UPDATE: My condition two months post-Uterine Fibroid Embolization

This update is over a week late. Sorry for that but I’ve been busy trying to keep up with comments and making posts on the Forum. I’m definitely NOT complaining. It’s wonderful that everyone is posting questions, answers, thoughts, and funny moments.

So, how was my second period? Another question mark. I was a little nervous because I had to attend a funeral that Saturday. Last period, I stayed in the house and hovered near the bathroom. This time, I needed to be away from home for a few hours. Tense in the beginning. Sometimes, I revert back to the mindset of having to KNOW where the bathroom is located and a quick escape route. Once I realized that I wouldn’t just spontaneously hemorrhage all over the pew, I knew it would be okay.

Here is the timeline:

Friday, September 8, 2006: Cramping and spotting starting that morning. Bleeding became heavier as the day progressed but still not that much more than spotting. Ended up taking a total of four 200mg over-the-counter Motrin during the whole day.

Saturday, September 9, 2006: Cramps were less painful but the bleeding slightly heavier. Decided to wear the “tampon + pad” combo just to be on the safe side. No problems. Noticed one small clot but the bleeding I would still characterize as light. (I think my previous episodes before treatment of passing liver-sized clots and bleeding as though I had been cut in half with a chainsaw have now slightly screwed my perspective.) This was a two 200mg Motrin day.

Sunday, September 10, 2006: Cramps and bleeding early in the day. Both tapered off by that night. Only needed two 200mg Motrin on this day as well.

Today, I’m feeling well. Still have that weird swelling in the calf, ankle, and foot on my right side. Off and on. It goes down overnight and is fine the next day. It’s worse when I work out. Alas, the perfect excuse NOT to exercise. Sigh. So yeah, I’m good. I feel positive and I owe that to my support system including this site. Thanks for sharing what you share. I laugh, and cry, and feel quite human. This from someone who considers herself, at least, half Vulcan.

Thanks Aly Fibroids for giving me a nudge to get this update posted. Now back to the other 20 things on my list that I’m trying to post. 🙂

——————–

Related Posts:
How are you feeling after your Uterine Fibroid Embolization?
I’m really starting to think my wiring is kind of screwed
Two weeks after my Uterine Fibroid Embolization
Gosh…my period turned out to be a question mark!
My condition one month post-Uterine Fibroid Embolization
UPDATE: My condition three months post-Uterine Fibroid Embolization
UPDATE: My condition four months post-Uterine Fibroid Embolization
UPDATE: My condition five months post-Uterine Fibroid Embolization

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32 Responses to “UPDATE: My condition two months post-Uterine Fibroid Embolization”

  1. Julia Says:

    Hi EG,

    I’m glad you’re feeling better. What you’ve done here is put up an amazing support system, especially for those of us not in the bell curve ‘norm’. They’re running ads here for ExAblate and a big part of the ad is that it’s non-invasive (true) and that there’s a short recover (hmmmm)…

    I had my UFE 6 weeks ago today. I’m already home from work because of pain. I was fine this morning, then about noon during a meeting there was just this… weird, sharp pain and I cried out! During a meeting! I was afraid to take a deep breathe. Then there was cramping. With cramping comes nausea.

    It’s hard to get a handle on how much i’ve ‘recovered’ because I’ll feel great and do stuff and then cramping starts. And it doesn’t stop until I lay down in a position that’s not conducive to working.

    I know one of my five fibroids was, no IS, huuggghhhhh, but the UFE was 6 weeks ago. I just called my IR, even though I just saw my ob/gyn Tuesday. I know they can’t predict how long it’ll take to recover, but some sort of ball park figure would be good. A couple more weeks? I had a week, I think it was the forth, that I was feeling better, I stayed the whole day, every day at work, and then BAM, last week and this week… not so much.

    Someone on this forum said “the pain seems to fluctuate from being ok to sudden onsets of it.” (I’m not sure where; I’m all over this site EG!) That’s a perfect description I think. Wednesday morning I felt great. I got to work early and stayed late (I have so much to do). Yesterday I had to go home early because I just couldn’t sit anytmore. Today I’d left work by 12:30.

    My ob/gyn described the UFE as giving your uterus a “heart attack”. You’ve cut off the blood supply (the IR forms an artificial clot) and the muscle is dying. When he put it in those terms it sort of makes sense that the larger/more numerous the fibroids, the longer the recovery. Like a massive heart attack, you don’t immediately recover from a massive ‘uterus attack’.

    I still don’t regret having the UFE. Mind you this is extremely difficult to do when I’m still cramping six weeks later. Whether this solves the problem or shrinks it enough for laparoscopic surgery and far less bleeding in any surgery, it was worth it for me.

