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Large uterine fibroid, severe nerve pain

Posted , 6 users are following.

Micramary
Micramary

I've had MRI and have a 10cm fibroid.  I'm pre menopausal, and have had some heavy bleeding recently. I've recently been having severe sciatic type nerve pain in my buttock down to leg. I ended up in hospital as pain so bad, I was being sick.  I've seen the gynaecologist, who has fitted me with a coil and put me on esmya. I'm due to see her again in 3 months.. In the meantime I'm taking a variety of painkillers in pregabalin, To control pain - it reduces it to background pain, but I struggle at night.  My problem is I think the enlarged uterus is causing nerve pain, my gynaecologist doesn't. What should I do? My husband wants me to have a second opinion.  Has anyone experienced this sort of pain with fibroids?

0 likes, 21 replies

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  • ann_marie_61947
    ann_marie_61947 Micramary

    Posted

    Hi there micramary,

    Now I had a fibroid sane size, I suffered back pain that was debilitating on and off for 4 years my back used to go into spasm and I looked crooked the pain was really severe and I couldn't even support my own body weight. At the time I didn't know about my fibroid and it wasn't u till I had an MRI scan that they discovered it I had a bulky uterus.

    I have recently had an hysterectomy everything removed I also had an ovarian cyst and adenemoysis ( sorry about the spelling)

    When I came round from the anesthetic I immediately found relief on my spine and ha e done ever since.

    I'm no expert Hun and this is only my story only you know how you feel and follow your gutt instinct

    Xx

  • christine65130
    christine65130 Micramary

    Posted

    Hi, sorry to hear about your pain. Yes I have similar sciatica pain, usually down my right leg but sometimes both. It's never severe like yours though, I can usually walk it off. It seems worse first thing in the morning and after sitting for a long time. I have several fibroids, the largest is bigger than yours. I am currently on my 3rd course of Esmya, which does shrink them, and the sciatica improves. So I would definitely say fibroids are the cause.
  • patricia27802
    patricia27802 Micramary

    Posted

    I am really interested in what you described. I have 10cm Fibroid and I have just had a Uterine Fibroid Embolisation and I have a nerve pain in my right buttock which I blamed on my procedure. Maybe it's he Fibroid.

    I don't know about the coil and Esyma as I have not had them. Whether you need a second opinion depends on what treatment you want long term for the Fibroid. Having been on this journey my understanding is that there are 4 choices of treatment for large Fibroid.

    1 medication

    2 Uterine Fibroid Embolisation

    3 Myomectomy

    4 Hysterectomy

    My advice is do loads of research to find out which is best for you be aware though that most Gynocologists will push you towards options 1 and 4 if they are not offering all 4 then maybe get a 2nd opinion. Whatever you decide best of luck

  • f91864
    f91864 Micramary

    Posted

    Its best to get to get a second or third opinon from a more experienced gynaecologist.  Do your research and go privatel if necessary. Its most likely that your pain is caused by the fibroid. Even though you state you are pre menopause you need to get a proper solution as you could still have problems at menopause as 10cm is a large fibroid and they don't dissappear during menopause.
  • Micramary
    Micramary

    Posted

    Thanks for all your advice. The pregabalin is allowing me to sleep but I pay cost on waking and quickly gobble a multitude of painkillers. I think I will have to seek a second opinion privately - I'm sure the private dr can access my MRI results. I honestly don't think I can cope with this continual pain. 
    • christine65130
      christine65130 Micramary

      Posted

      Wish you lots of luck and a sympathetic knowledgeable gynae. I have had 2 private consultants with no mention of UFE their only interest seems to be in hysterectomy. And one is a 40 year old female!
  • Micramary
    Micramary

    Posted

    Ive got to the point, painwise, that I'd go for hysterectomy if I thought pain would go - I'm 53 and no wish for more children! The bad news would be if I had that done and pain still there. I suppose my uterus has been described as lumpy, has a thick lining, fibroids and a benign cyst, so not in great shape! Painkillers kicking in now so just a background niggle which I can deal with. 
    • christine65130
      christine65130 Micramary

      Posted

      I'm in my 50’s too and feel the same but am wary of the surgical complications, blood loss etc as my uterus is so big. And lumpy lol.
  • Micramary
    Micramary

    Posted

    If it wasn't for the constant pain, I wouldn't be considering surgery. I can live with blood loss and elements of discomfort. I could even deal with waiting 3 months if the painkillers were being effective. Even now I'm nervous about a second opinion telling me hysterectomy is the way to go, but I'm at a loss. 
  • christine65130
    christine65130 Micramary

