Do you have/have you had uterine fibroids? May be TMI

In My Humble Opinion
1

Well, have you? How about anyone you know? I’ve got them, at least 3 large ones. And they suck. Apparently since they are large, they are causing pressure on my left side, so that my left side, and that lower side of my back and hip also hurt.

So, they are going to have to come out. Somehow. I’m supposedly too young for this to be happening to me. I know there are several types, but I don’t know which ones I have. I had a pelvic ultrasound (ugh, so icky) and got the report. They couldn’t even find my left ovary, I guess the fibroids are in the way.

Also, they found a “benign-appearing” 2 cm cyst on my right ovary. Yippee.

Sheez… sorry if this is TMI, but I’ve got to vent, and wanted to see if anyone had any experiences to share. I have found some info online.

I’ve got a doctor’s appt at a women’s clinic on the 23rd of this month to do…something. I might as well just buy my own pair of custom stirrups, the way this is going.

And I’m not sure whether or not I want kids, but I really don’t want some mutated muscle tissue attached on or in my uterus deciding for me. You know?

If you have any encouragement, that would be great.

With much frustration,
Bethany

2

Sorry to hear about your condition. What prompted you to get checked out? The pain? I haven’t heard of this. Sorry I can’t offer more than this. But maybe your post will help someone out. Good luck!

3

bwk, sorry to hear about the trouble you are experiencing. I have heard of uterine fibroids and there are many good websites on the topic. You should definitely check out the message board at www.obgyn.net. It is one of the most thorough and intelligent websites I have ever come across.

IANAD, but it is my understanding that this should not hinder your ability to conceive. If one ovary is blocked, the other one, if it is healthy will take over production of eggs.

In an encouraging note, and I mean this more than you will know–you should give yourself credit that you have identified the problem and it has a solution. There are many, many women out there who suffer from debilitating pelvic pain and never find out the cause.

Much luck to you.

4

Pepper Mill had fibroids in her uterus. She got them removed, in a Cesarean-type operation. Several years later we had our daughter MilliCal. Just to let you know it can all work out.

5

My mother had a hysterectomy because of the number of fibroids in her uterus. They had to do it abdominally because of the sheer mass - it is normally done vaginally.

My sister had an ovary removed due to fibroid cysts when she was 16. She was able to conceive normally.

Every time I have been for a sonogram, I have asked that they check for fibroids. It is a genetic thing, apparently. My mother is one of six girls and one boy, and each of them have fibroids. My uncle had them on his head, and so did Mom, years ago.

Good luck, hon.

6

I had had some pain on my right side last winter.
Went to the doctor, got an ultrasound and it was apparently a small fibroid.
My gyn said someday if it grew, I would have it removed or a hysterectomy.
Since it was diagnosed, however, theres been no pain or bother.
It hurt if it touched my abdomen where it was a certain way, so it was really close to the surface.
I am on the pill now, but that has no effect one way or another.

7

Me too, almost exactly the same. I have two apparently, but they’re no bother. I can actually feel one of them when I lie on my back on thebed, but it doesn’t hurt unless I press hard. The doctor said if they’re no trouble they should be left unless they grow really large. And apparently after the menopause they should shrink again.

8

My mom had a hysterectomy because her fibroids were so large (she looked pregnant) It was a hard descision for her but I think now she is glad to be free of the constant discomfort. My aunt wen through the same thing so… guess what I get to look forward to! yippee!

By the way, I was conceived when my mom had just the one ovary so I’m here to say that its quite possible!

9

I had several large fibroids removed vaginally a few years back. I haven’t had any children since but there appear to have been no ill effects on my fertility.

10

Actually, a lot of women have these, or will have these. Maybe even most women. They can be big or little, just one or many.

But they don’t always cause problems.

If they’re small and/or don’t cause problems it’s probably best to leave them alone. Size alone, however, does not determine pain or other symptoms - a woman could have sizable fibroids and never known it, or small ones that cause intense suffering. Likewise, one could be causing a lot of trouble, but another woman might have several and no symptoms.

It used to be the only option was hysterectomy, but fortunately that’s changing. Unfortunately, some of the newer treatments can have side effects ranging from minor to as bad as the fibroids or even worse.

It really has to be considered on a women-by-woman basis, and factors like “do you want to have children?” come into play. There is much more concern about perserving the ability to bear children in a 20 year old than in a 40 year old (and yes, there have been 20 year women with fibroids so severe that the option chosen was hysterectomy, although that is rare). On the flip side, there is no question that a hysterectomy DOES cure the problem and prevent recurrence.