  2. fibroid free Says:

    Hi EclecticGeek,
    Wondered how you were doing…gald the second period round was not a knock out punch…I am anticipating my “second period” post surgery soon….

    as usual , you had me cracking up…I am also Episcopalian and when you said “…spontaneously hemorrhage all over the pew..” I just died….I stopped going to church during “period Sundays” – that being one of the reasons…didnt even trust earing a black shirt and also the hard pews and the bathroom…ok is it the “right time” to get up…then when you do…there are always the “eye’s” that see you leaving….then the sprint out the door, across the grassy knowl (wait, not the grassy knowl) to ring the doorbell to the parish house….and wait wait wait wait until someone creeps to the door to open it…trying NOT to knock down anyone (especially a sister/nun) on your way to the bathroom……ahhh the memories…..went to church this morning and could sit through service for the first time in a loooooonnnnggg time (a little uncomfortable and ‘crampy” today hummmm..have to make some notes about week 8 on the AM forum…)

    also…you are a great writer…read some of your other blogs…

    Julia – so sorry your recovery is a slow one. I will put in a T-shirt order for you along with mine …” LEFT of the bell curve “. Hopefully the broids will just die already… I hope you have more better days than “not so good days”…..

  3. Aly Fibroids Says:

    Julia (and all other UFE Supergirls): I’m going through frustration with my so-called recovery from UFE, too. I’m heading into my 6th week post-UFE and finding that I have to take it a day at a time. For instance:

    1. Temperature/Fever: For the first four weeks, I was consistently running low-grade temps (between 99 and 100). My last low-grade temperature was this past Thursday (Yeah, I know it’s only Monday, but hey, three days with no temp feels pretty good to me).

    2. Nausea: First four weeks — fairly consistently, now intermittently (and at least not so badly that I actually feel like my breakfast will be coming up).

    3. Cramps/Abdomen Pain: First 3 weeks, cramp and abdomen pain were fairly severe (my uterus was so sensitive/inflammed that I couldn’t even stretch out or lie on my stomach without cringing). Now, that’s gone, and my cramps feel more like mild period cramps (like I’m going to start my period any minute — I keep checking).

    4. Tired/Lethargic: Again for the first four weeks, I was really tired all the time, and had I been able to, I would’ve slept the whole month of September (alas, working girl that I am, I had to settle with going to bed at 6:30 pm every night as soon as I got home from work). I’m still tired, but it’s not as severe as it was.

    5. Period: My first post-UFE period was September 13, and heavier and heavier longer than I had experienced pre-UFE. I’m hoping that my second post-UFE period will start any minute/day now and I would welcome another heavy clean out.

    6. MY PERSONAL FAVORITE: BLOAT! or, what I am now affectionately referring to as my FREAKISHLY LARGE UTERUS. Holy Cow, Batman! My stomach (from right below my breasts to right above my pubes) measured 42 freakin’ inches post-UFE, and remained so for at least the first 10 days after. It went down to 40 inches, then 38, then back to 40, then 37 since then to now. All because I’ve pissed off my fibroids and inflammed my uterus.

    7. Weird/Miscellaneous Crap: My IR had me come back to the hospital last week for ultrasound on both of my legs after I started experiencing swelling in both calves and both feet (so bad that I couldn’t wear shoes last week). He wanted to rule out DVT, which the ultrasound did. What it turns out is that my FREAKISHLY LARGE UTERUS is compressing the iliatic vessels and wreaking havoc on my leg blood flow (happens to pregnant women and may cause vericose veins). Again, my body’s unlucky response to pissing off the fibroids.

    I’ve been thinking a lot about this and what a long year it’s been since finding out I had fibroids last October. I’ve come to the conclusion that, man, I’m tired of this. But, I’ve also decided that I’m giving the ‘roids and my FREAKISHLY LARGE UTERUS until February 2007, when I will have my first measurement. Regardless of what that measurement reveals, it can only have been a beneficial choice because the fibroids can’t be getting larger and if I do need to have a hysterectomy, it may not have to be a full abdominal hysterectomy, but perhaps laproscopic. And, who knows? Maybe the fibroids will get the message and go away like they’re supposed to.

    So, to those of us who chose UFE, and can’t figure out why we aren’t experiencing the 7 to 10 recovery, I say KEEP POSTING! It can only help those who will follow in our footsteps.

  4. livingjourney Says:

    Wow what a blog… I stumble across this from the WordPress forum. I am very interested in all that is said here.
    There is an obvious need out there for women to become more vocal and educated with their own bodies isn’t there.

    Thanks for a great site.

    V

  5. EclecticGeek Says:

    Julia:
    Thanks. Still have some ideas to improve things around here but it’s encouraging to hear that the site is helping. I’m really interested to know more about ExAblate. I would love for women going through this to come here and post. We would learn more about the “short recovery”.

