What to do about my uterine fibroids....

I am seeking some advice and insights from any of my fellow female kossacks to help me decide what to do about my uterine fibroids....

Come below for more....

For those of you who don't know what Uterine Fibroids are, here is a picture...

I have the Submucosal kind of Fibroid.

Anyway, my doctor has said because the size of my fibroid (I only have one, but it's about orange sized) that I will need to decide if I was to just have the fibroid removed, or have my uterus removed.

Again for those of you who don't know how horrible some of the symptoms of Uterine Fibroids can be, I'll list a few:
-Heavy bleeding that can cause anemia
-a feeling of heaviness or fullness
-back or stomach pain

I should also mention that I am 39 years old and have never had a baby.  I'm not sure if I want to have a baby, but if I have just the fibroid removed, new ones will most likely grow back and I will need to have surgery multiple times to remove the reoccurring fibroids.
But, on the other hand if I have my uterus removed, I will obviously never be able to have a baby if I should change my mind in the future.

I'd also like to mention that I have junk health insurance ( thank you nyceve for teaching me that term) so I have the added burden of how to pay for all this.

Anyway, please share with me below, I will be greatly appreciative.

Peace and love,
angrybird

•  Tips for the joys of being a woman....

  and yes, I am being sarcastic ;-)

  by angrybird on Sun Mar 02, 2008 at 02:54:30 PM PDT

  •  I went with the hysterectomy

    18 years ago, for the same reasons.  Now I only menstruate in nightmares. (Yeah, it got bad enough to feature in nightmares.) I don't regret it, but my experience is old enough that I can't comment on newer treatments.

    Good luck!

    by RunawayRose on Sun Mar 02, 2008 at 03:09:02 PM PDT

    •  Thank you RunawayRose....

      it's a big decision to make, and all the advice really does help me.

      by angrybird on Sun Mar 02, 2008 at 03:12:38 PM PDT

      •  angry, please send me an email . . .

        maybe I can give you a great doctor referral.  Where do you live?

        My email is on my nyceve page.

        by nyceve on Sun Mar 02, 2008 at 03:58:03 PM PDT

        •  I live in Michigan near Grand Rapids....

          I will send you an email also, thank you nyceve.

          by angrybird on Sun Mar 02, 2008 at 05:40:34 PM PDT

•  I've had two friends with this.

  Both of them opted for removal of the uterus after much suffering for years, having fibroids removed only to have more grow back. Both of them wished they had done it sooner.  Best wishes!

  by ggwoman55 on Sun Mar 02, 2008 at 02:59:48 PM PDT

  •  You might look into embolization.

    Sometimes that's the more affordable option, and starving the supply of blood to the fibroids does the trick.

    by Melody Townsel on Sun Mar 02, 2008 at 03:00:57 PM PDT

    •  My doctor....

      said that wouldn't do anything for me.  She said my options were narrowed down to (A) remove the fibroid, or (B) remove the uterus.
      I can't seem to decide which to do...I keep going back and forth on my decision.

      by angrybird on Sun Mar 02, 2008 at 03:07:23 PM PDT

      •  See below

        To a man (and even one woman), five of my six gynecologists in the past five years got visibly angry when I suggested any procedure that involved a radiologist.  That's because radiology is cutting into their hysterectomy racket with less invasive treatments.  And MRI gives a more accurate diagnosis for fibroids than ultrasound, which is a huge cash cow for ob-gyn practices.

        My sixth gynecologist worked in tandem with my radiologist when I had my MRgFUS procedure.  A breath of fresh air.

        by loretta on Sun Mar 02, 2008 at 03:22:23 PM PDT

        •  MRgFUS ?? n/t

          by leckavrea on Sun Mar 02, 2008 at 03:49:51 PM PDT

          •  See below

            MRI-guided focused ultrasound

            by loretta on Sun Mar 02, 2008 at 03:51:36 PM PDT

      •  I agree with Loretta

        A friend had a Mylomectomy(?) only because she searched for a dr who would do it and she ended up in another city for the treatment.  Her Dr. only offered a hysterectomy and told her she was a kook not to get one. She didn't want the hysterectomy and was able to go anywhere because she had not opted to go with an HMO when they were pushing everyone to do it.  She did not have a reoccurance and went through menopause easily. Bottom line is she did the research and interviewed several Drs to find who she was most comfortable with.  Her experience really opened my eyes to what you can do in regards to your health.  

        by tobendaro on Sun Mar 02, 2008 at 04:13:35 PM PDT

  •  My mother had a hysterectomy last month

    after being diagnosed with endometrial cancer. She had a history of fibroids, etc and also wishes she did it years ago.

    The cancer was fully removed, luckily.

    by ablington on Sun Mar 02, 2008 at 03:04:34 PM PDT

    •  Thank you for sharing ablington....

      and I'm glad to hear that your mother is doing well. :-)

      by angrybird on Sun Mar 02, 2008 at 03:08:52 PM PDT

    •  Glad your mom is okay.

      by Elise on Sun Mar 02, 2008 at 03:20:43 PM PDT

  •  Thank you for sharing ggwoman55 :-)

    by angrybird on Sun Mar 02, 2008 at 03:05:30 PM PDT

    •  Welcome hon.

      I can understand your indecision, not having had a child yet. If you want a child, have the fibroid removed and get pregnant right away, then have your uterus taken out during a c section delivery. Just a thought, as it usually takes some time for the fibroids to grow again.

      by ggwoman55 on Sun Mar 02, 2008 at 03:16:53 PM PDT

•  Hugs to you angrybird

  I don't know what to suggest, but I am thinking good thoughts for you as you make your decision.

  by sheddhead on Sun Mar 02, 2008 at 03:02:13 PM PDT

  •  (((HUGS))) back to you sheddhead.....

