take again.         I use Esmya periodically to manage my fibroids because I would rather avoid surgery.     Its your choice and your body never forget.   When reaching menopause the fibroid should reduce naturally we are told.    If you have no symptoms you can leave fibroids. It is if they are causing bother you can consider what options to try and what is best for you.   Good luck x          
  • Posted

    Hey V my 19 year old had horrific pain and catastrophic blood loss with 12cm fibroid. She had no hesitation in following Gynae Advice for open myomectomy. The other option was embolisation. She had course of zoladex subcutaneous implants, 6 months, then the op at end of January 16. She is now on a back packing holiday in Europe. First period came first day of trip / no big deal . I think each case is different. Reckon I'd chat a bit more to consultant if I were you. We were lucky as ours really took my girl under his wing. Good luck. These things are awful

  • Posted

    Hi Vickie

    I have been on Esmya for over 2 months now as I have 2 fibroids. I haven't had nausea but have slight fluid retention and mood swings. I am coping with these and overall I have felt well. Hope this helps x

  • Posted

    hi Vickie,

    sorry to hear about your case. seriously, am not a fan of myomectomy. i have had it twice and it still grew back a 3rd time.i would advice you try another treatment. say embolization. Esmaya i understand is to prepare you for sugery after like 3months. it is to shrink the fibroids to a certain level so as to make the sugery easier.i also understand if you stop it, they tend to grow back like twice the size if you dont go for sugery. but embolyzation is more like a permanent solution. its expensive but easier. good result is achive like within a period of 6months depending on your system. i had it in the month of june. i used to have heavy massive bleeding like my intestine would drop because the fibroids were very huge bigger than your 15cm. mine was almost 25cm. but now the bleeding is lighter and my stomach is reducing in size. the next day you are out of the hospital. you can read about it.

    • Posted

      I was told the same thing. Esmya is just to shrink fibroids so it's easier to have a different procedure, usually surgery. I chose not to do that and instead I had UFE in December. My largest fibroid shrank 70%. That sounds great, but my periods didn't change and, as my doc said, it's not just size - location of fibroids is often more important. I was trying to avoid hysterectomy, but finally gave in. I can't believe I waited so long, as all my problems went away when they took out my uterus. Because the UFE had shrunk everything, I was able to have keyhole surgery. The recovery was a snap compared to UFE. My doctor said 1/3 of women who have UFE go on to have a hysterectomy, so UFE is not always the wonder cure it is made out to be. Each case is unique - what works for one woman might not work for the next. Best to gather as much info as you can, assess what you are and aren't willing to do, and find a doc you trust to do whatever you choose. For me, I couldn't go in with the immense pressure in my pelvis any longer - it's been six years already and menopause was likely at least another six years away. By the way, I kept my ovaries, which resolves a lot of the bad things we associate with hysterectomy.

    • Posted

      Hello Murnaloo,

      i had my UFE and my period is changing, as in reducing. i just want to find out, when you have hysterectomy, does it affect your sexual drive? i was told it does. and you mention you kept your ovaries? what is the significance of that? because i thought once the uterus is removed you nolonger see your period. do you still have your periods? i just want to know all that

    • Posted

      Hi Ruth,

      Keeping your ovaries is advisable b/c that keeps you from going into menopause. They continue to produce estrogen, which is good for your health, esp. your heart. Your period comes from your uterus shedding its lining each month. With no uterus, there's no period. I also had my cervix and Fallopian tubes removed. I did this b/c my doc said at least half of ovarian cancer starts in your tubes and they serve no purpose if you have no uterus, and I've had abnormal cervical smears in the past, so no need to keep that and worry. Also he said current thinking is keeping the cervix does not give you a better sex drive than removing it, as all the muscles stay. I have not had sex yet, as I am still recovering, but my sex drive couldn't be any worse than it was with fibroids. My husband and I had sex twice in a year b/c the fibroids made me so uncomfortable. I thought I'd feel less womanly after the hysterectomy but that's not the case at all.

      As I said earlier, each case and each woman are so different. There's so much to consider. I tried least invasive first (UFE), but it did not improve my quality of life at all. Fertility was not a concern for me. I just couldn't continue to suffer (it had been six years already). I used to cry almost daily because I felt so bad with the fibroids. I had no life - I just existed. So, I finally gave in and said just remove it all. In my case, this was the right decision. Hysterectomy is not right for everyone, but there is a lot of scary misinformation out there. (The first doc I saw said I'd have to have open abdominal surgery and he'd take my ovaries b/c I "wasn't using them." What an ass!) Best of luck figuring out what your choice will be!

    • Posted

      thanks alot. quite informing. i have not had kids yet, will like to have 2 atleast. then i will consider that. sounds good. thanks alot
    • Posted

      Hi, just wanted to comment that for me, Esmya did not cause my fibroids to grow back bigger than before. I would say that after nearly 18 months on and off Esmya, the fibroids are now still smaller than when I started. Now it's been nearly 3 months since I last took them and the fibroids haven't grown back. For me the reason may be that menopause has finally kicked in, at least that's what I'm hoping! 

    • Posted

      Hi Murnaloo, Your situation sounds simillar to mine. I'm strongly considering UFE in the hope it will reduce my 12x13cm fibroid as Esmya & Zoladex haven't. I'm 46. I may end up with a hysterectomy but hope if I have to it would be keyhole after UFE. I have had a C Section though which I believe may make Keyhole harder because of scarring? Did you just go to your local hospital for UFE. Are you in thr \UK?

    • Posted

      Hi Heather,

      Yes, I am in the UK. I did my hysterectomy privately (I also did my UFE privately) because after six years of the NHS screwing up, I couldn't wait any longer. Before UFE, a gynecologist told me that I'd have to have open abdominal surgery, which I did not want. The UFE shrunk everything enough that I was able to have keyhole surgery with no problem. I am also 46, although I've had no children.

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