    [Edited to add: I now have two ExAblate posts –
    New treatment uses sound waves to shrink uterine fibroid tumors
    Does anyone have an experience with ExAblate (MRgFUS)?]

    Once again, I really wish there was some database of information where (at the very least) doctors could search and compare their patients to the “stats” in the database. For example, a women with X number of fibroids of X size who had a UFE/AM/whatever took X number of days/weeks to recover. With a database, you would be able to give percentages. So, instead of just hearing “7 – 10 days” over and over, you could then be told with fibroids of your size, there’s an X% chance of 7-10 days but also X% chance of 30 days. Something like that. Wouldn’t that be cool?

    I know it is often hard but I am glad that you are still able to see the positive.

    fibroid free:
    You are so funny. Yeah. That fear of not being able to get to a bathroom in time had kept me away. Feels great to be able to sit somewhere and not have to worry. It really is like a weight being lifted.

    Thanks for visiting and reading my other blog. That’s where I park some of the other stuff in my brain. I appreciate your compliment.

    Aly Fibroids:
    What is the deal with this DVT thing? I didn’t have a clue until someone posted about it and then I started the DVT forum question. Glad that was ruled out but you still have vessel problems. Okay, FREAKISHLY LARGE UTERUS. Live it up now. You are going down.

    It’s all about risk vs. benefit. It’s good you can see the benefit.

    V:
    Thanks for the visit and the kind words! I totally agree with you. Every woman has an experience to share, something to teach, and something to learn. I hope this site will help with that.

  6. Aly Fibroids Says:

    Hey Eclectic: I have a question for you — when is your first post-UFE measurement appointment? I’ve been reading that some IR’s/GYN’s schedule it for 3 months post-UFE. Mine isn’t until 6 months post-UFE. Have you been back to the GYN or IR since the UFE? If so, what’s your progress? I’m dying (NO — my fibroids are dying!) to find out what’s happened with us UFE Supergirls and our first measurements! (Not that I’m not thoroughly fascinated by all the AM updates — actually I’m a bit jealous of the AM’s and that their fibroids are gone, but, alas, that wasn’t an option for my fibroids).

  7. EclecticGeek Says:

    Hey, Aly Fibroids! 🙄 (testing new smilies)
    I have an appointment with my GYN in December. My first post-UFE measurement appointment (MRI with IR) isn’t until January (also 6 months post). Hmmm. 3 months is interesting. Do they then do another measurement 3 months after that?

    I had appointments with my doctors two weeks post:
    Is my Gynecologist Superman or Mighty Mouse?
    Does my Interventional Radiologist remind me of a comic book character?

    Nothing since then. My 3 month update post is right around the corner. Take off your shoe and throw it at me if I don’t have it posted within the next week or so. One day, I’ll phone both my GYN and IR to spread some of my insanity. I just haven’t had a chance.

    I’m also interested in updates. Hey! Where is everybody? There MUST be more “UFE Supergirls” out there! I’m inquisitive. That means nosy. Ladies, let me know what’s going on!

    I skipped AM because I didn’t want major surgery. Fertility wasn’t an issue so I wanted UFE. The funny thing is that one of the main UFE selling points for me was that it didn’t require general anesthesia. I really didn’t want general anesthesia only to be told by my GYN that I had to go completely under for the Hysteroscopic Myomectomy I had to have before the UFE. You should have seen the look on my face. 😯 Pretty funny. The second part to that was the conscious sedation used with UFE. I was all about the “being awake” and “remembering stuff”. Too bad it didn’t quite work out that way for me. I still remember nothing but that’s okay. I’m really happy with my decision. I actually leave my house and do stuff. Amazing.

    So, tell me how you’re doing? Not still scaring and scarring the kitty, are you? 😉 I know it can be rough dealing with this fibroid “thang”. The symptoms are crazy then you pick a treatment and that can be crazy. You finally make it through that and the recovery can be crazy. I appreciate that you keep visiting and posting and keeping the UFE banner up and flapping. Hope you are well.

  8. Nicole Says:

    Hey Eclectic,

    Thanks so much for this site which I just discovered a few days ago. I had a UFE on October 12th and am really feeling depressed about the longer-than anticipated recovery. Like everyone else, one of the selling points of the UFE was that there was a 7-10 day recovery period. The biggest problem I’m having is with fatigue. I am constantly exhausted and had expected I’d be back at work on Monday the 23rd and back to the gym the week after. I’ve been fortunate not to have very much cramping but I do have horrible pain in my ankle and foot, and a bit of swelling where they put the catheter. What’s been really disappointing has been the after-care. I had the procedure done in a hospital, not a clinic, so that’s probably why they seem to have completely forgotten me. I called the nurse a few days ago to express concern about my ankle swelling. She said she didn’t think it was anything to worry about but would talk to the doctor about it. She called back later that day, said he didn’t have time to talk with her, but didn’t appear at all concerned when she told him my symptoms. She then said she’d call back the next day and that I might come by the hospital for him to take a look. She never called. Also, because I’m so tired and the hospital is far away from where I live, I was just happy to plop back into bed and sleep. Has anyone else had problems with a never-ending feeling of being tired?

