Please help with your fibroid experience

Discussion in 'Fertility & Trying to Conceive' started by redgems, Apr 27, 2011.

  1. redgems

    redgems New IL'ite

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    Hello Ladies - I've told this story to so many different people and read so much but I wanted to get some direct information about experience/results from others who might be going through the same situation.

    I'm not sure if there is a 'sticky' for fibroids or how many people are suffering from it on this board but it would be nice if this could become a sticky - assuming sticky criterion are met!

    I was hoping people could share their experiences about conceiving with fibroids, removal methods, diet, what you think you should have done better, etc.

    Anyways, my story - was diagnosed with a fibroid last May, told that it was small in size where I could still conceive. We tried for about 6 months or so, went back to the doctor in early February 2011 and she said no way to conceive with the large size of the fibroid. Suggested surgery for removal.

    I am taking some homeo meds and recently found out about HIFU/MRgFUSS which can help to get rid of the fibroid in a nonsurgical way. I have an appointment for the HIFU procedure in late May. Have to do some blood work, MRI, x-rays, etc. before the procedure. It's less risky than surgery (laproscopy or otherwise) and the recovery time is better. I think you also don't have to wait as long to try and conceive.

    So, my questions:

    1. I've been told I might get put on Lupron/leuprolide - has anyone been on it? For fibroids?
    2. I have a single fibroid - 80 by 82mm compressing the whole anterior wall of my uterus. Is anyone in a similar boat?
    3. I know the HIFU is new - but does anyone have experience with it?

    Please share your story with me and give me some hope!

    Best of luck to all of you!
     
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  2. MythiliMurali

    MythiliMurali Bronze IL'ite

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    Hi
    I am closer to you but advanced than you. Don't worry. Your case is better when compared to mine which requires abdominal cut surgery. I have to take Lupron shots for 2-3 months & then have to schedule for surgery. Waiting for the shots. Mean while I am looking for some natural ways.
    In the initial days I tried searching for shrinking fibroids naturally but tired of seeing people saying this might be helpful, that might be helpful but no one came up with success stories & actual procedure. Finally I decided to have the surgery done. Since my case is not watchful wait case. I have large ones & I have to plan for kids. If I have kids I would wait & try for natural remedies. (Of course not passing natural remedies completly).


    The things I found in my reasearch(even though doctors say dietary changes doesn't effect):
    Findout the cause for fibroids whether estrogen dominance or genetic conditions
    If it is because of excess estrogen,
    Clean the liver so that it processes excess estrogen.(Means have to avoid red meat,fried foods... that puts burden on your liver, eat more fruits)
    Fat cells produce estrogen. So lose weight.
    Other natural ways:
    Alovera will stimulate the uterus & helps to shrink fibroids
    Raw papaya skin will help in dissolving fibroids
    Tincture of Iodine will shrink fibroids
    Chickweed seeds/leaves/tincture are good for fibroid shrinking
    Don't know whether they will work or not but I am applying Tincture of Iodine directly on my stomach. (Ask your doctor)

    Keep in touch.
     
  3. redgems

    redgems New IL'ite

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    hi mm -

    i had an mri done and found out i do have multiple fibriods. one large one (measures 80x107 per the mri report) and some small ones but those are not a concern. the big guy is really big from what i understand. i did try the homeo meds but they were no use - although maybe if you're willing to try them for an extended period (1 year or so), then perhaps that might make a difference.

    i also read a lot about what to eat and not to eat. the strange thing is that i've never consumed a lot of read meat and have always been a big fan of fruits and veggies. and sugary stuff. i think that's the killer for me - sugar adding weight, creating estrogen issues (although the hormones are normal and i'm within my bmi index).

    anyways, had the hifu procedure done last week. there are certainly patient parameters for the procedure but the worst things i had to go through were a catheter, enema, some needles and lying on my tummy for a few hours. all in all, not bad and the ultrasound confirms a decent portion of the fibroid has been taken care of. i'm in a 1 to 2 month wait to do another mri and have an appt with the gyn mid june to have another ultrasound.

    we also dont have children but i hope that will change soon, with God's help!

    the procedure was 'great' - no cutting, no extended time to wait to ttc. i'm not sure where you are but the technology - although not widely available - is being used in the US, Canada, India, UK, Israel and Mid East.
     
  4. Vasumathy

    Vasumathy Moderator Staff Member IL Hall of Fame

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    Hi Redgems,
    Hope you are doing better now. Take care. Hope the rest of the fibroids too vanishes soon!
    All the best.
    Baby dust to you!
     