    I'm sure all the advice and wisdom I get from all you today in this diary will help me to decice what to do. :-)

    by angrybird on Sun Mar 02, 2008 at 03:10:14 PM PDT

•  I would have the uterus removed

  unless I was SURE I wanted to attempt a baby, and if youre sure, you better get crackin'.

  by ablington on Sun Mar 02, 2008 at 03:03:10 PM PDT

•  At the age of 28 I had a large{grapefruit sized}

  pedunculated fibroid removed from the outside of my Uterus.  I was told then to expect more.  But I am past menopause and never grew another one. Its up to you to decide but just remember that not every one goes on to grow new ones.  But that back pain is wearing, to say the least.

  by Owllwoman on Sun Mar 02, 2008 at 03:05:52 PM PDT

  •  Thank you Owllwoman...

    I think I am leaning towards just having the fibroid removed and not the whole uterus.

    by angrybird on Sun Mar 02, 2008 at 03:14:16 PM PDT

    •  I too thought I would want more children

      but I didn't. But the Doc's encourged me to go the route of removal.  I am glad I didn't because then the choice of children was my own. But that was just me. But I feel for you because those cramps and back pain came quickly to mind as I read this. Good luck.

      by Owllwoman on Sun Mar 02, 2008 at 03:25:25 PM PDT

    •  bird, i've had two myomectomies

      major surgery, but worth it, I think all the organs were intended to hold everything together.

      One doctor (a male) said the only time you must have a hysterectomy is if you have a diagnosis of cancer.

      by nyceve on Sun Mar 02, 2008 at 04:00:26 PM PDT

    •  Pregnancy and Menopause

      They both cut off blood supply to the fibroids.  I had a titled uterous, fibroids and ended up pregnant at 45.  No problems since giving birth and entering menopause.  

      by chigh on Sun Mar 02, 2008 at 06:36:32 PM PDT

•  Egads

  I can relate... I've had "issues" since I was 18. At one point, it was suspected to be fibroids.

  I know how painful this is, and I hope it all goes well for you. It is not an easy decision to make at all.

  by BoiseBlue on Sun Mar 02, 2008 at 03:07:10 PM PDT

  •  Thank you BoiseBlue...the support means alot.

    by angrybird on Sun Mar 02, 2008 at 03:14:55 PM PDT

•  Can they put the uterus back in?

  That's the question I'd be asking if it were my body. The fact that you have any question at all means you MIGHT want to have a baby, and to quote the song: "It seems to me that maybe pretty much always means no..."

  With ONE choice, you can always do the other choice later, and as you can imagine a parent would say, the extra pain you might endure for a year or two is NOTHING compared to the pain you will definietely endure for the rest of your life if you DO have kids...I'm not sure I'm helping. I'll shut up now...

  by PBJ Diddy on Sun Mar 02, 2008 at 03:10:12 PM PDT

  •  Thank you and yes, you are helping....

    the more insights the better. :-)

    by angrybird on Sun Mar 02, 2008 at 03:16:03 PM PDT

  •  There is also the possibility

    of adopting, and there sure are a lot of kids out there who could use a good mom.

    That said, given what I've read above, sounds like getting another opinion or two might be in order, since there are treatments other than the two choices your doctor gave you.

    Much sympathy to you. I've had fibroids come and go. Right now I am dealing with an enlarged uterus & endometrium (hooray for menopause) that makes having sex painful (cervix out of place, etc.). Progesterone therapy hasn't done any good thus far. But I'm done having kids, and if my ob-gyn suggests a hysterectomy, at the moment I'm inclined to take that route.

    Who thought up this goofy reproductive system?!!

    by mofembot on Sun Mar 02, 2008 at 04:48:52 PM PDT

•  If you have your uterus removed

  Ask if it will mean possible hormone replacement therapy, which is now being investigated as a possible cause for some breast cancers.  Also, if you are a White or Asian woman, osteoporosis is a condition that affects women of these racial groups more than others, so it is important to stave off menopause, whether natural or surgically induced.  

  I would further investigate embolization, as suggested by Melody Townsel, as well as laser removal of the fibroids, which can minimize bleeding.  As you may know, if convention surgery is used and the bleeding becomes uncontrollable, a total hysterectomy could be performed.

  by Sagittarius on Sun Mar 02, 2008 at 03:11:12 PM PDT

  •  It's my understanding that

    hormone replacement is necessary only if the ovaries are removed as well. Is there any reason in angrybird's case to take them out? (I have no idea what constitutes "standard practice" in the U.S. these days.)

    by mofembot on Sun Mar 02, 2008 at 04:52:10 PM PDT

•  Have you gotten a

  second opinion?  While I think this is a great community for advice, I would hope that you would rely on the opinion of medical doctors who understand your specific circumstances.  Sorry, but it scares me when people ask for medical advice on the intertoobz.

  by gchaucer2 on Sun Mar 02, 2008 at 03:14:09 PM PDT

  •  Yes...

    I have gotten a second opinion.  This was the second doctor I talked with actually.  
    I think I am just seeking stories from others who have been through all this before.

    by angrybird on Sun Mar 02, 2008 at 03:18:25 PM PDT

    •  Ok, good

      Please, don't just take advice from folks here, although it is good to have a support group.  I wish you good luck, angrybird, and good health.

      by gchaucer2 on Sun Mar 02, 2008 at 04:01:17 PM PDT

•  Did your doctor also rule out focused ultrasonic

  surgery?  Although long-term benefits are not yet known, it appears to be effective in the short term for treatment of symptoms, maybe giving you time to then attempt pregnancy.  That way, if the fibroid recurred or a new one formed, you could then have the hysterectomy.  Just a thought.  

  Here is a link that explains about this therapy.

  I assume that you have already tried hormonal therapy or that there is a reason why your doctor has ruled that out as well.  

