How are you using your fibroid voice?

Well, I guess my Prince post on yesterday about having a voice was more cathartic than I originally thought…

I started this blog a little on the edgy, half-crazed side and then a few months into it, I changed into a kinder, gentler geek. Now, I feel the need to return to my previous level of insanity. 😉

Some background: January of 2006, after “researching” online, I picked Uterine Fibroid Embolization as my treatment option. Because of the location of a couple of my fibroids, the Interventional Radiologist didn’t want to perform the procedure until I had another procedure first. The IR talked to my Gynecologist and the Dynamic Duo came up with plan. I needed a Hysteroscopic Myomectomy before the UFE. No problem, right? Not so fast. My GYN would not do the surgery until my hemoglobin level improved. In addition to the industrial-strength iron pills, I also required… Lupron (insert echo).

Went back online, “researched” Lupron, and was flabbergasted by what I saw. Literally “cartoon-like shaking of the head” flabbergasted. The drug had been approved by the FDA and my doctor prescribed it. Yet, according to the Internet, I should run shrieking into the night to avoid it. Believe me, I am not trying to diminish anyone’s experience but I needed to use Lupron and to do so without fear. After cracking open my Pharmacology book, reading about the whole drug class (gonadotropin-releasing hormone agonists) and then trusting my GYN’s judgement, I started the Lupron injections. I completed 3 months and definitely experienced the benefits. Oh, it wasn’t perfect. I also experienced some of the side effects but (for me) the benefits outweighed the risks. It’s another informed medical decision that many people must make. You really do have to think about a bell curve when it comes to treatments. MOST who undergo a fibroid treatment will benefit. Unfortunately, most who benefit will not come online and talk about it.

Ah, the genesis and evolution of this site: That whole Internet “Lupron will kill you” experience really caused me to stop and think about this fibroid problem in general. By its nature, the Internet draws negative experiences. It’s coloring perceptions. I wanted to use my fibroid voice in a positive way and felt the need to create something geeky and more balanced to stimulate discussion. I started writing after I finished my Lupron shots and kept it up through my other treatments and (now) continue to write post-procedure. The blog is filled with my personal ramblings (over 170 separate posts so far). I soon discovered that there are lots of women with lots of questions and I had to come out of my comfort zone and broaden my scope. That’s when I posted about different topics and put together the Forum. For a little while, I became “warm and fuzzy” geek and worked on the support function of the site. The community is developing nicely but there is one problem…

Most of you only visit one or two posts. I do appreciate the visits. You are helping other women going through the same treatment tremendously but I know a lot of you have more to say. So, when you get a chance, wander around the site a bit. Visit other pages. Say what’s on your mind. Sometimes you won’t get a response but realize that you are being seen by many.

How are you using your fibroid voice?

——————–

Related Post:
Go to the Forum page, look over the list of posts, click on some of them and use your fibroid voice!

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24 Responses to “How are you using your fibroid voice?”

  1. Jess (AM on 1/30) Says:

    I have to say, what you wrote about Lupron resonated with me.

    All of this fibroid stuff happened really fast for me…dr found my fibroid in august 2006…it was already 8 cm…grew to 9 cm by November 2006. When we saw it had grown in November, my dr, whom I trusted and liked, advised that (1) we take it out, and (2) I take 3 months of Lupron injections, the first of which had to be that day (given where I was in my cycle). I didn’t know much about Lupron other than what I had read, but I trusted him and took the first shot that day. I was scared of what was to come. I got home and went to the Yahoo fibroids group that I had recently joined, and asked the members for support and help.

    Well, I couldn’t believe the responses I got. I felt completely criticized. The women told me not to take Lupron…”it is poison”…”any good doctor won’t make you take it”….”the side effects are unbearable and long lasting”…”it only makes the surgery harder”…etc. I was horrified and extremely upset. The people who wrote these things disregarded that I already had taken the Lupron, and that I was therefore committed to it. I began to second-guess my own decision making and the skills of my doctor, and you don’t want to do either of those things when going through something like this. I have to say the 6 weeks that followed were some of the hardest days of my life. On top of the side effects I was experiencing, I was terrified.

