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Huge fibroids. I want to fight this Huge fibroids. I want to fight this

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Unread 12-28-2010, 11:17 PM
Huge fibroids. I want to fight this

I've been stressing and thinking and crying and...and...and

I want to fight this! This is just nuts! I am not in pain from this beasties! I don't have irregular periods! In fact I had no clue I even had these buggers untill my doc felt them during my yearly check-up. But she said I can feel what I think is a massive fibroid and you'll probably need to have a hysterectomy. So yah I get the ultrasound, and yah my uterus is the size of a 5 month pregnancy, but still! I'm not in horrid pain! There's absolutely got to be another option rather than just hack me open and take out the offending parts because they're abnormal in size, and will likely only get bigger.

I'm only 34! And here's the kicker. I don't want to have children. I just don't want to have this surgery. I feel like I'm not going to be taken seriously if they know I don't want children. Like well you're not trying to save your female organs for any "Real" reason so why don't you just take them out.

I was sent to see a specialist and he pretty much said exactally what the doc said, they're huge the whole thing should just come out. Oh and even though your cervix is healthy now, you've had abnormal pap smears in the past and a LEEP so we should just cut that out too. But hey your ovaries look healthy! I think that was the part that just put me over the edge. My gut reation to learning aout what was involved in removing the cervix was :"This is just WRONG!!! "
I think my "Rebellion" started at the moment when I decided that I was going to fight him to keep my cervix because I don't think I'd be able to feel like a complete woman without it.

Now I'm second guessing the logic of removing my uterus. There has got to be alternatives for me on this, Anyone know any resources, websites, or good specialists in the seattle area? Would love to know.

I honestly think I should storm this darn castle! I just gotta find the right armor and shield to use.
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Unread 12-29-2010, 12:03 AM
Re: Huge fibroids. I want to fight this


Well I did a little internet searching and I found a doc close by that I want to go get a second opinion from. His web page says he specializes in minimally invasive methods, and in his quote he says "I strongly believe in educating my patients to enable them to make well-informed decisions concerning their health care."
For the first time since I got this diagnosis I'm feeling hope and not hopeless. Granted I'm also feeling very honkerblonky and battle ready right now. But I finally feel like I have some options here, and not just the option of doing nothing about this.
(my mom was diagnosed with a huge fibroid years ago and told the same thing - hysterectomy. But she just freaked out about the diagnosis and did absolutely nothing about it. But then again my mother does not have a spine, and won't do anything to stick up for herself in any way, so I'm not completely surprised she chose to just ignore it for years and years. Sad thing is that her denial is so bad that when I told her about my diagnosis and really wanted to talk to her about what she went through, she flat out denied that she'd ever had a fibroid problem. )
Unread 12-29-2010, 05:56 AM
Re: Huge fibroids. I want to fight this

I understand your problem completly. I have a big fibroid also. I am 45 done having kids and the Dr said to take the uterus out you do not need it anymore. The fibroid is pressing on my bladder and when I work out I leak a lot of urine, that is why I want to remove it but I want to keep my uterus and the dr said I do not need it ! I would rather do a myomectomy but most Dr's do not want do this procedure. ( take the fibroid out and keep the uterus). So I scheduled a hysterectomy for Feb 1 st but have huge 2nd thoughts!
Every morning a I feel like canceling my surgery but have not yet!
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Unread 12-29-2010, 06:17 AM
Re: Huge fibroids. I want to fight this

if your not having problems with the fibroids you can just do nothing.From my understanding most woman have them,it's the ones who have problems that seek treatment.If it doesn't bother you to have something that big inside you then it probably won't hurt to wait.tell your doctor you would like to watch it for a while to see if it grows or causes problems.I don't think you will be happy with a hysterectomy if your not having any problems from the fibroid.Most of us who have fibroids are trading the relief of pain,heavy bleeding and pressure for a life without all of that with the hysterectomy so it's worth it to us.I can't see doing it if you have no problems.Suppose they hurt something else while removing your uterus such as your bladder or bowels.You would go from not having any problems to now dealing with bowel or bladder issues.It can happen but like I said to most of us it's worth the risk if it will mean a life of not living around heavy periods and hiding out in our homes for days until the heavy bleeding stops..I don't regret having mine but it has not been the easiest thing I've ever done.Good luck with your decision.
Unread 12-29-2010, 08:49 AM
Re: Huge fibroids. I want to fight this

To any of you ladies considering a hysterectomy for fibroids - I am 51 and had a robot-assisted laparoscopic myomectomy for a large uterine fibroid November 2010. I would urge to to get an opionion from a robotic/laparoscopic surgeon to see if you are a candidate for a myomectomy. If you are really serious about keeping your uterus this type of surgeon is really your best hope.
Speaking from experience! All the best, Carol Vaghar
Unread 12-29-2010, 08:59 AM
Re: Huge fibroids. I want to fight this

Funny, your story is very similar to mine except my 8 cm fibroid was causing spotting and heavy periods. I'm 33 and want no children but also didn't want to get hacked open if I had another option. So I did my research and had UFE in May. Yes I still have some bleeding problems that make me want to gut myself, but my periods have improved drastically and i'm no longer anemic. Trust me I understand your thinking completely. My last ultrasound showed a shrinkage of about 3 cm. So i'm at least heading the right direction, just not fast enough for me.
Unread 12-30-2010, 06:22 PM
Re: Huge fibroids. I want to fight this

Wyld_ivy, as I was reading your post, I took a double take at your name. I was thinking that perhaps this was an old post of mine!

