Help please! Anyone had Myomectomy?

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Hi ladies. I'm in great physical pain and mentally terrified and so depressed I'm about to crawl into the ocean like VW. I have a very large fibroid. I'm scared to know how big it is now but last November it was 11cm. Ever since I hit perimenopause it's been growing like crazy thanks to prob my screwed up low progesterone. And even tho I'm in peri, doctors say I could be still 5 years from menopause while this evil frakenbroid grows. I'm in severe pain and look pregnant even when I'm not having a period. I feel like I'm in an alien body, plus the peri weight gain. I tried everything to avoid surgery over the past few years ... vegan diet, acupunture/herbs, ulipristal and it keeps growing. I've been trying to avoid a myomectomy because of the down time and obv risks of scar tissue etc. I'm 47 so prob can't have kids but DO want to keep all my lady organs. Recently I was excited about a new procedure I saw on TV called Acessa. But then first of all, my insurance doesn't cover it and I don't have a way to borrow the cash (I'm alone without a supportive family or spouse), and then when I was researching it I came across a few women on message boards (not this one) that said they got the procedure and were told by their surgeon that it worked, only to find out a year later that it didn't work, and in once case the woman's fibroid somehow got worse. I realize that's only 2 folks but it obviously makes one nervous that they had the same complaint and were not told the truth and led to believe they were better while things got worse. So now I'm back to debating myomectomy. My fibroid is so big not sure if I can do laproscopic or not anymore, and I'm worried about taking time of work, surgery risks etc. I can work from home but not sure how much pain I'd be in. I'm not sure I could find anyone to stay with me and if I could not for long. Can anyone share their myomectomy stories? Thanks!

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  • Posted

    so sorry to read this- please don't be scared go over to a facebook group called- UTERINE FIBROID REMOVAL GROUP.

    there is a wealth of information on there from many ladies- it's global and you can use the search tab for any info. wherever you are located there are others and they can share their exoerience and surgeons. it's great!

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  • Posted

    Hi Sakura,

    Sorry you are going through the pain that you are at this point. I had 4 fibroids that were giving me problems from 2 cm - 13 cm. The largest one was causing some struggle when I exercised. It appeared as if there was an alien in my stomach. A period was debilitating and caused me to stay inside my house (when I could). I did NOT have a Myomectomy since I didn't want scars, I did NOT have a Hysterectomy because I did not want major surgery, however, I DID have a Uterine Fibroid Embolization (UFE) since it was the least invasive option for me. This was an outpatient procedure, and I was home later in the evening. The anesthesia did complicate things for me, but I managed to stand up and do what the nurses wanted in order for me to go home. I will admit the radiologist who did the procedure had visited me in recovery, and thought I should have stayed overnight, but I chose not to (was vomiting from anesthesia and another medication they gave me). I had family who took care of me at home for a good week. I will admit the cramping after the procedure was a little rough, but I had taken Ibuprofen (400 mg) for about a week or less which helped a lot.

    I hope that this was somewhat helpful. I know you chose to have a Myomectomy, but I saw this on my feed and thought I would respond. You are not alone. Just remember to breathe, and definitely think this all through. I know that there are plenty of women on this site who have had various procedures and/or surgeries that can help fill you in.

    Best of Luck!

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    • Posted

      Thanks Cindy. I thought about UFE if my fibroid is even the right size. But I was worried about a few things. I heard sometimes UFE doesn't work and you're left with a big mass. Also UFE can push you closer to menopause and I'm already close enough. 😭 Lastly, I know they leave those plastic beads in your arteries FOREVER and I think what if they find out in the future the beads move and cause an aneurism or if they just cause inflammation and lead to disease or something. How my mind thinks sorry. Esp lately. I really wanted to try Acessa but now I've heard some sketchy things about the doctor and I also don't have the cash he wants me to pay up front and he doesn't allow you to just pay in installments like a normal hospital or doctor's office.

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  • Posted

    Hi I read your story and I totally understand exactly what you are going through. I AM HERE FOR YOU.

    PAIN MEDICATION THAT WORKS IT HELPS THE UTERINE PAIN AND FIBROID PAIN! IT IS TORADOL!

    I had to insist my doctor prescribe it for me after my radiologist told me that TORADOL is the only thing that really helps the pain. it takes my pain about 75% away!

    i too am 47 years old and I just had a UTERINE ARTERY EMBOLIZATION on 3/27/19. I DIDNT HAVE ANYBODY to take care of me either. I've stopped bleeding after bleeding and hemmhoraging for 6 months. I STOPPED BLEEDING 6 days ago. I TOO have a 9 month looking uterus its painful my fibroid is huge too.

    MY PROCEDURE WAS SCHEDULED to last 60 to 90 min, it was 4 HOURS AND 20 min long. they said my uterus and fibroid were super enlarged and they had to do what they felt best to stop the blood flow to the fibroid. I ALSO have endomyosis. I TOO could not have a laproscopic procedure either due to fibroid and uterus way too big.

    its only been 3 weeks and im still sore and apens alot of time in bed. BECAUSE OF THE SEVERITY of my case it will take me another 3 weeks until i should start feeling better and somewhat NORMAL. if you lived in oregon i would totally take care of you if you had a procedure.

    has your doctor done an MRI TO MAKE SURE YOU DO NOT HAVE OTHER ISSUES GOING ON IN YOUR UTERUS?