    A week before my 3rd injection I told the dr that I couldn’t take it anymore. He did another ultrasound and saw that my fibroid did not shrink. So, I didn’t have to take the 3rd shot (hallelujia). We moved the surgery up, and I began the 2 week countdown to surgery.

    About a week before my surgery I came across this site while at work one day. I really had no one to talk to about any of this stuff, and continued to get little support from the yahoo board (which I, perhaps masochistically, still was reading daily at the time), so I would sometimes search the internet for information, advice, anything. I immediately saw how different this board is. These women don’t judge or criticize each other…we support and help each other, and it is INVALUABLE. I “unsubscribed” from the yahoo board the day I found this site.

    So how am I using my fibroid voice? Well, I FOUND my fibroid voice on this site. It is a voice that allows me to ask questions and to read information and to feel supported without having to doubt myself or my choices, even if they are not the choices of others here. It is a voice that I will take with me when I’m back into my life once this recovery is over. It is no longer a voice filled with fear and terror.

    I’m not sure if this is the type of post you had in mind, but it’s what came to me when I read your intro above.

    Thanks for this site and for all the help it has given me.

    Jess

  2. EclecticGeek Says:

    Hi Jess,

    Your post is exactly what I had in mind. 🙂

    I’m so sorry that in addition to not being able to find the support you needed at that crucial time, you felt criticized. That’s actually the core of my post on the real issue with fibroids. We really do need to come together and be supportive of every woman dealing with fibroids. That’s what I’m trying to accomplish.

    I’m so glad you made your way here, found your fibroid voice, and willingly share it with others. I thank you for your thoughts. Your post brought tears to my eyes.

    Take care.

  3. fibroid free Says:

    Oh I always had a big voice so I was SO glad to be able to express it on this site. ..all over LOL How am I using my fibroid free voice???

    This blog provided me a chance to tell not only my story but hoped to inform and support women who were going though what I thought to be the end all horror. I had support from family and freinds but I know everyone does not have that…so I hope to provide that as well for a difficult and often very personal emotional experience …fibroids. Heck this whole experience changed my husband…more on that later….

    That is why 6 months later I am still here…I got my support after surgery and plan to continue to give it….After I had surgery I thought gee it would be nice to know what to expect 6 months from now after havng surgery – How will I feel??? or nice to know if you do get pregnant after a AM (although I realize that is not the focus of this site and repect that)..WELL…I guess I can be that resource for others now….I dont know if they listen but I post my novellettes anyway….

    The one thing I tried not to do was judge (as I would see on other sites while lerking) That is just why I have never really posted to many sites- I didnt like the vibes I got…

    But when I came here…I would give advice – even tried to direct women to the other forums in the site (or you know me put in a HINT to include a link so others would wonder aroudn the site more) when they were trying to make a choice -UFE.,AM, LM, herbal natural….My thing was just be INFORMED becuase KNOWLEDGE IS POWER…so you dont have to do one or the other or take somethign that is not for you…but dont stop others and scare tactics are not fair!!!

    I would give advice from my perspective (and always try to state that…I’m no doctor or its different for each women or I think I represent an extreme case). You are so right about the Lupron – its like a scare fest on the internet….Hey its an option that is good for some. I chose not to take it but I did not knock anyone else who did…its personal choice just like everything else in life.

    EG – ya know…this site is like a child…you started it and watched it grow…now its time for “discipline.”..you didnt get soft…it was just a growth spert…but I do get your point..

    I love reading all the post (you see my stick my head in area’s I have not experienced) but sometimes its just the support or provide a different twisted LOL perspecive or ….I wanted to learn..plus I love all the geeky articels and news

    Before this site I would say I had abdominal surgery now if a women asks me I tell her I had surgery to remove fibroids and perserve my fertility . I am surprised at the response I get now …it usually opens the door for a women who is having symptoms to feel comfortable to ask questions and see she is not alone with her issue. My neigbor across the street (older lady love her) asked me about my surgery (she didnt see me this fall in my garden working and asked hubby about me) and I told her I had fibroids removed to try and get pregnant. Tears came to her eyes because she said in her day there was no option but a hystorectomy and she knows now that fibroids stopped her from ever having kids….

