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Nerve pain and large fibroid

Posted , 7 users are following.

Micramary
Micramary

I've just come out of hospital, having been admitted due to chronic pain. I had MRI which showed 10cm fibroid, benign cyst and thick lining of uterus - I'm 53 and pre menopausal. I have been having sever nerve like pain in buttock and goes down leg. I assumed gyni consultant would put this down to fibroid pressing on nerve. However, she was adamant pain nothing to do,with fibroids and ordered MRI for back which orthopaedic looked at and said was fine. She was still certain the pain and my enlarged uterus were not connected so has referred me to physio and out me in Esmya, and I then left hospital with many pain meds. These get me through the day with a background niggling pain, occasionally peaks and I roll for a bit. She is away at present, but will see me when gets back, my husband has made a private appointment with consultant who is covering. I am so sure the two are connected as they began together. Is he likely to disagree with a colleague? I can't go on with this level,of,pain - when I was admitted to hospital it was via a&e due to pain, and I'm scared the pain may escalate again. Any views/thoughts welcome. 

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  • Micramary
    Micramary

    Posted

    Realise this duplicates previous post, meant to merge. However any thoughts on how to approach consultation tomorrow would be appreciated.
  • christine65130
    christine65130 Micramary

    Posted

    As I said on the other post, I do agree with you, not sure how to convince the other consultant though. On a positive note, I've found that Esmya does soften the fibroids pretty quickly and this for me helped greatly with the sciatica, so hopefully it will help you too. Please post how you get on.
    • Micramary
      Micramary christine65130

      Posted

      The one positive thing is that my gyni is off for a few weeks, so I can approach is more from pain, rather than pure second opinion. You just never know whether they are willing to say different to a colleague. Surely ethically they should. I am very nervous; my husband wants to come in because he thinks I underplay things. 
    • christine65130
      christine65130 Micramary

      Posted

      Yes it's a good opportunity, maybe you could bring it up as a new thing, so that they don't feel they are contradicting a colleague. I understand the nerves, I never manage to say all the things I want to.
  • Bek
    Bek Micramary

    Posted

    Hi I had a huge fibroid a few years ago and I can tell you had very similar pain. I am convinced they are linked, pain in hips and legs but as it turned out almost the opposite side to the fibroid.

    Initally they would not give me painkillers (saying it was a cyst on my ovary) and I like you ended up in A&E which is when they found out it was in fact a large fibroid. I sympathise with the pain, it is excruciating. I had lower back pain that was agony, my back would swell up, the pressure on my bladder was horrific and I was unable to eat solid food.

    My advice is, if possible to have support with you. I was often on my own during an initial scan and feedback when they told me it was a cyst and I may need an ovary removed. I never had another scan after, but when I kept telling them it was worse and getting larger they asked me how I knew (trust me my stomach was fairly obvious).

    Please take someone with you for moral support, I ended up in hysterical tears after being told to pay for my prescriptions (which I only needed due to the mess up).

    If you can go private, please, please do. You'll be seen quicker, it took 8 months for my second op to arrive (long story) and by that time I had not eaten solid food for 5 months, my weight dropped by over 3 stone. I was 34 at the time.

    From experience, after my trip to A&E they performed a laparoscopy (as the fibroid was too vacular to remove) then put me on zoladex which didn't work. The it turned our my fibroid had degenerated, which was pretty painful.

    Firstly make sure that you have regular scans (if possible) to monitor the size of the fibroid. I wish they had done that as mine was only scanned once at 10cm and was 23 x 23cm in the end!!!

    Find out what the maximum painkillers you can have is. Near the end I was given tramadol, plus other painkillers but they stopped working. Ask about the chances of it degenrating, mine outgrow it's blood supply rapidly (although it could be linked to the wrong medication initally).

    Find out the wait time, as I know how you feel. I ended up with kidney pain etc.

    One thing I woudl say is find out what the outcome will be, will they do a myeomectomy horizontally/vertically? What are the other options? Recovery time can be a slow process.

    Any questions ask and I'll try to help. 

    Make sure they talk you through all options and please take someone with you, it can be quite daunting doing it all alone x x

    • Micramary
      Micramary Bek

      Posted

      Thanks. My husband is keen, but I'm worried he'll get abrupt as he's watched me in this pain for a while now and can't understand why the link has been dismissed out of hand. . I'm on pregabalin plus other meds, take the edge off some of the time. Honestly, I'd have a hysterectomy if the pain would go. Taking all these meds for however long is not appealing. Hopefully it's a positive outcome. 
    • Bek
      Bek Micramary

      Posted

      Hi Micramary, I have to say my doctor ended up telling me those who yell loud enough...........the thing is you are probably not feeling well enough to take all the information in or put your foot down.

      I totally understand, I spent most of my time unable to walk and in a pain I would never wish on anyone, very emotional and totally exausted. Your quality of life is not good at all and I honestly remember how the pain feels. I hope that is you can get someone to see you as more than a number that will make a difference, rather than trying to talk to a receptionist on a phone or being passed from doctor to doctor.

