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UFE Success Story- 10+ fibroids

Posted , 6 users are following.

LillyTL
LillyTL

I had 10+ fibroids with biggest three at 10cm, 7.5cm and 6.7cm + more than doctors could count from 2cm down to 1cm (for the ones they bothered measuring). 

While my recovery after UFE was difficult for the first 4 days and I was tired for almost 3 months, I consider myself a UFE success story.  My stomach is getting flatter every day.  I still have discharge which I view as a good sign of continued breakdown of the fibroids but I'm now wearing shirts and pants I stopped wearing prior to UFE due to the size of my belly.

I felt lost by the time I started to seek out help for my fibroids.  My stomach was so big that people on the subway started asking me if I wanted to sit down because they thought I was pregnant.  I'm a very small woman: 5'4 and size 4 clothing and it was really uncomfortable.  My gynecologist didn't present me with an option for UFE until I told him I would absolutely not let him give me a hysterectomy.  He told me I wasn't a candidate for myomectomy because I'd have no uterus left to repair after removal of that many fibroids.  I wasn't even eligible for a laproscopic hysterectomy given my small body size and how big my uterus was- there was simply no space for tools.

I am so happy with my UFE procedure.  For the first 24 hours post UFE, I thought I would never recommend someone do it given the amount of pain but now, I'd recommend every woman explore UFE as an option to see if it's right for them.  And from what I understand the pain is no worse than what you will experience for a myomectomy or hysterectomy from the recovery is faster.

Yes the pain was severe for the first 24 hours, and I experienced occasional pain for weeks afterwards- which is to be expected given my number and size of fibroids but I went back to work after 2.5 weeks, walked to get ice cream the 2nd day after surgery and even started cooking in the first 3 days and did some cooking for Thanksgiving dinner just 6 days post surgery (your results may vary).

I wanted to come and give my story since forums helped me so much before and after my Nov procedure.  I really did not want to lose my ovaries and uterus and UFE allowed me to keep both.  Good luck to all out there going through this.  I hope this has helped in some small way.

1 like, 12 replies

12 Replies

  • CoCo2016
    CoCo2016 LillyTL

    Posted

    Ditto to everything you wrote. I had my UFE procedure on 10/24/16 and my experience was similar to yours. My gynecologist mentioned UFE when I was hesitant to surgery. My primary care physician told me when possible you should always choose a micro invasive procedure over a major surgical procedure, every time. The forums helped me immensely as no one in my circle was familiar with UFE but the majority have had hysterectomies or myomectomies.
    • heather34376
      heather34376 CoCo2016

      Posted

      I'm glad your procedure was a success thats great news. Horrible fibroids. Can I just ask one question, well two if I may, did your primary care physician elaborate on why you should always choose a micro invasive procedure & what area are you in please?

    • CoCo2016
      CoCo2016 heather34376

      Posted

      Heather I'm in Florida, USA.

      UFE involves a tiny incision, the size of a pin head, either in the groin or in the wrist. A hysterectomy involves a much larger incision which requires stitches and weeks, if not months, for recovery. After any surgical procedure there's a risk of infection and complications, same with UFE, but maybe less.

  • heather34376
    heather34376 LillyTL

    Posted

    You have had quite literally quite a belly full to deal with. I'm glad you have had great success. Pleased for you. Where did you have UFE done? Did your IR give you the stats regarding how many they'd done, what their success rate was & what they expected your outcome would be? Where were your fibroids & what type were they? In the wall, in the cavity? Intermural?

    • LillyTL
      LillyTL heather34376

      Posted

      Hello Heather, my fibroids:

      7.8 x 9.0 x 8.0 cm subserosal exophytic posterior lower uterine

      segment occupying the cul-de-sac and compressing the rectosigmoid.

      6.7 x 6.6 x 7.0 cm intramural right anterior lower uterine segment.

      5.2 x 5.0 x 4.5 cm subserosal exophytic left posterior corpus.