    I am using my voice to educate and empower women!

  4. fibroid free Says:

    SORRY that is wierd – I didnt get that you “already posted warning”… sorry for DOUBLE SPEAK l ha ha hlolo I crack me up….

    oh I mentioned my husband changing…bust this…education is the key. He was always supportative but would get the BLANK look when I talked about specifics or periods… BOY he has grown cause the other day he asked me ..” when is your period starting” I had to look aroudn to see if that was really his mouth moving….. uhhh in a few days…You feeling ok??? yeah a little sad (Ttc here) but also aprehensive cause (I saw the door open and decided on go though it) cause well its getting better….humm go for it go for it!! I heard myself saying…well it used to be 15 day period before surgery and after surgery its was back to 5 days by my peiod was really heavy and lots of pain, december you remember was horrible bleed all month. HE WAS ACTUALLY LISTEING NO BLANK LOOK, but last month 5 days with 3 days of pain this time 5 days with 1 day of pain (yeah its still bad for 1 day…I keep him up all night maonign and groaing ). He said ..You are getting better becuase before surgery WOW you ..you I dont know how you did it… I looked at you the other day/night and thought wow that’s gotta be aweful…WHAT T DOES IT FEEL LIKE????? I gasped and welled up…. first I said “I survived it with your support hon…. its better now….” and then explained best I could what it felt like. I COULD NOT BELIVE WE WERE HAVIG THIS CONVERSATION AT THE TABLE….its like a really bad charlie horse that wont go away for hours on end but in your privates….OHHHHHH

    THen the other day I was in the bathroom (ugg the heavy period still) for a while and when I came out he said…you were in there so long I thought you were gonna come out with the RED DRAGON CAPE on. NOw you have to understand THAT SH*T was funny.. funny because HE NEVER NEVER EVER said anything like that to me…He has grown tremendously as a person, espeically as a man during this ordeal.

    Life is so much better and funnier since the fibroids are gone….

    talking about it takes the fear out of it

  5. Been There Says:

    Thanks to all who post here! This site has been immensely helpful to me. I came across it months back when I was researching fibroids and Lupron in particular. The things I read about Lupron other places scared me, but the experiences here gave me the courage to give it a try. I had already been through 2 other unsuccessful rounds of hormone treatment for heavy bleeding due to fibroids, and this was a last step before opting for surgery.

    It helped to hear what Lupron did in real life…my doctor told me the bleeding should stop for sure after the second shot. Theoretically yes, but in real life that was not the case. Finally after shot number 3 things let up, the massive iron doses could do their thing and my hemoglobin went back to an acceptable level. The fibroids were still sitting on my bladder though, so I had a decision to make.

    In the end I opted for an abdominal hysterectomy. My Dr. felt it was the safest option due to size of fibroids and previous surgery. I am now 2 weeks post surgery and am well on the road to recovery. I haven’t posted here prior to this week as I have felt like I was older than many of you (49), done having kids and sort of facing different issues and decisions. The reading I have done here since my surgery makes me realize that the fact we are all dealing with or have dealt with fibroids does a lot to overcome those differences. Thanks to all of you and best wishes for wisdom and healing on your fibroid journeys.

  6. fibroid free Says:

    Been they – so glad you posted and shared your thought….I think this site is about the ability to get the message out ..getting other women no matter what age to understand or provide knowledge… I hope you continue to share for all the women of the world who face fibroids…we would love to hear your expericence.

    There are so many facets of this web site that could use some posting….like your experience and what you face if you chose to tell. The more you post your story the more women can use the experiece to help make a decision….

    I love to hear sucess stories for all women….sucess over the battle of the broids…

  7. EclecticGeek Says:

    A very big THANK YOU to those who do wander around the site. The movement itself (whether you post or not) is much appreciated and just what EclecticGeek likes to see. {{{hugs}}}

    fibroid free:
    Yeah, that double post was weird. They both had the exact same timestamp… Twilight Zone.