    Thanks very much for you support. Hope everyone is doing well and improving each day.

  9. Aly Fibroids Says:

    Nicole: You poor sweetie! I definitely hear where you’re coming from! Me, too! Me, too! Me, too! I was so ready for the “7 to 10” day recovery period, only to find that SURPRISE! Nope. My UFE was August 23, 2006, and the fog has just now lifted (not 100% better, but I’d say maybe 85% better — at least I’m not sleep walking these days).

    Take a look at my October 2 post above (also check out the “How are you feeling after uterine fibroid embolization” posts). I was running low-grade temps for four weeks. I was exhausted for four weeks (dog tired/bone tired/zombie tired). I was naseaus all the time and bloated (hence, my FREAKISHLY LARGE UTERUS). Absolutely hideous stuff that I was not expecting (and neither was the radiologist — he keeps apologizing to me).

    My only options for my fibroids were a full abdominal hysterectomy or the UFE. I figured that the UFE sounded like a breeze (lengthy shrinkage time), but a breeze, compared to a full hysterectomy. But during the past month I’ve had to bite my tongue from calling my GYN and demanding the hysterectomy.

    I’m absolutely speechless that your doctor hasn’t called you about the ankle/foot swelling and the UFE site swelling — if it’s continuing, you HAVE to call again and demand that they address it! I had leg/feet swelling about a week ago that turned out to be my FREAKISHLY LARGE UTERUS compressing my iliac vessels (it’s what happens to pregnant women and why they get vericose veins).

    I think that Eclectic has been having weird ankle/foot swelling, too. HEY Eclectic — did you speak to your doctor about your weird swelling? We need to help our sister UFE Supergirl, Nicole!

    [Edited by EclecticGeek to add link.]

  10. Nicole Says:

    Hi Aly.

    Thanks so much for your quick response. It really cheered me up. It’s so true that all the information out there focusses on the procedure itself but not about what happens afterwards. We seem to have been facing the same dilemma. My gynocologist told me the only other option was a hysterectomy and there was no way I was going to follow that advice if there was anything else I could do that might prevent it. I’m someone who is very much into alternative treatments and had spent a fortune on homeopathy, chinese medicine and various sorts of other treatments. Nothing helped but I spent close to two thousand dollars and couldn’t afford it anymore. I wasn’t very keen on having all this plastic injected into me but it’s amazing how my attitude changed when I compared it to having a hysterectomy. I had been having horrible bleeding that wouldn’t stop. The longest stretch was 63 consecutive days. At one point I had to rush myself to emergency. They did a blood test and discovered that I was severely anemic (a 60 hemoglobin) and I had to have two blood transfusions. I’d been terrified to go to the gynocologist and finally got up the courage to go. I had already been diagnosed with fibroids several years ago and suspected that was the cause, but I was scared to death that it might be something more serious. The side effects of the fibroids only began to surface last Christmas but by the time I had the UFE, my life had pretty much come to a halt. I couldn’t go anywhere without extra clothing, pads, etc. and I didn’t want to go anywhere anyway. It was so depressing!!! Aly, did your radiologist explain why you are still so bloated after the UFE? You mentioned that he’s been apologizing, but what’s his reasoning for this situation? Did you have the UFE done in a clinic or at the hospital? In terms of the bloating, my doctor said not to expect any visible difference at all for the first month, a big difference in the 2nd and 3rd months, and still a little bit more improvement in the 4th month. I’ll let you know how accurate this turns out to be. By the way, I loved your description of your “freakishly large uterus”. You sound like you have an awesome sense of humour. I actually named my fibroids (which I can’t believe I’m telling you), and tried to have some fun with the whole thing. Just my way of dealing with it I guess.

    Thanks again for your support and I’m so glad to hear that you are finally feeling a bit better.

    Stay strong!!!

    Nicole

  11. Aly Fibroids Says:

    Hey Nicole: Okay — you have to tell us your fibroids’ names (Mo, Larry, Curly?) How are you feeling this week? This is my 8th week post-UFE, and I do finally feel better (Wow. It’s my two-month anniversary). I definitely think it’s more a 7 to 10 week recovery period than a 7 to 10 day period. You need to take it a day at a time with this stuff.