  I hope that things get better for you.  Good luck to you.

  by docangel on Sun Mar 02, 2008 at 03:15:21 PM PDT

•  Have the fibroid removed

  Fibroids usually begin to shrink in peri-menopause.  I've had fibroids for many years, but was able to have a baby. The fibroids shrunk when I was in my forties and are not a problem anymore.  I would not worry about new fibroids given your age. I think it's better physically to go through natural menopause, than surgical menopause, so if you have a choice, just remove the fibroid. If you have surgical menopause, you will have to take estrogen and there are risks associated with it.  

  by ann stone on Sun Mar 02, 2008 at 03:15:53 PM PDT

  •  Thank you ann stone...

    I think I agree with you.  I am leaning towards just having the fibroid removed, and as for having a baby it's only a maybe in the futute because my marriage is ending now and I am going to be newly single....scary thought ;-)

    by angrybird on Sun Mar 02, 2008 at 03:22:32 PM PDT

    •  Sorry that you're having to go through

      so much all at once. Bon courage, angrybird.

      by mofembot on Sun Mar 02, 2008 at 04:53:26 PM PDT

•  More hugs for you

  angrybird, what a terrible situation this is. I haven't faced this problem myself, so I can't offer any wise advice about the choices.

  I do send hugs and best wishes as you walk down this path and make your decision.

  One thought I'd like to share, though--and remember it comes from someone who hasn't been in your shoes, so this is definitely a FWIW situation.

  Joel Fuhrman, who is a doctor whose practice has focused mostly on nutrition for some years, thinks that a great many health problems could be improved with what he calls nutritional excellence. That means: lots and lots of nutrient dense foods (fruits, veggies, legumes, whole grains) and very modest amounts of foods which are not nutrient dense (like meat, dairy, sugar, refined grains, etc.).

  He says this on his website:

  Uterine fibroids (or tumors) also develop from a diet deficient in fruits and vegetables and heavy in cheese and meat. As the consumption of meat increases and vegetation decreases, one’s risk of fibroids increases proportionately.

  I had different health issues from yours, but I've been following his recommendations and got better.

  I don't know if his suggestions will be of help to you. One good thing about changes in nutrition, though, is that it shouldn't interfere with the medical care you're getting. It isn't an "either-or" situation.

  Fuhrman has written books, which may be in your public library, if you are interested: Eat to Live and Disease Proof Your Child.

  Good luck, angrybird.

  by True North on Sun Mar 02, 2008 at 03:16:03 PM PDT

  •  Thank you very much True North....

    you gave me some interesting things to think about; it's greatly appreciated.

    by angrybird on Sun Mar 02, 2008 at 03:24:19 PM PDT

•  angrybird

  Hysterectomy is major surgery, and once you do it, there's no going back. Even if you decide to go ahead with it, you need to ask your doctor whether he would also remove your ovaries.  Some doctors recommend it, even if you have no history of problems with the ovaries themselves, "just to avoid trouble."

  Of course, if you have your ovaries removed, you will go through instantaneous and complete menopause, at an early age. You also lose the ability to have a biological child by means of a surrogate.

  I don't have the sort of fibroids you do, but I have a related condition, adenomyosis, in which endometrial tissue grows into the uterus.  When it was diagnosed (after similar but less severe symptoms of profuse menstrual bleeding and bad cramps), I was in my late 40s, already had two children and had no intention of having any more.  Yet when my doctor (a man, of course) suggested hysterectomy (including ovary removal) on the grounds that "you don't need them anymore," I suddenly realized that I wasn't ready to give up my reproductive organs even though I wasn't planning to use them again.  I also wasn't ready to go into menopause.  (Indeed, six years later, I still haven't gone through menopause.)

  Granted, I don't my symptoms are as bad as yours, but I would think really carefully about going ahead with a hysterectomy without trying one fibroid removal first.  You may never get another one.  And if you do decide to have a hysterectomy, see if you can preserve your hormones by keeping your ovaries.

  Good luck,

  litigatormom

  by litigatormom on Sun Mar 02, 2008 at 03:16:23 PM PDT

  •  Thank you litigatormom.....

    and I have purposely only seen woman doctors about my problem because of what you mentioned in your comment.  
    Thank you for sharing. :-)

    by angrybird on Sun Mar 02, 2008 at 03:26:30 PM PDT

  •  I think the new way of hysterectomy is NOT to

    remove the ovaries unless there are other mitigating circumstances.  Natural menopause is much better than a forced menopause with fake hormones. Another friend who had a complete hysterctomy (40 years ago now) while in her twenties took hormones and ended up with cancer of the breast in her fifties.

    Those hormones are bad news it seems to me, but then I was never took birthcontrol pills because they caused me probs.

    I like the ref to eating more fruits and vegies and less cheese and meat. Damn hormones in meat and dairy now too!

    by ggwoman55 on Sun Mar 02, 2008 at 03:42:20 PM PDT

•  Look into MRgFUS

  MRI guided focused ultrasound is new, and your junk insurance isn't going to cover it, but it's a nearly painless outpatient procedure and you'll be back to work within 48 hours.

  I had MRgFUS and it didn't completely erase my symptoms, but my fibroids were very advanced (15 week pregancy size).  For smaller ones, in my opinion it's a valid alternative to the overkill of hysterectomy.  And I've been hearing some bad things about embolization (UAE--sepsis, or pain lasting 2+ weeks after the procedure, although the majority of women report being happy with it.

  Myomectomy is surgical removal of the fibroid and has a similar risk rate and cost as hysterectomy.  If you go with hysterectomy, look into minimally invasive such as laparascopic supracervical, and do not let them take your ovaries unless cancer is actually present--at 39 you'll be on hormone replacement therapy for a scary long time if you let them do an oopherectomy along with the hyst.  And, if I may be frank--if you have G-spot orgasms during sex, you need to evaluate hysterectomy VERY carefully and choose the procedure that takes as little tissue as possible--don't let anyone sell you on a vaginal hyst, as the "cuff" it creates after they take your cervix takes away the G-spot pocket.