    I appreciate you continuing to come back with your fibroid voice and offering your advice and support. I do miss the hints and directions you would leave to get people to wander around the site. That’s one of the problems here (as you can tell from my last couple of posts). Remember how you would be the only one to leave a comment in some of my posts and I would say how you were the only one reading. Well, that’s kind of true. It doesn’t bother me that nobody reads my crazy obscure posts. Okay, I am a little upset that I don’t get traffic on that toilet paper post (LOL) but the others, I don’t care. What disappoints me greatly is that people are commenting on one topic but don’t even bother to look in the Forum and AT LEAST find out what else is being discussed on the site. That way, they could do what you do and direct others. That’s a true community. Not just being concerned about people going through the EXACT same thing as you but also helping those experiencing something a little different.

    That’s how the AM forum was born. I had no intention originally to talk about AM. My blog was going to be about my experiences with Lupron, the Hysteroscopic Myomectomy, and UFE. It’s what I knew firsthand. Of course, I planned on talking about the science behind fibroids from the very beginning because I’m a geek. But the personal stuff, just those 3 treatments.

    You came along and I soon realized I was obligated to expand the topics here. So, I really did come out of my comfort zone and created a separate post on AM. It’s great and I continue to learn a lot. The same thing happened with fertility. I really didn’t plan on talking about fertility. I’m thinking of Been There’s comment as I type this. I am 40 and have no children. I don’t plan on ever having children. I am child-free and happy. (I wonder how many women will stampede off the site after learning that. LOL) Once again, you talked about that and I realized the importance of fibroids and fertility. I created a separate post. It didn’t take off like I thought but I do notice some new discussion there. That’s encouraging.

    I will say this. If you are willing, I can create a “Are you ttc after your myomectomy” post and you can walk us through exactly what you have been doing since your surgery. I did receive an email from someone a couple of days ago interested in a post like that. Just a thought if you’re interested. (Fibroid free, this next part isn’t addressed to you because you post everywhere.) I only ask that if a separate forum is started that we don’t forget about those in the first fertility forum.

    Back to my point. My choices should in no way affect my ability to understand what any other woman with fibroids is going through. I took Lupron but I totally understand why some women wouldn’t. I decided to keep my uterus but I totally understand women who want it out. I am child-free but I totally understand women who do all they can to increase their chances of conceiving. NOTHING I have been through or decision I have made will stop me from bursting into tears (with big ugly “boo-hoo” face) when you come here one day and say you are pregnant. 😀

    Thank your husband for me. His personal growth and continued support is inspiring.

    Been There:
    Let me first thank you for posting in a different forum today. I’m all about cross-communication and that was a perfect example of using your fibroid voice. I’m hoping others will follow the trend. It’s been bothering me recently that this wasn’t happening but the cross-visiting and posting today has been uplifting to me. It’s the perfect early Valentine’s Day gift. 🙂

    I’m glad you decided to start posting. I want every woman to feel comfortable here. My blog is public so it’s not perfect. But I will personally do all I can to make this place a good one for the mind, body, and spirit. Dealing with the fibroids, medical decisions, and recoveries is hard enough. We all need a supportive place to visit no matter what we are going through.

    Best wishes!

  8. Tina (1/24) Says:

    This is a very interesting forum topic. Funny, I rarely spoke about the 10 cm fibroid I had in my belly while it was there. Not because of the pain or bloating. But because I was embarrased of my sudden imperfection. I had this thing inside of me that should not be there. Even changing my diet and lifestyle a full 180 did not get rid of it. The wind was blown out of my sails. I felt defeated. And then… I found this website, this community of strong women who were also going through similar experiences. And they empowered me. Through their posts I recognized that my decision to have an AM was the right one for me. They saw me through my pre and post op days, and still I find support in their experiences. So now it is my turn to give back to this community and I hope my posts and fibroid-free voice add value to these forums. Thanks EG for bringing us together.

  9. fibroid free Says:

    Thanks EG – yeah I remember when I first got to theis site and Aly Fibroid was here with her “FLU” (I leark in that forum to see how she is doing sometimes) and a few others I see pop in again from time to time…LOL.. and you started the AM thread…I so appreiated you for that and still do. From her post and yours I referred two of my friends here to read as they were thinking about UFE..