    Neither my radiologist nor my GYN can give me a difinitive answer on my FREAKISHLY LARGE UTERUS other than that the embolization pissed my fibroids off big time. (Not exactly their words, but close).

    I was diagnosed with fibroids last October 2005, after experiencing missed periods and prolonged periods over the summer of 2005 (I’m 44, so I thought maybe it was just perimenopause). My heavy bleeding didn’t develop in to anemia, so I opted to “wait and see”. In July 2006 when I had the follow-up ultrasound to check on the fibroids, they had tripled in size and doubled in number, and my uterus was pressing against my hip sockets, my spine, and causing the usual trouble with my bladder and bowels. So, my “wait and see” approach backfired — my only options were full abdominal hysterectomy or the UFE. So, on to the hospital and a consultation with the radiologist, whom I promptly told if I’m a candidate, how soon can you do it?

    My first post-UFE measurement will be February 2007. I cannot wait. (I feel like an elephant or something — don’t they have like a twelve month gestation period?).

  12. EclecticGeek Says:

    UFE SUPERGIRLS… UNITE!

    Nicole:
    Sorry your UFE recovery has been rough. You’ve come to the right place. I have an odd sense of humor and that seems to attract others with same. (Yes, Aly Fibroids. This includes women who scare their cats.) I am also surprised by your after-care. My UFE was performed in a hospital and the care has been great. I met with my IR two weeks post-op to make sure everything was OK. This was the standard procedure to make sure I didn’t have an infection or post-embolization syndrome. I did have swelling but that seems to have improved. Haven’t really noticed it recently. Can’t say definitely yet because I’m STILL not exercising. I know – bad geek. Once I start working out regularly again, I should know more. My first post-UFE measurement is in January 2007. Does this also make me an elephant? 🙂

    Keep posting if you have more questions or concerns.

    Aly Fibroids:
    Haven’t talked to my IR yet. I want to ask him about the swelling and also DVT.

    If I had time to spare, I’d Google to find animals with long gestation periods. 😆

  13. Julia Says:

    Hi All!

    It’s been about a month since I even came to this site. I miss you all! I just haven’t had the energy since I’ve gone back to work full time.

    I had my UFE Aug 18. After my UFE, I was out for two whole weeks and then a third week half time and then a few weeks after that I was still going home early occasionally. I’m definitely in the 7-10 WEEKS recovery camp. I still get weird womb sensations especially around my period. BTW, and perhaps this is TMI, but I just started my 3rd period since the beginning of September. (Oh yeah… and my new ob/gyn is pressuring me to have surgery, because he thinks it’s ‘just crazy’ to wait a year (or two!) for the UFE to shrink the fibroids. Surgeons.)

    I’ve been feeling better, but my job is in a ‘crunch’ period and has been crazy and the ‘broids are NOT amused. Apparently now they have the ability to just shut down my whole body including my ability to form decent sentences. I usually don’t go out on Saturdays because I’m so wiped out from the week. I traveled for the first time yesterday (two short, bumpy flights), and I had a program at work today. I was dead. I ended up having a colleague lead it instead. I’m not going in tomorrow. Honestly I’m not in pain, I’m just dead tired.

    Does anyone else feel as if their UFE was a life-altering event? I do. I’ve never had a master plan for my life, but I guess I was just sort of resigned to what it was and having a little bit of joy here and there and hoping for more, maybe. Now I have a desire to re-do, re-vamp, re-start, change my whole life, especially now that I’ve gotten back to ‘normal’. Now that I’m back to ‘normal’, I see that I had more ‘life energy’ (for lack of a better term) when I was sick and nauseous and in pain.

    Do not get me wrong; I’m not a masochist. I don’t enjoy pain. Maybe it was just the time off that made me think about all of my routines and ruts, but I have to say during those weeks and half days off, I felt aware (not sure if that’s the right word) for the first time in years, not numb (that’s definitely the right word).

    Weird?

  14. Aly Fibroids Says:

    Julia — it’s so good to hear from you again! You are a definite UFE Supergirl. All of us are with all that weird stuff that wasn’t supposed to happen happening! 7 to 10 days my uterus!

    I think I’ve finally gotten over that awful tiredness. I was calling it dog tired/bone tired/zombie tired. AND not being able to form a sentence! That’s too funny and too true! I felt like I was playing charades every time I opened my mouth because I would just draw a blank (for the life of me I couldn’t remember nouns). My best girlfriend would just patiently fill in the blanks whenever we spoke. I love girlfriends. Strangers and clients I just avoided.

    I’m two months post-UFE, mine having been August 23 (just a few days after your torture). I’m still taking it a day at a time, but this may actually work. We’ll see in February.

    Keep posting!