      5.9 x 5.0 x 6.5 cm intramural exophytic right lateral corpus.

      6.7 x 6.0 x 6.0 cm intramural right superior corpus.

      9.6 x 10.7 x 10.0 cm intramural fundal.

      3.8 x 5.9 x 4.5 cm intramural midline anterior superior corpus.

      3.4 x 4.5 x 3.9 cm intramural midline anterior mid corpus.

      3.6 x 3.6 x 3.1 cm intramural fundal.

      3.3 x 3.0 x 3.1 cm intramural posterior lower uterine segment.

      3.1 x 3.1 x 3.1 cm intramural posterior lower uterine segment.

      Two tiny submucosal myomas are identified in the superior aspect of

      the corpus, the larger 1 cm.

      Here are my specific UFE results. 

      I had my procedure done at a university hospital in the US and my doctor is a professor who teaches UFE so I wasn't that worried about how many procedures he'd done before- knowing that would be many.

      From the moment I spoke with him, he thought I would have very good success though he warned me that I would likely have a rough recovery given the number and size of my fibroids.

  • pam14575
    pam14575 LillyTL

    Posted

    I had an UFE this past September and it put me into menopose at 44. Well that's what my obgyn said after doing a hormone test after I complained of severe vaginal dryness around November . I also didn't have a menustral cycle November, dec, or January. They wanted to start me on hormone treatment but I did Maca instead and had a period(I think) This month my cycle came like it normally does but I started HRT because of the dryness and my hair falling out . I was wondering did you notice any of your hair falling out months after your UFE?

    • LillyTL
      LillyTL pam14575

      Posted

      No hair fall that is significant.  My hair is a bit dry but I'm chalking that up to winter.  I've gotten my periods as normal (I'm 45) every month except for one month where there was a weird spell of bleeding that I think was from a ruptured fibroid vs a period.  It was quite heavy, liquidy (red but not viscuos like blood) and lasted for about 6 days.  The one thing that I haven't been as excited about is my period is still a bit heavier than I'd like though I no longer have cramping, huge bloodclots or a swollen abdomen.  I'm hoping to see the bleeding get lighter.

    • CoCo2016
      CoCo2016 pam14575

      Posted

      I don't know what my hormone levels are but I haven't had a period since my UFE procedure. Prior to the UFE my period had become irregular so it was only a matter of time. I'm 50 and was probably premenopausal. My fibroids didn't become apparent until 2 years ago and the only sign was the extra weight I was gaining in my stomach area.

    • pam14575
      pam14575 CoCo2016

      Posted

      Hmm well if you start getting hot flashes etc go to the doctor right away. I did go. It they kept saying I was still recovering and I had to go to another doctor to get my hormones checked . 50 I was told was too late to have a UFE because it would for sure put you into menopause . I'm glad you have had great success with it because I'm miserable . I think maybe the doc must have messed with one of my ovaries and that's the reason why my numbers are so low and it put me into menopause .

    • CoCo2016
      CoCo2016 pam14575

      Posted

      Pam as a matter of fact Ihave started experiencing hot flashes but I just figured it's all part of the process. I'm not sure of whatever might be out there to lessen the hot flashes but mine haven't been unbearable.

    • pam14575
      pam14575 CoCo2016

      Posted

      I hope all goes well for you but I just wanted to share my experience so no one has to suffer like I did and fix not listening . I know my body and I knew something was very wrong when I immediately had vaginal dryness .so just pay attention to your bidies ladies and also what's crazy most of my hair is falling out on my right side where most of my fibroids were 🤔

    • CoCo2016
      CoCo2016 pam14575

      Posted

      Thank you Pam. I will definitely do so. I'm experiencing dryness as well but because these are unchartered waters for me I figured this all part of the process. I don't want to do anything with hormones because I'm concerned about the effects and mood swings I've heard about. I am a mellow and easy going type person and I just can't imagine having my demeanor change because of meds.

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