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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. 

0 likes, 34 replies

34 Replies

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  • Micramary
    Micramary

    Posted

    Have had my private appointment.  The consultant was very nice - my largest fibroid is degenerative, which he didn't like.  Whilst there are no guarantees the back pain is result of fibroids, he did say it seemed likely. He went through the different options, so I asked him what he would do if it was his wife! He said, due to the pain, he would opt for hysterectomy. So he is putting me in the urgent list - could be a few weeks could be couple months. Now I start to worry if I'm doing the right thing.  I did say to him - so my uterus with its fibroids and cysts is in a bit of s yucky state to which he agreed! So I suppose that will be gone. I think my husband is going to be doing a lot of reassuring over the coming weeks. 
    • Bek
      Bek Micramary

      Posted

      Hi Micramary, I have replied, but keep getting moderated. I hope you can read my reply soon. Patricia is right, she makes a good point about researching everything. 
    • Micramary
      Micramary Bek

      Posted

      My husband now has the job of research and reassurance! Tonight I've kept saying - maybe I just have tight gluts! To which he points at my cocktail of painkillers and still being in pain, and says Unlikely! I feel quite anxious right now so don't want to read bad stories about hysterectomies, if that ends up being my end result - which looks likely. Due to size of fibroids and cyst it will be abdominal. I will visit these forums as they are positively helpful and reassuring. So much thanks. 
    • christine65130
      christine65130 Micramary

      Posted

      Glad it went OK, I had a fibroid which degenerated, not the biggest one, it was incredibly painful and I was bleeding almost uncontrollably. So maybe  it will be best to get rid of yours fairly soon. 
    • patricia27802
      patricia27802 Micramary

      Posted

      I just wanted to add one thing. If your cyst and Fibroid are both in your womb can a Myomectomy not be done? may be worth asking the question as is sounds like a smaller operation.

      I really wish you a speedy recovery x

  • f91864
    f91864 Micramary

    Posted

    Dont rush into any decisions, get your husband to research all options:

    Hysterectomy

    Emboliisation

    Myomectomy (removal of fibroid and cyst) 

    Tablets to shrink fibroid - Esyma, Zoladex etc, these can only be taken for 6 months maximum because of effects they have on bones and usually prescribed by some surgeons before surgery (hysteroctomy or myomectomy). The fibroids  regrow once the tablets are stopped.

    Wait and see if menopause shrinks the fibroid plus Painkillers, Exercise, Physio, Acupuncture for pain management

    Sounds like your pain is under control and not as bad as before, which hopefully means you have time and a clear mind to look at your options and make a decision.

    I had multiple fibroids and daily pain (dont beleve in taking painkillers, so used exercise to manage pain) and recently had successful open myomectomy with the best surgeon in the UK for open myomectomy.

    My friend had fibroids and constant bleeding recently had successful hysterectomy.

    We both researched our options and went for what suited and we are both happy with the way things went. There are a lot of horror stories online for both myomectomy and hysterectomy but their both routine surgeries and under the right surgeon and hospital most people have a good experience.

    I hope you get a soluton soon.

  • Bek
    Bek Micramary

    Posted

    There's some really great advice on this forum and worth looking at. As you know I had an open myeomectomy, so I agree get as much research as possible.

    I cna genuinely say, that the pain afterwards was uncomfortable temporarily but nothing compared to the pain before. The fact your fibroid is degenerative like mine, then I understand how bad the pain is at the moment. I think that was when I was at my lowest. Happened at the same time as my wedding week abroad, bad timing.

    I can say from my experience, I was so relived to get my myeomectomy out the way and the pain afterwards is different to that from the fibroid, but in many ways for me no where near as bad.

    I had a horizontal myeomectomy and have to say my consultant was great. Although go with questions, perhpaps your husband can help. I as said had mine misdaignosed so my questions were not relevant and my first dose of zoladex was the day after my emergency A and E trip. I got told I would have hot flushes, ended up with HRT for my wedding to counteract the side effects, although I'm sure they are different for everyone. I assume as your fibroid is degenrative zoladex will not work.

    Can you get a second opinion? They managed a myeomectomy for me and my fibroid was a pretty large one, with 4 or 5 smaller ones. Can't remember all of it. I am sure all options have their pros and cons. Make sure you do what is right for you, as it is a huge decision to have to make. Although I remember how you are probably feeling, which is if anything could take the pain away I would do it. 

    Whatever you decide, be mentally prepared for it if you can. Main thing is to look after your own wellbeing and keep yourself as healthy as possible for any operation in the future x x

    • Micramary
      Micramary Bek

      Posted

      Thanks. There is a lot to think about. Thing is, the private consultant was a second opinion - original consultant persisted in saying she felt the nerve pain was a separate issue to the fibroids. She even referred me to orthopaedics and I had a MRI on my back - all is fine. I was discharged from hospital with a load of pain meds and esmya. My husband was not happy and emailed her to see if we could discuss it first her but she was away for a fortnight, hence the private consultation. You are right, at this point I just want it gone. He did talk different options, but with the cysts, fibroids and this large degenerative one and I suppose my age, he felt hysterectomy was the best option. It hasn't fully sunk in yet; today hasn't been a good day, I dare say there will be more of these. I shall sim to prepare my body and my husband will carry on with the research. Thank you again so much for all your suggestions. 
  • Bek
    Bek Micramary

    Posted

    Hi Micramary, Give yourself a little time to think as there is a lot to take in. It is an emotional rollercoaster. I am here to help if I can, but I think you need to rest and really look after yourself too as this is a really stressful time and it takes a lot out of you. One final piece of advice, pack your own hospital bag when you need it, my husband had to pack mine at the last minute, so packed everything he could find. I opened my overnight bag to pull out a bikini!