  15. EclecticGeek Says:

    Julia:
    Welcome back! We missed you, too. No such thing as TMI on this site. Post as much as you want. When I would attempt to have conversations with my husband, I would often just stop mid-sentence. He was really starting to think I was crazy. He still does but only now for completely different reasons.

    Life-altering? OH MY, YES! This experience has completely changed the way I will live the rest of my life. My sister refers to my old life as “the treadmill”. The fibroids caused me to finally step off of the treadmill and take a good look around. I still have goals and many things I wish to accomplish but my priorities are redefined.

    Aly Fibroids:
    Glad you have more energy. I often think of the UFE Supergirls and hope everyone is okay. My next update is coming. I wanted to post it Friday but my period started so I figured I’d wait until it was over.

  16. Nicole Says:

    Julia:

    When I read your post (October 27th) it was as though I was reading something I could have written myself. I totally relate to what you were saying, not only about the fatigue, but also about the UFE being a life-changing event. I especially connected to your feelings of having “more life energy when you were sick”. Strange, isn’t it? I also had that feeling you describe of being “resigned” to life and just hoping for a bit of happiness here and there. In my own case, I’ve always had trouble with depression and the weird thing that happened during the UFE-phase (the doctor’s appointments, tests, etc.) was that it ended up distracting me from all the things that were bothering me before. During the time I was stuck at home, it really made me aware of the things I wanted to change. Now, of course, I want to make sure that I don’t let those feelings fade away but that I follow up on them and try and make some changes. It’s a bit scary for me but it’s definitely one of my goals. I hope you continue to feel better after your UFE and that you work towards making whatever changes you are looking for.

    Ally and Eclectic,

    Thanks for filling me in on your procedures. Hearing about your trouble with fatigue put my mind at rest that it wasn’t just me and that the 7-10 day recovery thing was just a tad optimistic.

    Nicole

  17. EclecticGeek Says:

    Nicole,

    No problem. It seems as though my worst recovery moments involved…CONSTIPATION (add echo). That’s why I did that “my wiring is kind of screwed” post. I know it can be scary to step out of a comfort zone and make changes but, to me, it’s also new and exciting. Hold on to the lessons you learn during this journey.

  18. Nicole Says:

    To All UFE Supergirls,

    Just wondering, for those of you who had the procedure done more than a couple of months ago, how long it took until you noticed that great stomach shrinkage which is supposed to happen.

    Aly Fibroids:

    So you were having trouble forming a sentence too? Thought it was just me. Had a blood test done the same time as the UFE, to see if my that nasty liver I had been eating, plus the iron supplements, had helped increase my hemoglobin. They forgot to forward the test results to my doctor and it took 3 weeks to finally get them to send me the results. The nurse on the phone told me, in a cheery voice, that she’d fax them to me today. Well, not only has my anemia worsened (a 75 hemoglobin when a normal reading is 120), but all my readings were extremely low. I can’t believe no one contacted me. No wonder I’ve been so tired. I don’t have a regular GP so will have to pass by a clinic to have someone interpret the results for me. Too many abbreviations to understand. I’m a bit worried about it, but I guess I’ll have to be brave and see what they tell me. Has anyone out there become seriously anemic from the fibroids? I’d had a couple of transfusions in August and had hoped that would help.

  19. EclecticGeek Says:

    Nicole,

    I’ll leave the stomach shrinkage question to some of the other UFE Supergirls. My fibroids weren’t huge so I’m starting to think most of my big belly was just plain old-fashioned fat.

    I will talk about the anemia. That’s what caused me to seek help. My hemoglobin got down to 6.7 out of 12 (67 out of 120). Can’t understand why you weren’t contacted. I had to have a Hysteroscopic Myomectomy before the UFE. My GYN wouldn’t do it until my anemia improved. He put me on Lupron (to slow my bleeding) and switched me to stronger iron pills and my level improved to 11.2 (112).

    Please see these posts:
    Uterine fibroid tumors and anemia?
    Big fat purple iron pills to treat my anemia
    Iron pills, Lupron injections, and the return of little Miss Perky

    I know it’s a little scary but now you know what was causing you to be so tired. There are things that can be done to correct it, especially once your bleeding is under control. I felt horrible this time last year. I was so tired and so weak. I literally had to crawl to my doctor’s office last December. I feel so much better now. Once the anemia is corrected, you will feel like a different person.

  20. Nicole Says:

    Eclectic Geek,

    Thanks so much for sending the posts about anemia. They’d suggested Lupron to me as well but I was a bit worried after doing research on it. Like you mentioned though in one of your earlier posts, everyone has to do what they feel is right for them. I’m really glad for you that the Lupron helped. Can I ask you what the purpose of the hysteroscopic myomectomy was if the fibroids were not that big? Was it done as a potential alternative treatment to the UFE (ie UFE might not be necessary if this procedure was a success?)