I'm 45 and my PCP discovered what I think was my largest fibroid during a routine exam in October. I'm still trying to rack my brain about symptoms. I can't remember having any until the week or so before my surgery when I felt pain. Also, when I slept on my stomach, I could feel the fibroids. My ultrasound revealed that the fibroids (many large fibroids) were pressing against my kidney. I too was told that the uterus was the size of a 5 month pregnant uterus. In addition, while she was pregnant with me, my mother took a drug called DES to prevent miscarriage. DES daughters are more likely to get a rare form of cervical cancer. However, I had not had an abnormal pap. Because of those factors and the fact that I wasn't planning on having more children, my doctor said that a hysterectomy (with the removal of my cervix) was my best option.

I sought a second opinion from a doctor who suggested that I investigate UAE/UFE. I got a consulation with the interventional radiologist and had an MRI. Prior to talking to the radiologist about the MRI results, I had decided that the UAE wasn't for me. I didn't like the idea of foreign plastic matter clogging my arteries. In addition, since I was not having pain, and one of the side effects of UAE is pain that may last longer than the hyster recovery period. While I was waiting to hear from the radiologist I saw a third OB/GYN. She is my sister's doctor, was booked until late Nov when I saw her, and has more expertise with patients who have UAE. She reviewed the MRI with me and said that I had to do something (either hysterectomy or UAE). Doing nothing was not an option and my fibroids were too big to have a myomectomy. Finally, the radiologist called me and apologetically told me that because of the size of my fibroids, I was not a candidate for UAE. I was relieved to hear that.

As I type this, my pathology report is next to me on the bed. It is remarkable. My uterus that I believe was not giving me symptoms weighed 854 grams, over 8 times the size of a normal uterus. It was described as 'markedly distorted.' My right fallopian tube and ovary were attached to the cervix. The uterus and cervix measured 20 x 11.5 x 10 (normal is about 8 x 6 x 4).

Although prior to October, I had no idea I would be 2 weeks post op from a hysterectomy, I am glad that I had it. The ultrasound and MRI gave me some information, but the Dr had no idea what was in there until he did the surgery. My daughter and husband described the Dr as jubilant when he came out of the surgery. He told them that he didn't know how I was carrying that around.

Good luck to you on your journey. Get all of the information you can about your options, that will help you make your decision. I still marvel at the fact that I didn't notice symptoms and was just thinking of searching 'no symptoms' on this site to find someone like you, and there you were!
Unread 01-02-2011, 09:24 PM
Re: Huge fibroids. I want to fight this

I have felt exactly like you. And like you, I have fought this for over two years now. Over 2 years ago I was told I had a 9.5 cm fibroid and 2 smaller ones. They just grew in a matter of months. I, too, thought the idea of having my uterus taken out for a benign tumor was outrageous. I had Ayurvedic treatments done, as well as acupuncture. I have managed for over 2 years now to keep the fibroid at bay and it hasn't grown any further. Actually, the largest fibroid now measures 9cm. But I realized that I fought the good fight and my yoga teacher said to me, "you've done all you can it's time to let go." And she also said, "some of us like to carry our burdens instead of letting them go." This really caused me to think about why I was resistant to surgery.

I have symptoms, which I don't think are too bothersome but whenever I tell anyone what they are they think I'm crazy for living like this for as long as I have. I think I just got used to it. And I realized that I was/am terrified of surgery and am a control freak so surgery is the absolute, ultimate form of not being in control. I finally decided to "let go of my burden" and am scheduled for LSH on 2/10. Absolutely check out all of your options and do not make any hasty decisions. It took me over 2 years to decide on surgery, however I was having sonograms every 6 months to ck the growth.
I know I went through all of this to only ultimately have surgery but I'm at peace with my decision now whereas before I would have felt pressured to have it done.
As long as you are being checked regularly to monitor the growth of your fibroid and the symptoms are not affecting your day-to-day life, take as long as you need to make the best decision for you.
Good luck with whatever decision you make. I hope I've helped at least a little.
Unread 01-11-2011, 03:13 PM
Re: Huge fibroids. I want to fight this