    It ws funny – “in those days” you had to read EVERYONES post regardless of their surgery or treatment option choice – there were only a few threads (the fiborids thread and all the funny or educational threads LOL) …I read stories that made me feel lucky and it really taught me to support others on this community. NOw on the flip side I got super support from others whose cases was not a bad as mine.

    I rememebr you would post a thought in your head and EVERYONE woudl join in to comment -mad, sad, gald, fibroid weights..I coudl go on….that is what made this site fantastic (it still is really!!) the humor and human side to an often devestating and emotional experience – FIBROIDS

    THe AM thread is definitly a hit but I also wonder if ladies look at anything else or read any ones elses story about fibroids.???? Other womens share the same feelings and fears they just decide on a different outcome of surgery- everyone needs support….”Been there’s” point really hit me hard as she didnt feel (I am asuming sorry if I am wrong ) the support system she may have been looking since her circumstances appeared to be different. I am interested because ya know one day I may be in the same situation or whenI am done with havig kids want another option if periods dont get better or more fibroids grow …I want to learn (guess that is why I am a geek)

    I have always referred women who I see on a thread (could be somethign like the sad, mad, glad thread) posting, not real familiar with the site and what is there and I woudl tell them check out the AM, of UFE or LM threads (and of course your link would appear LoL…Promise to leave more of those) I actually stopped becuase it did not seemed like anyone read the or used the links to other forums and threads….

    and the ttc post…thanks..I thought about it at first and was like…well that kind of thread will take EG WAYYYYYY off her mark with what she wants to do on this site.. Talk and educate women about fibroids. I have been to TTC after AM threads and wow its just mind boggling…it can end up out of control ( in my opinion) so I was hesitant in saying yes but if others feel there is a need I can certaintly share what I am tryign to do as well as contiue to share my thoughts on the infertiltiy and fibroids forum (yeah we get some pretty good traffic from time to time..I think it will pick up). What I dont want to see is the ttc after AM thread become the focal point of this site and then you have a bunch of visitors who only post there….TTC can be a desperate situation for some women (the same level of desperation some of us including myself felt having and dealing with fibroids) so I will post and we will see how it goes….and I will be honest with you if I think it gets out of control and away form the purpose of this site…..

    oh no lets go (you got me stuck on the whole Prince thing…had to pull out my CD and put it back in the CD car changer LOL)

    humm missed a few days …been super busy at work…let see what else you created of Mistress of Geekdom!!!!

    thanks again for all that you do here!!!

  10. Same Boat! Says:

    just a quick hello to let you know i’m trying to snoop around per yr suggestion EG. part of it is that this is the first blog i’ve ever posted on & am not so super-sure that i have the navigation down, but i’m trying… which loops back around to the fact iterated time & again that this whole dealing-with-fibroids experience goes far beyond it’s literal bounds…

    anyway: had what i hope will be my last consult today with someone recc’d by another lady on this site. v/pleased that at least the diagnosis seems to be the same. now it’s just about choosing the “winning” doc. ….more about that next post…

    best all,

    SB

  11. EclecticGeek Says:

    Tina (1/24):
    This post and a bunch of others evolved out of things I started to observe around the site. Enough that I thought something should be said. We all have the power to educate and make a difference.

    Your self-discovery is what I hope for every woman dealing with fibroids. You really do have to make the choice best for you without guilt and without fear. In addition to the geeky stuff, I hope I am fostering that type of self-discovery here.

    Thank you for your help around the site. I read every comment. Sometimes it takes a little while for me to respond but I read every single one.

    fibroid free:
    Parts of my blog have been getting out of hand but I’m taking strong measures to resolve that. I don’t understand why more women won’t look at all that’s offered here. I’m not talking about the ones who have trouble getting around. This is a blog and sometimes it is hard to find stuff. I’m talking about the ones who know exactly how to navigate but ignore everything even after I keep asking them to visit other pages.