    Also, to everyone out there, did it take long for you to have a period after the UFE? I’m coming up on 4 weeks and still nothing. I’m a bit concerned because they told me that there was a 1% risk of being thrown into early menopause if they over-embellized me during the UFE procedure. I’ve read some of the earlier posts about getting really heavy periods the first time around, but I don’t remember anyone specifying how long it took before they got that first period.

    I’m sorry for all these questions. As I wrote earlier, it has been impossible to get in touch with my doctor and this website has been a great source of info.

    Thanks to everyone for taking the time to respond to my posts and for your encouragement. It’s much appreciated.

  21. Aly Fibroids Says:

    Hey Nicole! It’s me and my FREAKISHLY LARGE UTERUS here! I had my UFE on August 23, 2006. I had bleeding/discharge directly after that for about 10 days. Then I started what I think was my first post-UFE period on September 13. That was really, really heavy and lasted about 10 days. Then my second post-UFE period started October 6 — that wasn’t as heavy as the first one, but that one also lasted about 10 days. I haven’t had my third post-UFE period yet. So my first two periods were, what? 20-21 days apart? And now it’s been 35 days and I haven’t started my period yet — I’d say I was pregnant, but I haven’t had sex in, let’s see, OH YEAH, since last year!

    Well, I can see that this doesn’t help at all. There’s no rhyme or reason with this post-UFE menstruation stuff either! Hmmm, it’s looking suspiciously like that so-callled 7 to 10 day recovery period that had alluded me after the UFE.

    Oh, and P.S.: I’m 44 years old, so with the estrogen and progestrone levels going up and down, who the heck knows why I’m having a 35 day period reprieve.

  22. Nicole Says:

    Aly Fibroids,

    You’re a riot!!! I love reading your posts. I guess this message board shows how unique all our situations are. I just hope they haven’t sent me flying into an early menopause. I’m 42 so that would be a bit of drag. Then again, it sure as heck beats having 63 days periods. As for my now 31 day reprieve, it’s pretty unlikely that I’m pregnant. Other than that weekend with Brad Pitt last month, it would be virtually impossible.

  23. EclecticGeek Says:

    UFE Supergirls crack me up! 😆

    Nicole:
    Glad the anemia links were helpful. I originally only wanted a UFE. The Radiologist looked at my MRI images and was concerned about a couple of fibroids that would possibly cause problems. I thought one would be the larger pedunculated subserosal one that was attached to the outside of my uterus by a stalk. Nope. It was a couple of smaller submucosal ones. Since they were right on the inside, they produced a risk of infection post-UFE if they died and detached but did not pass from my body. Needed the Hysteroscopic Myomectomy to shave them down before my UFE.

    My GYN wouldn’t do the HM until my anemia was reversed. That’s why I needed the Lupron. I also researched Lupron. I know some women have problems with it but I felt well-informed. I was also prepared to stop the injections if, at any time, I felt uneasy or uncomfortable. It helped me but I completely understand women who don’t want to deal with it.

    I’m sure there are women who think I’m crazy for taking Lupron injections but turning down blood transfusions. It IS all about choice and what feels right for that individual. In my mind, I had to be OK with each step along the way. If something didn’t feel right or I couldn’t embrace it, I didn’t do it. Um, now that I think about it… this did not apply to my first few moments in the MRI. I really wanted out but it ended well. 😉

    My UFE was July 18, 2006. I also had a discharge (pinkish in color) for about 10 days after. If you don’t include that, my first period started August 14 (27 days post-UFE).

    Weekend with Brad Pitt? I am quite jealous!

    Keep any other questions or concerns coming.

    Aly Fibroids:
    Am I the 40-year old “baby” of the crowd? Yeah, right. I’m even laughing at that one!

  24. Kulvinder Says:

    I had my UAE on the 16th of October. I am tired all the time, so tired that I cannot get out of bed. My appetite on days is zero and I fell sick most of the time.

    If I do eat, I get a tummy ache and ahve to go back to bed. I hope all this suffering is going to worth it at my three month scan.

  25. Nicole Says:

    Kulvinder,

    I wanted to give you a few words of encouragement after I read your post. I had my UFE done just a few days before you, on the 12th, and it’s just now that I am starting to get my energy level back. Like most people on this site, the recovery was a lot harder than the 7-10 day projection the doctor had given me. Do you know if you are anemic? If the fibroids were causing you to lose a lot of blood you might have become anemic. That could also be the reason for the fatigue lasting this long after the procedure (it takes awhile for your blood levels to come back to normal). Even if that’s not the case, the excessive fatigue seems to be a symptom that lots of the women here have had to deal with. I know it’s really discouraging but if you can tough it out just a bit longer, you should soon start to see your energy level come back up to where it was before your UFE.