      I found hot water bottles, painkillers helped slightly. I have to say I had to change my diet, meat and carbohydrate were agony, but in the end I had to manage on soup and smoothies. I know that probably doesn't help at all, but I found it helped a little. 

      Please do be firm with them and don't worry. The other option is there is  PALS service (Patient and Liason Service). You could raise an issue and have it investigated, whether or not that would speed things up I have no idea. 

      Don't over-exert yourself, lift anything heavy or put any additional pressure on the back etc.

      I hope that helps, just a few things I did. Good luck, let us know how you get on x 

    • Micramary
      Micramary Bek

      Posted

      Thank you so much. Sometimes I feel like this is going to go on for ever. My pregabalin dose has been increased today and I've been given oramorph. The GP was sympathetic and said to be clear with consultant tonight. She'd heard of him and said was a nice one. Fingers crossed. I'll let you know.  All these comments really do help. Thank. 
  • f91864
    f91864 Micramary

    Posted

    I responded to your post last week. Sorry to hear your stll suffering pain, its good that orthopaedic have ruled out anything to do with your back.

    You need a second or third opinion from an independent expereienced gynaecologist, not one related to the same practice as the first gynaecologist. Gynaecologiest like any other professonal are different some are more experienced than others and may specialsie in different areas -  large fibroids, multiple fibroids, embolisation, open momectomy, key hole surgery, some believe in prescribing Zoladex, Esmya drugs to shrink fibroids prior to surgery or menopause and some dont, some will refer you to another gynaecologist when your issue is beyond their skill level.

    The whole purpose of booking a private consultation is so that you can choose a more experienced gynaecologist that specialises in your particular issue  and get an expert opinion on solution or options to make an informed decison  or pass onto your Doctor.

    I am not sure where you live, but you may be limited with choices because of that. In London there are number of experienced NHS gynaecologist who work privately and there is more choice. Its always good to do your research online and then choose the best consultant for your issue.  The best gynaecologists in London tend to have both NHS and Private expereince and a profile stating what they specialise in.

    Depending on the position of a large fibroid, you can get chronic pain. Hopefully the physio and Esmya may be give you some relief soon.

    • Bek
      Bek f91864

      Posted

      Great advicce f91864, I wish someone had given me such great information too before hand.

      I have to say I really didn't know much at all prior and still find out new things every day even now........good advice smile

    • Micramary
      Micramary Bek

      Posted

      The gyni I'm seeing works at same hospital as my consultant, which is why I'm worried how independent he'll be, but it works in that I'm in the system so would be addressed more easily if needed operation.i am trusting his ethics I suppose. I had a bad night last night waking hourly - I just can't go on like this. I will see my GP this mining for advice. 
    • Bek
      Bek Micramary

      Posted

      Hi Micarmary, I had sleeping tablets for this, but they didn't really work. The best thing I could do was sleep with lots of pillows (on my side) supporting my belly, it just helped for me. May not for everyone.

      Well done with your appointment, I agree with Patricia who says do your reasearch, I struggled with this as it was misdiagnosed so felt very misinformed.

      How do you feel about what was said today? Did the consultant explain much to you? It is quite a lot to take in, but whatever you do give yourself time to think a little and find out more about it all.

      Are they giving you enough for the pain to make it manageable? x 

    • Micramary
      Micramary Bek

      Posted

      Pain wise - my GP keeps on increasing pregabalin so I'm now on 150mg twice a day plus paracetamol, codeine and ibuprofen up to 4x a day it just about gets me through the day with a slight nagging pain sometimes. I think due to my age and fact that the ,arrest fibroid is degenerative, hysterectomy was deemed the best option. The consultant didn't push this on me and has said that he can't guarantee my nerve pain will go, as there's no way of being absolutely certain the fibroid and enlarged uterus is the cause. hiwever, he would say this is the likely cause and so best course of action - and this is what he would say if it was his wife! My husband hIs now doing a lot of reading as I don't want to get too anxious about it all. 
  • patricia27802
    patricia27802 Micramary

    Posted

    Hi I just had a uterine fibroid Embolisation procedure 4 weeks ago. I have a 10cm Fibroid but no cyst. I have a pain that moves from my right buttock to my right thigh it aches if I walk to far. I was told its normal after my procedure. You are the second person on this website who has described this kind of pain who has not had the procedure so it's makes me wonder if it's the Fibroid causing it rather than the procedure. I don't know if this is the only pain you are experiencing. But I know it's bad enough. The only thing I know for sure is Esyma is given to shrink the Fibroid pre surgery.

    I am getting better cos my procedure gradually shrinks the Fibroid by cutting off its blood supply. There is lots of info online on treatments for Fibroids

    I was given choice of medication or Hysterectomy I refused both and insisted on I wanted UFI done by radiology (Gynocolgy didn't want to refer me)

    Having said all this it may be different if you have a cyst. Do lots of research when it comes to having the Fibroid sorted. I made the mistake of not doing research and just taking Gynocology at their word which made me suffer more. I'm not saying that all Gynocologists will do but some will.

    With regards to your pain I think you are right

    • patricia27802
      patricia27802

      Posted

      And I hope you get it sorted really soon x
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