    I miss your hints and cues that directed people to the Forum or specific posts. It was very easy to go in and add links for them to follow. Don’t worry. Things are “gonna” change. I REFUSE to get bogged down on one or two pages of this site to the detriment of the others. Hence, these posts:

    My fibroid blog is NOT your personal chat room

    I did NOT create my fibroid blog to make friends

    I created a ttc after AM forum. It’s not off my mark. It’s a fibroid issue so I don’t mind a discussion taking place. Oh, it won’t get out of control. I’ve already threatened to close comments or delete the whole kit and caboodle on another page of this site. I don’t think we’ll have any more discussions on my blog that get out of hand.

    If you want to add comments on the new ttc forum or just monitor the previous fertility forum, that’s fine. I’ll leave it up to you. I completely understand your thoughts about it.

    Oh, no. Let’s go… CRAZY! Yeah, I’m pulling out the old CDs. LOL

    Same Boat!:
    I’ve seen you moving around the site and posting. I’ll start to respond more. I just had to get some things under control and make a some changes to the site that will hopefully help with navigation.

    Thanks for your visits and for your “snooping”! 🙂

  12. malexmom Says:

    Another voice speaking up! I think I’ve read everything there is on this wonderful, supportive site – I don’t always leave posts (I’m one of those virgin bloggers and not always sure where its appropriate) Yesterday I watched an entire Laperscopic Hysterectomy courtesy of this site, and it was incredibly helpful to see exactly what was involved (since I’m scheduled for one in June if my focused ultrasound study doesn’t get going in time). I get my first Lupron injection on Friday, and at the risk of sounding repetitive, I AM SO SCARED!!!!. Is there another place on the site where it would be better to look for support about this? I really feel like I’m going to need some hand holding through this (sob). I don’t think I’ve found my “fibroid voice” yet (I felt so uncool when after my first post about “froids” I discovered that the preferred term is “broids). I work in the human services field and am much more used to giving support than getting it – anyway…..

  13. Katharine Says:

    Hang in there! I am supposed to get a Lupron injection next week. Let me know if you have any side effects. It is normal to be scared.

  14. Cordelia Says:

    Hi, I am geeky too, and researched fibroids quite extensively before eventually getting treatment. I should mention that I live in the UK which has a different kind of health system than the US.

    My steps between ‘realising I had fibroids’ and ‘Getting treatment”:

    1.) Realising that my periods were completely abnormal. Research menorrhagia online, discover that I have all the symptoms of fibroids. (too young to fit profile though)

    2) Order some books about fibroids online… Skim the books during my commute. My ‘diagnosis’ confirmed. Bought Vitalzym online (this product does NOT help for bad fibroids!)

    3.) Pull myself together and see my GP about it. (2 months later)

    4.) Doctor thinks I am exaggerating and gives me ‘mefenamic acid’ a pain killer. After I insisted, he agreed to send me for an ultrasound scan.

    5) 1.5 month later:Had the ultrasound. The technician said: You’ve got a really large fibroid! Thinking ‘Yes, I knew that 4 months ago.’

    7) 3 weeks later: See my GP to discuss the results. A different doctor is there this time. She discovers I have severe anemia and refers me to the hospital to discuss treatment options.

    8) 2 months later: Saw a useless doctor at the hospital. She insisted I take a 3 month course of ‘Tranexamic Acid’ to see if that improves the bleeding. Until that is complete, nothing can be done..

    9) 3.5 months later: Back to the hospital again, a different doctor this time. Told her that the Tranexamic Acid didn’t help. She suddenly suggested Uterine Fibroid Embolization UFE.

    10) Hurrah! I remembered that from my books as the most technical and forward treatments. Hadn’t expected that to be an option. I had thought I needed myomectomy. The bad news is that the turnaround is 3-4 months before you can have the procedure.

    11) A consultation with the interventional radiologist, an MRI scan and then finally, the UFE PROCEDURE!!!!!
    Approximately one year after I initially realised I had fibroids and what the best treatment (i.e. UFE) was.

    What worries me is: What if I hadn’t been switched on with regards to this, inquisitive and insisting that the ‘case’ was progressing… I probably wouldn’t have had treatment!
    Or maybe I would have ended up with a hysterectomy five years from now, after having been seriously anemic for years and years… !
    Scary thought!