  Get rid of your junk insurance ASAP.  In my state, Blue Cross has to take everybody, with a 6 month waiting period for pre-existing.  Since fibroids aren't life threatening, it might be worth riding out the six month waiting period if the law is the same in your state as mine.  My Blue Cross HMO paid for all but $25.00 of the $11,500 MRgFUS procedure.

  Ultimately it's your body and your decision.  Most gynecologists hate radiology because it competes with their surgical practice.  In the future, I'm getting my gyno referrals from a radiologist so I know the two of them will work together.

  Here's a great blog on fibroids that I used heavily in making my medical choices:  Geek With Fibroids.

  Good luck--this is a common problem, and there's no research that it leads to cancer any more than a normal uterus, so don't be afraid to investigate all of your options.

  by loretta on Sun Mar 02, 2008 at 03:17:20 PM PDT

  •  I think that orgasm stuff is nonsense

    I see thousands of patients who have had hysterectomies and ask them every year if they miss their uterus and they overwhelmingly say no.  They have orgasms just fine and for the most part feel their sexuality has been improved by hysterectomy.  Just where do you think the "G spot" is anyway?  

    by fayea on Sun Mar 02, 2008 at 04:41:58 PM PDT

    •  I'll tell you where mine is

      Actually my current gynecologist (who hates radiology, ripped profusely on MRgFUS and UFE, and refused to admit that MRI can give a differential diagnosis between fibroids and adenomyosis) was very sympathetic to my reluctance to go with a hyst because I'm afraid it will affect my G-spot orgasms.  He called it "cervical knock" and said about 10 percent of women experience orgasms based in the cervix and uterus.  "I'm one of them," I replied.

      The guy's bedside manner is the worst I've EVER seen in a doctor, but he's a crackerjack surgeon and I might need him.  At least I won't have to talk to him if I'm under anesthesia.

      Fayea, you put up a really good post down below, and I mojo'd you for it.  But it's extremely presumptuous of you to say "the G-spot is nonsense" because studies show there are no nerve endings in the cervix.  What I've read is that the G-spot nerve endings are associated with the trigone area between the bladder and the vagina.  There's even a peer reviewed article that at least raises a possibility worth investigating more:

      Results. The urethrovaginal space and distal, middle, and proximal urethrovaginal segments were thinner in women without vaginal orgasm. A direct correlation between the presence of vaginal orgasm and the thickness of urethrovaginal space was found. Women with a thicker urethrovaginal space were more likely to experience vaginal orgasm (r = 0.884; P = 0.015). A direct and significant correlation between the thickness of each urethrovaginal segment and the presence of vaginal orgasm was found, with the best correlation observed for the distal segment (r = 0.863; P < 0.0001). Interobserver agreement between the designated evaluators was excellent (r = 0.87; P <0.001). </p>

      For me the sensation starts with a feeling much like I have to pee, then grows as the "pocket" between the trigone and my cervix expands and the head of my boyfriend's dick can fit into it and massage it until I explode.  I have clitoral orgasms too, but nothing compares to this. Would you tell me my experience is "nonsense" because you've never experienced it yourself?

      Also, I noticed you didn't mention lap supracervical hysterectomy as one of angrybird's options.

      Sorry to be so graphic, but well, you asked.  I'm also sorry to be so standoffish, because I think it's very generous of you to step into this conversation and give your professional opinion.  But "nonsense" when applied to a woman's subjective experience is a pretty strong word.  I would not have you as my physician.

      by loretta on Sun Mar 02, 2008 at 05:30:16 PM PDT

      •  i didn't mean to offend

        by saying nonsense.  It's just that so many male physicians and researchers have tried to categorize women's orgasms since Freud started it.  The G spot has never been agreed upon as to where it is.  Perhaps it's different for different women.  But, please know that in a vaginal hysterectomy, the area of the vaginal wall that is directly underneath the trigone of the bladder is not removed or damaged in any way.  What I think, more from my own experience supplemented with my education about anatomy and physiology about the cervix as it relates to sexual feeling and orgasm is that it really is the stretching inward when his penis penetrates to that point that causes alternating pressure on the erectile tissue in which is located in a  ring all  the way around the vaginal opening in the labia.  My hysterectomized patients say this does not change for them without a cervix because the penis just hits the apex of the vagina again pulling on the vulva and causing the same intermittent compression.  I hope I am describing this well enough.  Everyone's experience of their sexuality is valid.  I just don't want women to think they will be rendered eunuchs by having a hysterectomoy.  Mostly they do just fine and enjoy sex quite well.  I do talk to my patients about this aspect both before and after hyst and as they go thru changes of life for any reason.  It's a poorly researched and understood area of our lives, but tremendously important.  

        by fayea on Sun Mar 02, 2008 at 06:15:55 PM PDT

        •  OK, and

          I knew I was overreacting to you even as I was writing it.  I get very emotional about sex--which is a good thing, mostly.

          I've read all the stuff about there being no nerve endings in the inner two-thirds of the vagina, including the cervix, and I don't dispute that. I also know that the theory that all orgasms are clitoral has freed women from the outmoded Freudian theory that real women had vaginal orgasms and all others were immature.  Still, I've compared notes with my woman friends, and the contrast is obvious once they start to open up about it.  Or consider Carla's journal from Sex, Lies and Uterine Fibroids after her UAE:

          Libido still high. Some improvement in "feelings." Clitoral orgasms return but require significant effort to achieve. Uterine orgasms nonexistent. "Dead weight" in the abdomen. Also have noticed complete "disconnect" from stimulation of the nipples to any sexual feelings whatsoever. Pre-UAE, stimulation of nipples resulted in uterine contractions that contributed to overall sexual pleasure and uterine orgasm. Some general depression re: this topic. No longer discuss with too much detail with spouse. He wants to "understand" -- but still believes there is something he can "do" that will improve my "feelings" in this area. He intellectually "gets it" but subconsciously doesn't accept it. On a scale of 1-10, clitoral orgasm ranks a "2" with me. Somehow, I convince my husband that "2" times 5 equals 10 and he's satisfied that he can "satisfy" me with quantity if not quality of orgasm. I am definitely not suffering from lack of intimacy these days.