    Posted

    The problem is, there is no 'end' to the condition. The fibroids just keep growing, so it seems without surgical intervention there's no answer. I looked at changing my diet after reading internet articles by people who have managed to shrink their fibroids but it seemed excessively restrictive and supposedly requires a multitude of expensive supplements. If it was as simple as 'cut out dairy foods' or 'cut out carbs' I'd give it a go. 
  • peruvian_lily
    peruvian_lily Micramary

    Posted

    I had a 6 month sized uterus including 1 10 cm fibroid. I had sciatica, which was intermittent, with occasional could barely walk bouts. Mainly when sitting for more than 15 min. Had 2 courses of Esmya which stopped bleeding and therefore was a relief from constant tiredness with a reduction to about 18 weeks size. The fibroids started growing again. Last April I had a UAE. Within 2 weeks I had relief from constant constipation, urinary frequency and sciatica and rib pain. Since then have had some heavy periods but none as bad as pre UAE. Now settling to about 7 days with 2 heavy days. I think from what I have read they will improve further. Does your hospital where you see gynae offer UAE. It is not a quick fix but it works.
    • peruvian_lily
      peruvian_lily

      Posted

      Also size of fibroid has reduced. Before UAE could fell just at navel even after Esmya. Now the whole thing has moved down about 10 cm.
    • christine65130
      christine65130 peruvian_lily

      Posted

      Hi, is UAE different from UFE or are they the same thing? I had microwave ablation done some years ago which worked for a while but it pretty much messed up my uterus, gynaes have found it impossible to perform a uteroscopy, I had to be under sedation to get a biopsy sample. Not sure if this would complicate the procedure?
    • peruvian_lily
      peruvian_lily christine65130

      Posted

      Uterine artery embolisation is the same as uterine fibroid embolisation. The particles go into the uterine arteries to block the blood supply to the fibroids.
    • patricia27802
      patricia27802 christine65130

      Posted

      Hi endometrial Abalation (microwave ablation) is a different procedure to UFE. the reason. I know this is I have had both.

      Uterine fibroid and Uterine Artery Embolisation are the same thing.

      EA is done inside the vagina and UFE is done through your artery s. Also a Gynocologist does EA but a Radiologist does UAE

      there is a lot of information. Online on both. The best thing is to do loads of research so that when you see the Gynocolgy you are well informed.

    • christine65130
      christine65130 patricia27802

      Posted

      Thanks Patricia yes I know they are different, just wondered if the ablation would have compromised the tissue. Did UAE work for you? (Sorry if you have posted this elsewhere, so many posts it gets confusing). 

      I am struggling to find a private hospital on the Costa Blanca, Spain that offers radiology treatment, or any mention of UAE. Will keep looking. The gynaes I saw were ONLY interested in hysterectomy, the last one said she only needed to see me next when I was ready to book the surgery.

    • patricia27802
      patricia27802 christine65130

      Posted

      Hi Christine Endomerial Ablation didn't work for me. In fact it made me worse. My tummy doubled in size and my periods went from heavy to not leaving the house due to flooding. So the anemia also got worse. Also I was leaking a watery discharge up until I had UAE 4 weeks ago. I didn't understand the EA procedure. I thought that they were going to put the balloon over my Fibroid then it would melt. My fault I should have done online research instead of a Gynocologist. I am disgusted that the Gynocologist won't see you again until you book a Hysterectomy but I'm not surprised

      I don't know about healthcare in Spain maybe some one else on here will.

      If I could go back in time I would have told the Gynocolgist where he could stick his EA. it was never gonna work on a Fibroid the size of mine in my opinion. But maybe other people have a different experience. The cynical side of me thinks that In my case he knew I would get worse and therefore have a Hysterectomy but he under estimated how stubborn I am.

      Now I am really glad I had UFE I would recommend it even if I got Fibroids back as it's worth going down a less invasive route 1st.

      I bet it wouldn't be like this if men had a womb

    • christine65130
      christine65130 patricia27802

      Posted

      Lol you're so right! I was especially dismayed as the latest gynae is a woman...... I think I will go back and see my gp here, who is Dutch, and ask him how I might go about getting referred for UAE. I guess for the consultants, surgery is where they get their income. To be fair, the latest one did prescribe Esmya, which I was grateful for, but only as a precursor to surgery.
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