    Thanks ECCLECTIC GEEK for you fantastic site!

    Love to all fibroid sisters!
    Cordelia
    My blog entry about suffering from fibroids
    Engry about having UFE in the UK

  15. Jess (AM on 1/30) Says:

    Maxelmom and Katharine…there is a thread on this site about Lupron. I wish I had known about it while I was taking Lupron. Good luck and keep posting.
    Jess

  16. malexmom Says:

    Hi all (Katherine and Jess especially) I found the Lupron thread and have posted specific details there, but the basic gyst (jist?) is that its been a week and everything is fine fine fine!

  17. Sophia Says:

    Darn, I want to stand up on a soap box and tell women that are suffering with this condition that there are choices, and how much they can rob from us. So many are afraid of the whole concept of surgery, but honestly my surgery has given me back a wonderful life. There was so much that I thought was just because I was getting older, what a silly mistake that was on my part.

    Having your fibroids medically treated is the best gift that we can give to ourselves as women, there is no need to just accept it, and try to deal with it. They cause so many other physical complications that I don’t think anyone should suffer because of these tumors.

    I’ll get off of my soap box now….

    Sophia

  18. Rowe Says:

    I think there’s been a lot of talk about the pluses and minuses of Lupron, etc, but I am hoping that High Intensity Focused Ultrasound (HIFU)is what we will be talking about in the future. Unfortunately, I wasn’t willing to go through the insurance hassle to make it available to me, but I am hoping it will be available for women with fibroids in the future as an alternative to Lupron or other methods to shrink fibroids pre-treatement, or simply as a treatment option for fibroids.

    It might not be the cure-all in all cases but it will be at a minimum a “first stage” option to kill the fibroid(s) and shrink it slightly, which would do a number of things including giving women with fast-growing fibroids time to seek out other options like UAE, etc., make myomecytomies less risky, and increase post procedure downtime.

    If you are interested in HIFU there are several hospitals in the US now offering this procedure in places like Boston, Beverly Hills, Atlanta, Philly, Las Vegas, and some insurance companies are footing the bill so please make sure women know this might be an option for them. It is not evasive at all and from what I’ve read from bloggers, women are home the same day and even out walking the next day in many cases.

  19. Julie Says:

    I am new to doing blogs and searching through this website. Can someone give quick tips? I am very excited to find this though. And will pass on to women with problems. I just had second surgery, open uterine myomectomy, to remove 6 fibroids most very large and I’m very small women. Like one lady earlier, I’ve been having problems for years only to have useless Drs try to blow off my symptoms and tell me to deal etc. Problems got to the emergency level in order for me to search out a really good Dr. which I found. He has been a life savor for me. Dr. Joel Engel. I advise anyone to go to him. He couldn’t believe how other Drs had let this slip which made me very angry at first. So I hope since my experience to help other women gain knowledge too and search out proper help for their individual needs. I too still would like to hear about recovery, whatt to expect, what’s normal, and fertility… Thanks for taking time to start this and to all the women taking time to write. Tell me where to share my full story for anyone? how to get answers my specific questions..
    Thanks-Julie

  20. Amy Says:

    Welcome Julie, there is a lot on this site, try going to:

    http://blog.geekwithfibroids.com/2007/03/25/how-are-you-feeling-after-your-abdominal-myomectomy-part-4/

    to find other women who have had or are having them removed…

  21. jennifer ogaga Says:

    l love this website l will be grateful if you can advice me of what to do was diagonise of uterine fibriod 6.5cm dont want surgrey

  22. salamary Says:

    I’ve looked through this site for about a week now. There’s a lot of information. So much that it can be a bit overwhelming, but I have to say this is the only site that has made me feel better about my fibroids and surgery to come. This site has really helped me in ways no other site has and I hope I can help others along the way as well.

  23. Fighting Says:

    I just started a blog about my experience with Fibroids in hopes it will help others in a similar situation.

    http://fightingfibroids.blogspot.com/

  24. hgh Says:

    Thank you for clearing some things up, I’ve been confused about this for a while now.


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