          I also think a lot of women are happier after hysterectomy simply because they can have sex again, without bleeding three weeks out of every month or feeling pain every time they try to make love.  Even for those of us who experience cervical knock, or g-spot, or whatever, what's the point of being anatomically blessed if we can't enjoy it because we're sick all the time?

          My issue with vaginal hysts is that, as you say, there's a lot we don't know about women's sexual anatomy.  I know they're popular because of the reduced recovery time and risk of abcess and adhesions compared with an abdominal incision.  But the choice of whether to do a vaginal hyst or a supracervical hyst seems to depend mostly on what the surgeon is most skilled in.  It shouldn't be that way.

          For myself, if I can have a lap supracervical hyst and keep my cervix (provided there's no dysplasia and I don't mind getting annual pap smears), I have maximum assurance that my sexual functioning will be the same afterward as before.

          It seems to me that the best scientists are the ones who can say, "My preferred theory/procedure is X, but there are other scientists who prefer Y.  I don't agree with them, but I encourage you to explore Y before agreeing to X."  The reason I get so angry with doctors is because so many of them don't even mention Y, so I have to go find out about it on my own.  I've gotten quite good at it, but in the process I've also gotten cynical.

          Again, thank you for lending your professional expertise to this discussion.

          by loretta on Sun Mar 02, 2008 at 06:59:34 PM PDT

          •  thanks for forgiving my sloppiness

            it's a lot harder to perceive how my words are coming out on the other end when there is no eye contact.
            There was a guy in our town who started doing a  lot of supracervical hysterectomies.  He was a good surgeon (I  worked with him in the OR many times).  I am less a fan of supracervicals than before since most of his patients are now coming to me - with problems.  A few dysplasias in women who never had them before and a few with monthly periods - bleeding from a little bit of endometrium accidentally left behind.  There is no clear line of demarcation between the cervix and the rest of the uterus - so this can happen.  Trying to remove the cervix after hyst is more difficult because who knows what has stuck to it inside the abdominal cavity. I personally, would not have a supracervical.  But, then I have been lucky and haven't needed any hysterectomy.  I do give my patients all the options I can think of.  Since I am in a small town, some of those options require travel.  The odd thing is I spend most of my time trying to talk women out of hysterectomy when they really don't need one but could do fine with endometrial ablation or a Mirena IUD for heavy bleeding that is not related to fibroids.  

            by fayea on Mon Mar 03, 2008 at 06:28:54 AM PDT

•  How about endometrial ablation?

  outpatient surgery and supposed to be highly effective.

  by HairOnFire on Sun Mar 02, 2008 at 03:19:51 PM PDT

  •  balloon ablation

    is maybe the one I'm thinking about.

    by HairOnFire on Sun Mar 02, 2008 at 03:22:32 PM PDT

    •  I'm not a doctor

      but I did a ton of research on the subject when I made my medical decisions.  What I read told me that ablation is ineffective if the penetration of the fibroid into the uterine wall is more than 2cm.  For women with dysfunctional uterine bleeding absent fibroids, the ablation got rave reviews.

      But that's a decision for angrybird and her doc.

      by loretta on Sun Mar 02, 2008 at 03:26:14 PM PDT

      •  Ablation is great for heavy bleeding

        but not a good solution for fibroids. I opted for that choice, knowing I had a small fibroid that was not the major cause of my problems and that the solution was not a 100% guarantee. It was a huge help and has bought me time that may or may not allow me to make it to menopause without a hysterectomy or other major procedure.

        Cost is certainly another consideration. You may want to find a stopgap measure and see if you can put off a hysterectomy until you have better insurance.  I am not in your shoes and don't how much all of this is affecting you daily though!

        Best of luck to you!

        by fahrenheit2200 on Sun Mar 02, 2008 at 03:52:01 PM PDT

  •  it only works for certain

    women.  It basically scalds the uterine lining and a smidgeon of the uterine wall supporting it.  If the fibroid is deeper, it probably won't help.  It does work great for other causes of heavy periods tho.

    by fayea on Sun Mar 02, 2008 at 04:43:56 PM PDT

•  My mom had fibroids...

  she ended up having a hysterectomy. Of course, that was after she'd had 5 kids - and she was older than you are now - so there's that to consider.

  I'd follow up on looking into some of these other options if it were me...

  This is a big decision you've got. I wish you luck with whatever you decide...and I hope everything works out best.

  by Elise on Sun Mar 02, 2008 at 03:24:42 PM PDT

  •  Thank you Elise....

    I am planning on asking more questions.  I will keep everyone posted to what I will be doing.  

    by angrybird on Sun Mar 02, 2008 at 03:31:01 PM PDT

•  Asking anonymous people on the internet

  for medical advice seems an unwise thing to do.

  by arielle on Sun Mar 02, 2008 at 03:26:53 PM PDT

  •  I disagree

    with the caveat that the final decision is up to angrybird and the doctor she feels most comfortable with.

    When I finally decided to seek treatment for my problems, I was amazed that there was no single place to go for information on treatment.  So many doctors had competing strategies, and they were either negative on the ones they didn't do, or refused to mention them at all.