Bethany, educate yourself as much as you can and take a little time to think about this. Fibroids can be horribly painful, but they are not life-threatening. You can take the time to make an informed decision. Get second and even third opinions, so when you decide what you are going to do about this you will be confident you made the right decision. Good luck, and good health.

11

I am sorry to hear you are having trouble. It is always upsetting to be young and have your body betray you. I have not had fibroids, but I lost an ovary to a tumor at 22, had precancerous cells removed from my cervix twice in my early twenties (ever smell your own flesh burning? It isn’t fun - count yourself lucky), and have also had surgery for endometriosis when I was 27. (I am now 30). Despite all this, I did conceive and have a wonderful son who is now two and a half. I have had countless internal pelvic ultrasounds, so I know what you mean.
My guess would be that on the 23rd, they will give you another ultrasound to see how they have changed, and then talk to you about your surgical options. It is amazing what they can do these days without truly cutting you open. It would be my guess that they will either dilate your cervix to go in vaginally (much like an abortion) or do a laparoscopy, where they make two to three small incisions in your pelvic area - one in your belly button and the other two near the bikini area. The scars are nominal, although since I have had two now, they sewed my belly button up smaller than it used to be. They also fill you full of some kind of medical gas to have an area to work in. They try to let most of it out, but your stomach is puffy at first. The worst part is the gas rises into your rib cage a day or so later and that is very achy. They do both outpatient as far as I know (I haven’t had the dilated cervix kind of procedure)- you are there for the procedure and go home. A laparoscopy will keep you from work for about 3 days. You can go back after that, but don’t laugh or walk alot for another week.

That which does not kill us makes us stronger. This will pass and you will be no worse for the wear. I just hope you have decent insurance, because surgery will run at least $7500.

Best of luck to you. I know exactly how you feel. When I found out I had endometriosis, I was very angry for several months that God could put me through so much. If you want to talk more, let me know. I would be happy to be there for you.

Take care. :slight_smile:

12

Thanks so much to everyone who has replied. I’ve done some online research about these things, but until I find out which kind I have – there are 4 different kinds, I think – I won’t know much. The kinds I’ve seen online are one kind that is attached by a little stalk, one that is attached on the outer wall, one that is inside the wall, and one that is inside the uterus itself. They may do an MRI to tell which kind I have. That was not on the ultrasound report.

I think the one in the uterus would be the easiest to get rid of, but I don’t have the syptoms for that. I would just leave them alone, but the pain is quite debilitating. I am having to take Darvocet for pain management. My side and hip feel fine, as long as I don’t use them. Which is rather inconvenient.

One thing that is kind of funny (well, now it is) is that the night before the ultrasound I was in the shower really scrubbing my tummy because every ultrasound I’ve ever seen has been someone rubbing something over your stomach… NOT poking things in places they ought not go. So you can imagine my surprise!

Of course, I am relieved that they were actually diagnose something specific as the reason for the pain. More times than I can count I have been to a lot of different doctors for pain in my lower legs and feet, and they are like, “…um… well, hmm. I don’t know what it could be. Try these meds.”

Talk about frustrating.

Of course, the child I was around tonight makes me want to get the chef’s knife and the ice cream scoop and remove all my vaguely suspicious child creating organs myself.

Anyway, if I have surgery for this, it will be my sixth surgery, starting with my first knee reconstruction at age nine. I’ve had five of those. Aren’t I pitiful? boo hoo. C’mon over to my pity party, bring your pajamas. And some macadamia nuts. :wink:

Sorry for the long post, and thanks for letting me vent.

13

Yeah, it’s a bummer all right. I hear ya loud & clear.

I got pregnant, no prob–then found out I had a fibroid, only one, but it was right on top of the cervix like a frog sitting on a rock. It got up to 13cm (per my ob/gyn, it was “cantaloupe sized”) by the time my healthy 9-lb son came out as a c-section. The doc said it might shrink after that, and it did, to about 5cm.

2 years later, I’m feeling pressure, bleeding like a stuck pig, etc. Seems it’s baa-aaack and it’s 12-13cm again. And bleeding.

I wasn’t planning any more children (although it might have been nice to have the option)–so I had an abdominal hysterectomy (too big for a vag) at age 32. The doc left the ovaries in, as they are OK and I am still using them.

The surgery was a drag–you’ve had more than I have, so you know about that–but once I healed, I felt great! And, best of all, I gave all my tampons to my OLDER sister. Tee-hee! And, I get to keep all of my blood inside my body every month. I technically have a hormonal period, I just have no idea when it is.