  5. MythiliMurali

    MythiliMurali Bronze IL'ite

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    Hi Redgems,
    How are you feeling now? Take rest. You took a quick decision. Finally I got my first Lupron shot & have to wait for another 2 months for surgery. Even though our doctor is a Laproscopic specialist, he suggests abdominal cut surgery. Have to clear these as soon as possible.
     
  6. MythiliMurali

    MythiliMurali Bronze IL'ite

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    I heard candy sugar & white bread is not at all good. Jaggery or big crystal sugars are good. (I ate lots of sugars & noodles)I heard some people saying even though they exercise alot also have these. So I stopped restricting myself with limited food. I am sure what ever I follow, I need a surgery. So preparing for that.
    Take care
     
  7. redgems

    redgems New IL'ite

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    thanks ladies! hope you're all doing well. i had my procedure done on 5/17 and i feel great so far. it was an outpatient procedure and when i got home, threw up and fell asleep. i didn't do any bending or really any work for a few days but now am back to my regular pre fibroid self.

    i have an appt later this month and hopefully will get an ultrasound done to figure out how much the fibroid has shrunk. but from self examining, i can tell there's already a bit of a difference as my tummy area is not tender anymore.

    once i reach the one end mark, i'll feel much better b/c i can see what my cycle is doing and will have confirmation from the doctor.

    mythili - i also asked the doctor if i should be on lupron but so far they've not suggested it. are you docs suggesting open abdominal vs laproscopy? whichever it is, i hope it's successful and i'll keep my fingers crossed!
     
  8. MythiliMurali

    MythiliMurali Bronze IL'ite

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    Hello redgems,
    Hope you are doing well.
    I would like to ask you few questions about your pre-surgery condition:
    1) What was your enlarged uterus size before surgery? Mine 17 cm
    2) Do you have distorted uterus? Yes for me
    3) How confidant is your doctor about your future pregnancy chance? (sorry if I make you panic )
    I read out of 51 woman, they have 54 reported pregnancies. But would like to know what your doctor had told you. In my case I have very large fibroid s which cannot be done with HIFU.
     
  9. redgems

    redgems New IL'ite

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    Hi Mythili -

    Sorry for the delayed reply. Responses are below.

    (1) The radiologist I went to had said my entire uterus was begin taken up by the fibroid. So I think even after the fibroid, it was maybe 7-8cm. Definitely less than 10 at the time of procedure if things had gotten bigger between radiologist appt and the procedure.

    (2) Well my uterus was definitely being pressed up against whatever other things because of the size of the fibroid and it's location. Definite distortion - to the point where doctor had mentioned pregnancy not possible.

    (3) No worries. Relevant question. I had the procedure done May 17 and went to the OB/GYN on June 19th. He said there's been a 25% reduction in size and it should continue to decrease in the next 5 months (six months is the time frame given to see the entire reduction, whatever it ends up being). He's advised us to try naturally for until September and if nothing happens, will do testing or recommend fertility enhancing meds. At my June appointment, he did a regular ultrasound and could see that the fibroid is no longer pressing as much on the uterus and it's relaxed versus distorted pre-procedure. Based on doctor, chances are good. Periods pre and post procedure continue to be normal so he sees no reason that there is another issue. Speaking of the period, it was about 10 days late after the procedure, did come, had some excess yuckiness come out but nothing that was alarming. All good so far, thank God!

    Regarding conception chances in general, I did a lot of reading before the procedure. I read a bunch of papers where the patient (who had never been pregnant before, was in her late 20s or early 30s) got pregnant on their own 3 months after the procedure. Fibroids are pretty common, I suspect they are caused by stress, especially get big for those of us who are not well equipped to handle craziness. I think mine was honestly due to my recent marriage and all the changes and tension. I try to not think about things and just let things be. We'll see where we get to in a few months time. I think fibroids are not a huge issue if taken care of properly - I rested and didnt do much work after my procedure. Especially if you are going laproscopy, I think take things easy, get up very slowly and pray!
     
  10. MythiliMurali

    MythiliMurali Bronze IL'ite

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    Thanks for the reply.
    Congratulations!! You are on your way!:thumbsup
    You are not late, I am too late to ask you this question. I have few days left for my surgery & my hubby is not at all interested in any other procedure because of my fibroid's size(though he was convinced after reading your post but he is not implementing it). Hoping God will listen to me & do best for me.
     

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