    I gained so much from reading personal stories by other women who had experienced what I was going through.  It was actually comforting when they contradicted each other, because it proved that there's no one-size-fits-all treatment for this condition.  There's so much that medical science doesn't know about it--it's not life-threatening, so it doesn't get the resarch priority that cancer gets.  And in the past, women were so meek and/or afraid of cancer that when the gyno said you need surgery, we just said yes.

    Information--even in the form of first-person anecdote--is power.

    by loretta on Sun Mar 02, 2008 at 03:32:52 PM PDT

    •  Edit

      I disagree with you--but with the caveat that the final decision is up to angrybird and her doc.

      by loretta on Sun Mar 02, 2008 at 03:35:01 PM PDT

    •  Fair enough.

      I'm not much of a trusting sort.  :(

      I would tend toward a bulleting board specific to this medical issue, maybe, or a local support group.

      But goodness knows there are a lot of women who have had this so there are probably a fair few here.

      by arielle on Sun Mar 02, 2008 at 03:47:35 PM PDT

•  I too have fibroids

  My doctor has mapped 8 - all growing, despite my being peri-menopausal (so much for that theory).  I also have advanced endometriosis, and IBS - adding to the pain (which is quite severe).  Unfortunately, I am not a good candidate for surgery, for a number of reasons (including I tend to wake up from anesthesia in the middle of everything).  Were it an easy choice - I'd opt for hysterectomy - but it's not, so, like you, I am at a loss.  Good luck, honey.  I hope whatever decision you make, it eliminates the problem.  

  by The Fat Lady Sings on Sun Mar 02, 2008 at 03:27:12 PM PDT

  •  Thank you for the comment....

    I am starting to see from all the comments that my situation isn't as bad as I thought compared to others.  
    I hope things improve for you The Fat Lady Sings.
    (((HUGS)))

    by angrybird on Sun Mar 02, 2008 at 03:47:45 PM PDT

    •  As with one of your earlier commenter’s -

      I believe diet is a component.  I've decided to be my own doctor - so I'm reading up on all this.  There is suspicion that endometriosis is exacerbated by dairy adulterated with artificial hormones.  Thus, I have shifted my diet.  I now only eat organic yogurt and cheese.  Expensive, and a bitch to find where I live - but if it works, I'll be better off.

      I'm also going to try eliminating many meats (I now only eat chicken and fish).  I may not go totally vegetarian (I really like fish) - but if it will slow the growth of the fibroids - I'm all for it.  As it is now, I take daily pain meds just to function.  I hate that.  I want to manage it on my own.    

      I hope you get good medical advice, honey.  I'll keep you in my prayers.  Women's health is not a priority these days.  We are often left to deal with problems on our own.  Please know that we all stand in sisterhood with you.  It may not solve the problem - but you do not suffer alone.

      by The Fat Lady Sings on Sun Mar 02, 2008 at 04:45:41 PM PDT

•  Complete hysterectomy 14 yrs ago due to fibroids

  Have you had a fertility discussion with your doctor?  Just an fyi...one of my children is adopted--he was a toddler (not an infant) when we brought him to our home.  He is a wonderful young adult and a great source of joy to me.  

  There continue to be many children in the world who need someone to lovingly parent them--not a lot of white infants but many children.

  Point is there are options for us when we slightly adjust our expectations.  Good luck, sweetie.

  ps:  Symptoms disappeared completely after surgery and I felt 15 years younger!  It really does make you better.

  by St Louis Woman on Sun Mar 02, 2008 at 03:27:19 PM PDT

  •  Thank you St Louis Woman....

    I appreciate the wisdom from experience. :-)

    by angrybird on Sun Mar 02, 2008 at 03:37:51 PM PDT

•  Hi angrybird

  I've got them too, and due to other health reasons, they won't recommend a hysterectomy. So I'm trying to get through menopause, and the damn things have started to shrink as the process goes on.

  I feel for you, much sympathy here -- it's been painful for ages, and is only now (knock on wood) starting to come to an end. If they had offered to just remove the fibroids, I would have gone with that, but I've got 4 or 5, and they never offered anything but a complete removal. Keep what you got if you can, it serves some purpose most likely (hormones, etc.) Some folks seem really happy to get rid of everything, others I know don't recommend it as they don't feel right, and have had problems since the surgery. So it's a really hard choice.

  by jancw on Sun Mar 02, 2008 at 03:29:59 PM PDT

  •  Thank you for sharing jancw....

    I'm glad to hear from someone in the same boat.  I am planning on doing more research and asking more questions, but hearing from everyone here on this site helps too.

    by angrybird on Sun Mar 02, 2008 at 03:36:02 PM PDT

•  My Aunt Had Fibroids And Bleeding Too. In The

  End she ended up removing her uterus, but she already had a daughter and was not looking to have any more children so it was kinda like the easiest choice.

  It sometimes comes to a life death decision, in my aunt case she was in such bad shape the doctor told her, another week and you probably would not have made it all the way, she was very weak and really loosing lots of blood.

  I am happy to report that after 5 years she is in great health, even lost weight ;-) so there is light at the end of the tunnel.

  Good luck on your decision.

  by DFutureIsNow on Sun Mar 02, 2008 at 03:30:32 PM PDT

•  Chinese Medicine has several treatment options

  for your condition. All you need to do is research local practitioners, find one you like and go get some help.

  by gregoryjames on Sun Mar 02, 2008 at 03:31:48 PM PDT

•  I have 3

  I am your age and will turn 40 next month. I am also pregnant with twins and was grateful that the fibroids had not grown to a point to obstruct pregnancy.

  However since being pregnant the fibroids have not only increased in size but are even more painful than prior to pregnancy. Apparently, the increase in hormones can make the fibroids even worse. I am on 'watch', as my doctor put it.

  Because you are unsure of whether to have kids (as I was a few months ago),  I would seek additional opinions from other doctors in the field. At the same time, try to come to some concreteness around having kids or not. You do have time in terms of maternal age, it just depends on what the fibroid does from here until that point.