    Sorry, it made me laugh at least, but it hurt to laugh too! Hope that cheered you up smile

  • Micramary
    Micramary

    Posted

    I'm having major wobbles now, worrying that the nerve pain may not be gyni related. I think the fact that the first consultant was so adamant the nerve pain was one thing and the fibroids/ enlarged uterus another, causes me to worry when I'm feeling quite low. I'm even thinking of going to a chiropractor to get them to assess - painful it may be! As soon as I talk to my husband I feel reassured, but on my own the doubts begin. I think as there's no way of proving the connection, it's a case if weighing up probabilities - which is what second consultant said but he erred upon side of hysterectomy as he was also not liking the large degenerative fibroid. I've a fair wait and I know I will have doubts. 
    • patricia27802
      patricia27802 Micramary

      Posted

      Hi i have nerve pain it's not as bad as what yours sounds mine started off in my right buttock and now is in my thigh. I think you said the pain was in your back. Is there no one on here who has Fibroids and had pain in their back?. If it's not connected to Fibroid then treating the Fibroid alone won't get rid of it. I would find out if others have had this problem with Fibroids. Question I would ask Gynocologist is. How will having a Hysterectomy get rid of this back pain when you are adamant it's not connected to Fibroid?

      Either way I hope you find resolution and relief

    • Micramary
      Micramary patricia27802

      Posted

      No, my pain is in my left buttock and sometimes my thigh to my shin, not a sudden pain, always in my buttock, like a sharp permanent pain. The first consultant was the one who viewed the fibroids as not being connected to the pain. The second consultant is the one who has said it is probable, but can't guarantee as there's no way of proving - he is the one who has booked the hysterectomy as he viewed the pain as being the likely result of fibroids and also degenerative fibroids on their own can cause pain - so he's making the decision on the balance of probabilities. He has made it clear there's no guarantee. He did say this is what he'd advise his wife, when I asked him that. 
    • christine65130
      christine65130 Micramary

      Posted

      I'm sure it's related, I had an MRI and no problems were found with my spine. When I had a degenerating fibroid at times the pain was so bad in alternately my buttocks, lower back, upper leg, groin, lower abdomen, I could hardly walk. This COMPLETELY disappeared after taking a course of Esmya. We went on holiday to Mexico and I was walking 10 - 15 Kms  a day. The only thing that hurt was my feet! Then after stopping Esmya the fibroids grew again and I had pain again. Now on my 3rd course of Esmya, 20 days in, the sciatica has almost gone. I had a similar pain when I was heavily pregnant, and that too disappeared the minute my son was born.
    • Micramary
      Micramary christine65130

      Posted

      My back MRI was also clear. Your pain sounds just like mine; the second gynaecologist did say he didn't like my degenerative fibroid plus cysts, and hysterectomy would mean all gone. I'm on Esmya at the moment, and maybe I'd continue if I was younger, but at 53 I think hysterectomy is the best way. Thank you so much Christine, I've worried myself silly today - I dare say it won't be the last!
    • christine65130
      christine65130 Micramary

      Posted

      Well I"m 58 so I should be going the same way, but having the hysterectomy in Spain would mean me paying for it, so apart from the fear factor it's also going to be painful on the pocket! I'm still dithering.
    • debbie_18471
      debbie_18471 Micramary

      Posted

      I know this post is 2 years old but wondered what the outcome was of your situation. Did you have hysterectomy? Did it solve all of the pain you were having? I have exact pain with retroflexed uterus and 10 fibroids. The two largest equal over 6mm in size. About the size of an orange. I don't know what to do. Have been in pain for 3 1/3 years with fibroids not shrinking at all. I'm 50 years old and not in menopause yet. 

    • patricia27802
      patricia27802 christine65130

      Posted

      Hi Christine

      Sorry to hear you are still suffering. Is Myomectomy not an option? Cos at 58 you won't get any new Fibroids. I'm having a Laproscopic Myomectomy for my 7.5cm Fibroid. If not Laprascopic maybe open Myomectomy. May be worth pushing for if it's not more expensive that is x

    • patricia27802
      patricia27802 debbie_18471

      Posted

      Hi Debbi

      Is Myomectomy not an option maybe worth finding. I am 50 and waiting for a Laprascopic Myomectomy I had to push for it  though. I wasn't having a Hysterectomy as I don't believe my uterus should. Be sacrificed for a non fatal non cancerous condition. 

      Whatever you decide good luck 

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