Don’t know if you have all the kids you would like yet, but once you do, hysterectomy isn’t so bad. I was astounded when I had mine to find out how many of my friends and acquaintances were “in the club.”

Good luck!

14

Okay, so here I am again. Thought I’d update everyone who was nice enough to give me info and encouragement before. I went to the first doc, and all he offered was that menopause shot. He said the fibroids weren’t really “that big,” and said that might not even be what was causing me pain. He said any surgery would compromise my ability to have kids. End of story. Well, the shot causes the estrogen to go away, and estrogen ‘feeds’ the fibroids and makes them grow. But, once you get off the shot the estrogen comes back, so, the fibroids probably do to. But he didn’t mention that part.

You also have all the other fun symptoms of menopause. I said, hmm, no thanks. Since I was naked anyway, I let them do a, ahem, pap smear.

I went to a second doc in Jackson. After reviewing my medical history, he said the shots sounded like a terrible idea for me. He did another pelvic ultrasound – you know I just can’t get enough plastic sticks shoved in my… anyway. He saw the size of everything, and said surgery was almost completely necessary.

He said my uterus, which should be about the size of a lemon, was presently the size of a volleyball. He said the two largest fibroids were the size of grapefruits, and one of them may have already crushed a fallopian tube. There are also many small ones. He said that there was no way I could ever carry a baby in my present state, because there was no room for one to grow in my uterus. Not that I’m just freaking out and ready to have kids or anything, but still.

So… I’m having surgery, a myomectomy . He said that was the best surgery for what is going on with me. I go for pre-surgery bloodwork on Oct. 25 and will have surgery on Oct. 28th. I’ll be in the hospital for 3 or 4 days, and recovery is about 3 weeks, I think.

Then I got back home and had a message from the first doc’s clinic… they found abnormal cells in the pap smear. So, yay. I need to tell doc number two about this so that they can check it while they’re poking around in that area.

I’m not happy, but that’s the way it goes. It is so weird, it’s like when I’m telling people about all of this that I’m talking about someone else. You know?

Any pre- or post- surgery tips from anyone who has had one of these? Thanks for reading this far… I know this is long!

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And still longer. I meant to say, an abdominal myomectomy. The kind with an incision.

And forgive the mis-used words above… I’ve already seen one incorrect ‘to’.

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oh gosh bwk, that all sounds quite frightening.

but your surgeon sounds like a man who knows what he’s doing, and if he’s right about the size and position of your fibroids, you really don’t have an option about the surgery.

so, i know it’s all pretty surreal, but just try to go with the flow, and keep thinking nice and happy thoughts (calming blue ocean etc etc).

importantly, don’t worry about the pap results. really. it’s probably not as bad as you think, and if it is bad, it’s fix able.

so, best of luck and lots of good wishes for next week. i’ll be thinking of you.

17

around my gynocologists office, and my local hospital I’m referred to as the “Fibroid Poster Child.”

First I’ll say to have multiple fibroids that large, you are very fotunate to not have had worse symptoms sooner. There are a few options though not many, for removing these nasty critters. They are quite common in women, and most don’t even know they have them as they remain small and seldom make their presence known. It was not til after my surgery that I found many women in my office with the same problems.

Here are some websites to help you in your research and quest for knowledge:

The Fibroid Place

Fibroid Corner

Uterine Fibroid Center

Embolization is the relatively new proceedure that there is no long term results available on, and it is the least intrusive.

The myomectomy your doctor has suggested is the most common, and incase you are wondering, these things are seldmon removed laparoscopically. The recovery from surgery is actually more along the lines of 6-8 weeks. Generally you will have a bikini cut, unless the fibroids are placed in odd positions which the surgeon can not reach through that type of incision.

Your second doctor was right, the “menopause shot” I’m guessing Lupron, wouldn’t have done much for you except make you moody and give you hot flashes. It is truly nasty stuff. However I know several women who have been able to have children after having had a myomectomy. It just meant C-sections for them. Of course since estrogen makes them grown bigger, you run the risk of fibroids recurring during a pregnancy.

I’ve had 5 or 6 myomectomies (I lost count) and after each one, my doctor assured me having kids was not out of the question. It was because of my age that we kept trying the myomectomies before going the permanent route. Before you freak, I want to mention that it is highly unusual to have so many recurrences of the fibroids, and mine came back fairly rapidly. Most women I know, did have to have more than one surgery, but 2 was their limit. There is nothing known to prevent them.

If there are any questions you have about the surgery or what to expect, please feel free to drop me an e-mail.

Good luck, and don’t worry, you are going to be feeling so very wonderful afterwards!!