    I STARTED TAKING NUEROLINK SUPPLEMENT AND ITS TOTALLY HELPING MY DEPRESSION AND HOW MY MIND HAS AND IS HANDLING MY FIBROID NIGHTMARE. its made by designs for health and it comes in a white and blue bottle with 180 capsules. I've seen it on AMAZON.

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    • Posted

      Thanks Lydia. You are so kind. 😃 I'm sorry you are having a bad time too. Are you glad you did the UFE then? Did they tell you you'll go into menopause sooner? I hope it works and shrinks the fibroid. A year ago my fibroid was more like 10 cm and so surgery would have been easier but I wasted time trying natural healing and I honestly didn't think it would grow so fast all of a sudden since before it was slow growing. But that was before stupid peri. UFE also scares me because it could not work and then the plastic beads they leave in plus early menopause. But I know it's supposed to be less down time than surgery.

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  • Posted

    it's uterine fibroids- removal support group. use the search tab at the too of the group for any questions- i'm in NYC and have two minimally invasive top surgeon apts lined up for myomectomy myself. i did get an mri and ultrasound done and ask for the slides on cd to take everywhere with you. my doctor ordered MRi with and without contrast- this is importnat to have. let me know how you get on

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  • Posted

    to add, i was going the route of UfE but changed to wanting a myomectomy for many reasons. i want to keep intake my uterus, ovaries etc and i'm 51 next month. i love that my cycle is still very regular and did not want to mess with my hormonal levels- re. uFe cuts off the blood supply to the ovaries as well as the fibroids. anyhow let me know how else i can help- did you find the fb group?

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    • Posted

      Thanks I just signed up for both groups, waiting for permission. I also had the same reservations about UFE the earlier menopause and the beads in your arteries forever. But then I can't be out of work for 6 weeks and am alone. Though I can work from home if I'd be well enough. Also worried about scar tissue, possible hysterectomy and all damage surgery does to your body. Or smaller fibroids growing back. Tho I am old. I'm also scared what size my fibroid has grown too. That's why I was so excited about Acessa until it seemed sketchy and expensive. I will try that Facebook group when they accept me thanks!!

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    • Posted

      Hi Helen,

      Am glad myomectomy worked for you however may I share my experience a bit.. I don't think the overies are affected at all by UFE. The Radiologists only work on the arteries that feed the fibroids..and that menopause is a risk but not a factor... told by my Radiologist. My Radiologist has been doing this procedure for 10 yaers here in Canada, so is quite experienced in performing and training others in UFE.

      I am 50 yrs and I had UFE last year Nov. I had a big fibroid and a few smaller ones. I have had my periods regularly and they are amazingly light, no more pain too. I passed out my largest fibroid & that was a bit dramatic.

      5 months down the line and am very pleased with the results so far. What a relief from the heavy bleeding and pain and aneamia.

      All the best Helen.

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    • Posted

      So did the ufe affect your hormones? How big was your largest fibroid? Also were you worried about the plastic beads staying in? Thanks!

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    • Posted

      No it didn't. Not that I know of, because my overies were not touched.

      My largest fib was about 9cm. It was submucosal and had shrunk to about 6cm in about 2 months, then it fell off.

      As I mentioned there was drama before it was discharged after 2 months, and baad smell.

      I asked my Radiologist about the beads and he reassured me as he had done this procedure for over 10 yrs on other women with no issues down the line.

      I was soo done with the deteriorated quality of life 8sue to fibroid symptoms.

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    • Posted

      I hear you about quality of life. I assume you chose that over surgery as less down time? My fibroid is around 11ish cm so not sure if size is okay for UFE. I assume you also have a flatter stomach now. Thanks!

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  • Posted

    Hi! So I know the idea of major surgery makes a lot of people very nervous, but getting a myomectomy in 2017 improved my quality of life tremendously. I was 29 when I got the surgery and like you, the fibroid was causing me to look 5-6 months pregnant at times. It also was very painful and caused me to have extremely heavy periods. I found a really good doctor who took time to explain to me that an open myomectomy was the best option since the fibroid was so large (the size of a cantaloupe). He also advised that it might be difficult to get pregnant with the fibroid and I knew I wanted children. So I went through with it, stayed in the hospital for a couple days after and I recovered within five weeks and returned to work. (most people take six weeks but I got bored at home lol ) There will be a small incision and you'll feel weak and a little sore for the first week or so, but each day it gets easier. Make sure you have a friend or family member to come help with laundry and preparing meals for you when you first get home. The doctor will advise you to take it easy. Anyway, here I am two years fibroid free! I'm active, I work out/jog, I feel great, and my husband and I are now trying for a baby! So I highly recommend getting the surgery. You'll be fine!

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