  Hope this helps some.

  by brown girl in the ring on Sun Mar 02, 2008 at 03:36:51 PM PDT

  •  Thank you so much....

    and I'm sorry to hear that you're still having even worse pain while pregnant, and all the complications too.
    Was it not recommended to have your fibroids removed before you got pregnant?  I'm just curious because my doctor seems to think removing them first is best.
    (((HUGS))) to you and your baby and I hope things go well for you both.

    by angrybird on Sun Mar 02, 2008 at 03:42:21 PM PDT

    •  Interestingly enough

      No it wasn't recommended at all. I actually had to push the issue with my now previous OBGYN (for obvious reasons - which I won't go into here) to do regular ultrasounds to determine type and size.  First there was one, than 3. All growing at a pretty rapid pace.

      I mention this only because if you were to become pregnant with the fibroid at that size and position, you may have complications. On the other hand, I would also be concerned about the effects of surgery on the uterine wall.

      by brown girl in the ring on Sun Mar 02, 2008 at 03:47:53 PM PDT

  •  Painful Fibroids

    I think it is because the blood supply to the fibroid is cut off during pregnancy and the pain is from shrinking.  I was put on a mild drug used in infants to help with the pain.

    by chigh on Sun Mar 02, 2008 at 06:50:37 PM PDT

•  I've had lots of surgeries

  and at your age I'd have to side with the don't have a hysterectomy yet crowd.  If the problems continue you can always make the decision then.  And I am not a doctor either but I understand your need to ask others their opinions, it is a big decision and not one to rush into.  I hope all works out well for you, best wishes!

  by Patricia Bruner on Sun Mar 02, 2008 at 03:37:02 PM PDT

•  my friend has had major problems with this

  she's been rushed to the ER 4 times because of severe blood loss. last time was in Nov and she ended up with a full blood replacement. they cannot perform a hysterectomy when this happens. she's had some problems with her insurance getting one in between these episodes . . .  she now has a doctor that is working with her so she can get the surgery before she almost bleeds to death again. she already has them growing back again.

  when she was first diagnosed, she was turned down for a hysterectomy by insurance because it was selective . . . this was at least 5 yrs ago. before that, they just kept telling her it was pre-menopause and giving her hormones. that was about 2 yrs worth. she was about your age when she was diagnosed and knew she didn't want children.

  i'm not sure if it's getting more aggressive, or if it's because she finally has a doctor demanding ultra sounds, but the fact they are growing back this quick is scary to me.

  i should mention, this runs in her family.  anyway. not trying to scare you, just wanted to let you know what has happened with my friend. oh, 2 of the times the paramedics have taken her to a certain hospital because of her problem and the staff there.

  by nycstray on Sun Mar 02, 2008 at 03:39:48 PM PDT

  •  Wow!

    What your friend went though is horrible!  I don't have bleeding that severe...knock on wood...but I do have some other symptoms that aren't fun.  
    Thank you for the comment nycstray.

    by angrybird on Sun Mar 02, 2008 at 03:45:36 PM PDT

    •  they were rupturing or detaching

      she would bleed heavy anyway, but not enough to be a problem (aside from feeling like crap)

      this last time, she tried to get into a specialist because she knew what was happening. no one would take her right away. should would have had to wait until the new year (insurance issue again). she was in the hospital 2-3 days before they could deal with the situation. they needed to get enough blood in her and get her strength up.

      the doctor that patched her up this last time took her on as a patient and is aggressive in gettting this dealt with. she goes back in this month and will more than likely get scheduled for the surgery.

      one of the things that really pisses me off is the insurance companies. i know what type of insurance she has because we have both worked for the same companies. it's supposedly 'good' insurance. of course like most insurance it's costing more and supplying less. she's paying a hell of a lot monthly and getting tossed aside in return.

      by nycstray on Sun Mar 02, 2008 at 04:01:55 PM PDT

•  I'm so glad you posted this

  Good information is hard to find and the experience of others is really helpful.

  So if you haven't already done so, go to the homepage of NUFF, the National Uterine Fibroids Foundation.  This is an incredible group of people who have all been through this and have a lot of knowledge.  There's a great online support group and terrific resources.  Fibroids are very common -- probably the majority of us who have uteruses have them; fortunately they're not troublesome for many people. They are somewhat more common among African American women but no one is immune.  It's a very under-researched field, like so much of women's health.  

  There is no one-size-fits-all perfect solution. So I can't tell you what to do, but I can suggest some things to think about.

  1.  As I'm sure you know, although if you're like me you might not want to think about it, at 39, your chances of getting pregnant without fertility treatment are not great, even without the fibroid.  But, if maintaining your fertility is important to you, you should definitely go for a myomectomy (having just the fibroid removed).  So, you need to take some time to figure out what's most important.  

  2.  Although everyone's different, from what I've heard, most people's fibroids don't grow back all that quickly.  You might well only have to have this one taken out once.  

  3.  Whether you want to get pregnant or not, you should not have your uterus removed without thinking about this very very carefully and getting a lot of advice and opinion.  While you can live well without a uterus and many women do, it is best to hold on to it even after menopause if you possibly can.  There are a lot of implications to hysterectomy other than not having periods any more; it can affect your sexual and urinary functioning and may have effects on other body systems. The folks at NUFF will tell you more.  

  4.  There are options other than surgery; hormone therapy, embolization, ablation, and watchful waiting (which is not the same as doing nothing and pretending this will all go away).  If your doc hasn't talked about them, he or she may not be an expert in this field and may not be the best provider for you.

  5.  Until you decide what else to do about your fibroids, you definitely should be getting your hemoglobin checked regularly and you may need iron supplements.  Anemia can sneak up on you and leave you feeling very tired, depressed, and fuzzy-minded, which just makes it harder to make good decisions and cope with the situation.