You sound like me. My uterus is 10.4 x 6.4 X7.9 ( at least as of 7/26). I had another ultrasound done in December and I was told everything was the same except for my complex ovarian cyst which grew to 6 CM. The doctor went to take this out laproscopically and I woke up to hear that he couldn't remove it and that I needed open surgery and a hysterectomy!!! He could not remove the cyst because of a fibroid pressing on my bladder Back in July, the ultrasound showed this fibroid at 4.4 X 4.1 X4.7, and my report also listed a posterior at 2.9 X 2.5 X2.6 and a fundal at 2.6 X2.5 X2.3. I do not have any symptoms. But my OBGYN thinks my bladder muscle would be happier and that I might be in danger of prolapse. I am 43, and have been having hot flashes for two years, increasingly shorter (3 and 4 day) and lighter periods. They are now starting to stretch out to 31 days. Prior to Jan 2008, they were at 28 days, in Jan 2008, my cycle came at 21 days and ever since, it's been different. For 2008, the cycles were at 26-27 days, 2009, they were at 25-27 days and last year they were 25-31 days apart. I don't know what to do. I would rather have a laproscopic surgery if possible. Apparently, my ovary is behind my uterus and my doctor said the fibroid pressing on the bladder is too big to work around, and too close to the arteries. I am not aware of any bladder issues- I can go hours without having to use the bathroom, unless I drnik a lot of water in a short time- ie 32 oz plus in less than an hour, then I have to go in about an hour to an hour and a half.

Just confused, not sure what to do and hoping and praying for a better alternative.
Unread 01-11-2011, 04:18 PM
Re: Huge fibroids. I want to fight this

Wow, the thing that surprised me the most about several of these posts is that feeling that you are somehow being forced to have surgery when you have no symptoms or feel like you can live with your symptoms.

Unless your doctor tells you that you have an emergency situation, a hysterectomy is optional. (Actually, it's still optional at that point, but I assume you would choose surgery if death was the only other option.) No doctor can tell you that you "must" have it. If you don't want do, don't. It's your body. Say, "No, I am not ready to do that."

But understand - nobody "wants to be hacked open". Of course no one would have the surgery if there was another way to fix these issues.

I am in my 12th week post op and I've read so many posts here in addition to my own experience. This is what I would say to you or anyone who is facing a possible hysterectomy:

YOU need to be in the mental and emotional state of mind that you have decided that the quality of life and health you have now is not acceptable, and that you have educated yourself on other options, tried other things, and YOU have decided that in order to move forward and get better, that the hysterectomy is necessary.

That you are willing to accept whatever complications there may be, or the ways in which your sex life, or physical life, may change afterward. That YOU have the faith that you will handle whatever future obstacles come up, that YOU understand that a hysterectomy may not solve all your issues, it may only be a first step.

Until you are in that head space, you do not have to proceed. UNTIL YOU ARE IN THAT HEAD SPACE, YOU DO NOT HAVE TO PROCEED. You have the right to say no. You have the right to say no until you die. No doctor has the legal right to push you into surgery, even life-saving surgery. So understand that you ARE in control.

Many of us on this board followed the "wait and watch" protocol until our fibroids were huge and starting to cause other problems. I was not in pain from my fibroids, even though my gyn was alarmed at the size and how much they were growing. She warned me that they would soon start pushing on other organs and causing problems.

I still said no, until I found other information that made it clear to me that problems I had had for years could be related. I had been anemic to the point of extreme exhaustion for several years and could not seem to get my iron level up. I was taking supplements that never seemed to help.

Well, duh. I was carrying a huge mass of tumors that were taking a blood supply and that were probably sucking up every nutrient I put into my body. They were positively thriving in there as they gradually depleted "the host".

They are not cancerous, but they are invasive, growing things that don't belong in there.

Then, as I really started to suffer symptoms of perimenopause, like memory problems, hot flashes and anger that I did not want to live with, I found that I could not take the hormone therapy I wanted because it would make the fibroids grow faster.

I had known I had fibroids for at least ten years, probably 15. I was doing the "watch and wait" since I didn't think they were causing me any problems. I refused to undergo surgery for something that didn't seem to be hurting me.

But then I had finally come to the place where I could not get better and I felt that the fibroids were standing in my way. I was afraid of the surgery like every other living being would be, but I was in that head space now that I and I ALONE had decided it was what I needed. My fibroids were so large by that time and I had never had children, so the only option for me was abdominal hysterectomy (thank God, or I would have driven myself nuts trying to decide what surgery to have).

I went ahead with it knowing that it might not be the total answer to feeling better but that I was at least removing an obstacle.

But there are certainly emotional elements to the process, there can be physical challenges during recovery and changes in life afterward. If you feel you are forced into it, you may have a very difficult time coping with that. So by all means, if you strongly feel you are not ready, don't do it.

If and when you come to the point where your current quality of life is not okay, that's when you may be ready and willing to go ahead with it. Hopefully that time comes before you are in an emergency situation or are so tired that you give up on life, which is where I was.

For my own part, the surgery was fine, everything went smoothly, and I am feeling pretty much back to normal now. I don't know if I will be able to do the physical things I was doing before, like weightlifting - but I also know that before surgery, I didn't have the energy to do anything anyway. I have been able to kick my estrogen and progesterone levels up and I can tell you that I feel like a different person. Estrogen makes all the difference in how your brain functions. That being said, hormone replacement therapy is neither cheap nor simple, it takes time to find the right balance. I knew that going in so I am not frustrated by that reality.

So please, all of you who feel you have to "fight this", for heaven's sake, don't let yourself be pushed into it. The decision is and always will be up to you. But read everything you can and educate yourself.

If you want to see a photo of what was taken out of me, email me! I'm glad I had the doctor take a photo, because after seeing that I can never have any second thoughts.

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