  26. EclecticGeek Says:

    Kulvinder:
    Nicole mentioned a good point so I’ll leave a link to the anemia post again:
    Uterine fibroid tumors and anemia?

    As far as the stomach problems:
    Do you think it could be constipation? I know I had some problems right after my procedure. Even after the initial constipation cleared, it still took a little time before my digestive system felt completely normal.

    Nicole:
    Thanks for leaving the words of encouragement. I wish every woman could fall into that “7-10 day” window but I know that’s not reality. I appreciate the experience you share.

  27. Kulvinder Says:

    Thanks for the feedback

    I am getting some stamina back, appetite is still low and my stomach is still bloated.
    I was looking forward to my tummy going down just a bit but it seems that nothing has changed.

  28. Nicole Says:

    Kulvinder

    My doctor told me that there is no noticeable difference with the stomach shrinkage for the first month. After that though, he says there’s a big difference in the 2nd and 3rd month, and a bit more in the 4th. The nurse told me some women take as much as 6 months to see a difference. I was really disappointed about that because I was so tired and feeling so crappy that I at least wanted to have a nice flat stomach as a bit of a reward for having gone through this UFE thing. I told my doctor that my standards weren’t too high. I just wanted to have Halle Berry’s abs (I can’t remember the movie but there is this scene they always show where she is coming out of the water in this little bikini with these rock hard abs). Sounded like a reasonable request to me but I don’t think my doctor found it particularly amusing. Anyway, in another few weeks you should start to see changes happening. Even with my doctor telling me not to expect anything for the first month, I still find myself waking up in the morning and running to the mirror to see if I’ve transformed into a supermodel. A girl can dream, can’t she?

  29. EclecticGeek Says:

    Kulvinder and Nicole,

    I’ve had “ab issues” (and other body parts) for many, many, many years. The fibroids just made it all blatantly obvious. I started trying to lose weight back in March while I was on Lupron. My anemia was reversing so I had the energy. Decided to start moderately working out again. I’m giving myself until next March to get to my goal weight. For me, I knew it was going to take some time because I gained a tremendous amount of weight that had nothing to do with fibroids. I am a few days away from 4 months post-UFE. My stomach is much flatter but I can’t say how much is due to shrinking fibroids and how much is due to diminishing fat! 😀

    I’ll know more in January when I see new MRI images. Just excited that I can now fit into clothes I haven’t worn in a couple of years. It gets better. Give it some time. You’ll see.

  30. Nicole Says:

    EclecticGeek,

    You must be really excited for January and seeing those new MRI images. I’m also scheduled for my first post-UFE MRI in January. Maybe we’ll be able to compare notes. Congratulations on starting up you workouts again. I just started working out again as well. It was hard at the beginning but it really feels good to be physically active (I had to stop for a few months because any type of exercise I did aggravated the bleeding I was having from the fibroids). It must be a great feeling to fit into clothes you haven’t worn for years. That’s the best motivation you can have to keep working out. I’m going to follow your advice and be patient. I’m just happy the UFE has been done and the bleeding has stopped. If anyone had asked me a few months ago what I wanted out of the procedure, that’s all I would have cared about anyway. I have to remember that and be happy with the results I’ve already achieved. Even if I don’t wind up with a flat stomach, it’s definitely not the most important thing in the world.

  31. Kulvinder Says:

    Thank you Guys

    Your posts do make me feel much better and I do appreciate the support.

    I am going to change my deit and am am really looking forward to mu tummy going down
    in the second and third month post UAE. (Fingers Crossed.)

    At present I look 28 weeks pregant and its also very painful to carry around.

    I still were maternity clothes.

    I just want to look proportionate to the rest of my body and not as if I have been pregnant for the past 10 years.

    Good luck to you all

  32. EclecticGeek Says:

    Nicole:
    I AM excited about seeing my images in January. I know something has happened in there because my periods are NOTHING like they were previously. Have to assume at least some shrinkage occurred.

    Happy to hear that you’ve started working out again. I must confess. I really don’t like exercising so your congratulations means more than you’ll ever know. 😀 I put on my CD (lots of U2 of course), start singing, and make it through.

    Small victories mean everything. The clothes I wear now, I couldn’t even get past my thighs before. When I did, I cheered. Over my behind? Another cheer. Buttoned AND zipped? Time to party!

    Kulvinder:
    Glad you’re feeling better. I didn’t have to sport maternity clothes but ONLY because I married a big man. I just wore his T-shirts and sweaters. 😉 Make moderate changes and give it time. One day, you’ll look back on your comments here and smile.


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