  6.  If after some consideration you do decide to go with a hysterectomy, there are still a lot of variables to consider.  Unless you have a strong family history of ovarian cancer or are otherwise at high risk, you probably don't want to have your ovaries removed, and you may not want to have all of the uterus removed either.  

  7.  Insurance companies may want to push you towards hysterectomy because they regard it as a permanent solution -- which it is to some of the problems, but it may create a bunch of others. So, you want to have a doctor who will be a good advocate for you with the insurance company, no matter what you decide.  Again, I think NUFF can be of help in finding providers who are experienced in the options.  

  8.  You didn't mention this, but just in case someone else has this question, there is virtually no chance of uterine fibroids becoming cancerous.  If you find a doctor who tries to scare you with that possibility, run away.

  I chose the watchful waiting route and was able to hang on until I hit menopause.  This was the right decision for me, but yours may be different.  Good luck!

  by Eloise on Sun Mar 02, 2008 at 03:46:00 PM PDT

  •  Thank you so much Eloise...

    You gave me alot of insights, it's greatly appreciated.

    by angrybird on Sun Mar 02, 2008 at 03:51:09 PM PDT

    •  Wow, when I started composing my long reply

      there were only 4 or 5 comments!  So I guess I really didn't need to say that this is a pretty common problem....we proved it!

      Oh, another good book (on fibroids and other conditions) is A Gynecologist's Second Opinion.

      by Eloise on Sun Mar 02, 2008 at 03:59:02 PM PDT

•  Recent Experience

  My partner just had (i.e., 10 days ago) her uterus removed because of a very large fibroid.  She is almost 50, so kids wasn't a factor in her decision.  

  I think that if there is any uncertainty about kids, you should really consider the alternatives because it is something that you could really come to regret.  You could try to find an alternative that won't leave you sterile.  In the worst case, if the fibroids come back, you can always reconsider and solve the problem for good (i.e., have the hysterectomy).

  Another thing to consider is that the hysterectomy will knock you out for a long period of time.  Part of it is the procedure itself, and part of it is the effect of the anesthetic.   My mother reports that she felt tired for a couple of months after the operation and you will be restricted from lifting heavy items for six to eight weeks (no lifting sacks of groceries).

  Although my partner has basically been in bed for the past 10 days, she does report that her back pain, which has been quite problematic (she hasn't been able to exercise at the gym for a couple of months) seems to have gone away.

  So... since you are young and have several years of fertility left ahead of you ... maybe you should have a good look at the alternatives to hysterectomy. Unfortunately, I don't know anyone who has tried some of these alternatives.

  by Johnny Nucleo on Sun Mar 02, 2008 at 03:46:49 PM PDT

  •  Thank you for sharing Johnny Nucleo....

    and wish your partner a speeding recovery for me.  

    by angrybird on Sun Mar 02, 2008 at 03:52:49 PM PDT

  •  Depends. These days some hysterectomies

    are performed arthroscopically. I have heard, however, that where the uterus is extracted (pelvic floor v. lower abdominal wall) can make a difference for some women re: urinary & other issues. (Siiiiigh.)

    by mofembot on Sun Mar 02, 2008 at 05:00:35 PM PDT

•  A {{{hug}}} for you, angrybird

  I can only offer my sympathies (as someone who has ovarian polyps that I have to keep an eye on) and share my own experience regarding parenthood: I'm 45, and I have never had (or will have) a child. But my life is rich and full in so many ways: I am in my 15th year of a glorious love affair with my husband (who I utterly adore!) and I have found other ways to satisfy my need to nurture and give: I am mommy to my precious rescued dogs and I volunteer with different organizations (including here at DK).

  I don't regret our decision for a moment!  We've enjoyed a wonderful sexy marriage, and we have time and money available to spend on ourselves and various charities that we might not have if we had decided to bring a child into this world. Some people love being parents, and I celebrate them! But life is fulfilling based on what you bring to it, and so for us, it was the right choice to be lovers instead of becoming parents.

  I wish you all the best with this most personal of decisions!

  by joyful on Sun Mar 02, 2008 at 03:48:30 PM PDT

  •  Thank you for sharing Joyful...

    and I envy your marriage!  Mine is currently in the process of ending, but it's all for the best.

    by angrybird on Sun Mar 02, 2008 at 03:54:43 PM PDT

•  DO NOT HAVE YOUR UTERUS REMOVED

  until you have read these two books.  Don't get thrown by the words premenopause or menopause.  There is a wealth of information regarding bioidentical hormone replacement and the reduction of fibroids.

  Please, please read these before you make any decisions and seek out a doctor who is familiar with this information.

  Here

  and here

  There are probably even more books out on the matter, but these are the two I am most familiar with.

  by Ret on Sun Mar 02, 2008 at 03:50:34 PM PDT

  •  Thank you Ret....

    I will read your suggested books.  My doc said there isn't a huge rush to do anything at this point, so I can do a lot of research first.

    by angrybird on Sun Mar 02, 2008 at 03:55:55 PM PDT

    •  This is another one

      you might want to check out.  I haven't read it, but it looks like it's right on target.

      See here

      by Ret on Sun Mar 02, 2008 at 03:59:12 PM PDT

      •  Incidentally,

        I don't know where you live, but the OB/GYN who wrote this book now practices in the Bethesda, Maryland area.

        I happen to know this because he's my OB/GYN!

        by Ret on Sun Mar 02, 2008 at 04:06:07 PM PDT

•  Hysteroscopy?

  With D&C?  A skilled OBGYN/surgeon can do this with little impact, other than the general anesthetic.

  Don't remove a major organ unless you really have to, would be my recommendation.  Hysterectomy as a last resort.

  Best wishes to you with this.

  by sockpuppet on Sun Mar 02, 2008 at 03:52:50 PM PDT