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Hysterectomy for fibroids, hope I'm making the right choice Hysterectomy for fibroids, hope I'm making the right choice

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Unread 11-29-2011, 11:19 PM
Hysterectomy for fibroids, hope I'm making the right choice

I've been reading the threads and am glad to see so much support and advice here. I have had fibroids for many years. In my early 20s they became a little dramatic - I had severe bleeding, blood transfusions, crippling pain, lots of painkillers, a DVT, rounds of blood thinners - anemia, fatigue, pain. At the time I was told hysterectomy was my only choice but, in a big hospital with no insurance, I didn't exactly feel like I was getting personalized care. I was diagnosed with 'innumerable' fibroids, some very large, and a 24 wk uterus.

I found other options and used them. I had Luron injections, which helped for a while. When they enlarged again I had UAE when it was still quite new. It was successful and I enjoyed many years of normal, pain free periods.

But. If you're here, you probably know how it goes. I'm now 36, and they came back, huger than ever. The docs at first recommended another UAE but after the MRI they thought the rate of growth was troubling, and might be masking cancer.

My only hesitation is about my symptoms. I wouldn't say it's a walk in the park or anything - heavy bleeding, bad pain, constant back pain, discomfort and pressure from the big old mass of gunk in my insides - but it's NOTHING like it was before. I was dying the first time I sought treatment. Now I'm just in pain and a little tired. It makes it seem less cut and dried.

Of course, this is how the bad symptoms started before - my period is just a little heavier and longer every single month. I do NOT want to go through any of that again.

But I'm having a really hard emotional time letting go. My fiance and I tried and failed to have a baby, and I think that's ok with us, but this is just so final. And my uterus. I fought so hard to keep it. It feels like such a major part of me (and hey, right now it IS taking up enough space for several, lesser organs!). I don't think I'd feel like this about my tonsils or even a kidney. I'm out of other options, and I feel like I can't take the chance living with this, hoping it's not cancer, hoping they don't get bigger, hoping I don't get more DVTS or endure more transfusions. I HOPE my quality of life after this will be better, but I'm afraid. The internet does not help, btw.

This got so long, sorry. Hopefully one of you has been through this and will be able to understand. Thanks for being here.
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Unread 11-29-2011, 11:31 PM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Hi Yakfarmer
It can be a hard choice to have a hysterectomy. I don't think a single woman on this board would say it was the easiest choice they ever made. it sounds like you have exhausted every other option at this point.

I am 32 and I had a hysterectomy a week ago today. I too have fibroids and while I didn't have nearly the level of symptoms or history you have, I decided their time in my body was done. And then I started freaking out ... Was I making too big a deal about this? Is it worth removing a healthy organ for some lumps? Personally I decided not to try every option. I wanted them gone and I didn't want to do something that left the door open for them to come back.

Since the surgery, even with all the stuff involved in healing I don't regret my decision one bit. Turns out the fibroids and doubled to tripled in 6 weeks. My doctor was even surprised.

But that's my story. You need to be able to find a place that you are comfortable with. Perhaps they can remove the fibroids and leave the uterus? With the symptoms you've got I definitely think you will enjoy life fibroid free!
Unread 11-29-2011, 11:41 PM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Thanks for the support! I've been told by multiple docs that removing the fibroids isn't an option - there are so many of them, all different sizes, that trying to remove them all would put me at risk. Plus, since they've been so stubborn before, it;s a high possibility that they'll just come back.

I actually don't feel so bad now. Comparatively. Except the back pain, that is really a honkerblonker. And the huge midsection swelling. Yes, I know that I'll feel better to have them gone. You're right, it is HARD! Thanks for the response.
Unread 11-29-2011, 11:51 PM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Your most welcome!
Personally, I found that once I finally was at peace with having the hysterectomy it was smooth sailing. I was super nervous about the surgery and how much pain I'd be in after it and healing process etc, but that was much easier to deal with than it was finally coming to terms and being at peace about it.

I found this site to be so helpful. I found some of the scary sites first. Here I could ask my questions, compare notes and not feel like I was in as much of an emotional free fall. So ask your questions, journal your thoughts, pray if you are a pray-er and take the decision making process a step at a time.
Unread 11-29-2011, 11:57 PM
Re: Hysterectomy for fibroids, hope I'm making the right choice

There are some SERIOUSLY scary sites out there! One told me that I would become a crippled husk with no joy left in life. How is that helpful????
Unread 11-30-2011, 12:00 AM
Re: Hysterectomy for fibroids, hope I'm making the right choice

I think I found that very same site.
SsssssssoooooOooooooooooo not helpful!!!!!!! And so scary!!!!!!!! I was in tears reading some of the stuff out there. as if facing this kind of a decision isn't scary enough on its own!
Unread 11-30-2011, 12:06 AM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Seriously, my boyfriend came home from work and I was blubbering into the laptop. I totally see that many doctors recommend hysterectomies when other options are available - happened to me! - and probably if fibroids happened to men, there would be a better cure already. But some of us have run out of options, and terrifying us is just cruel.

LOL. I bet we found the same site.
Unread 11-30-2011, 01:11 AM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Hey there, yakfarmer!

My story is similar, just a bit later in life.

Major problems with fibroids - very much like yours and it took several years and 3 doctors before anyone took me seriously and diagnosed them. It was awful. I chose myomectomy via hysteroscopy and 2 very large fibroids were removed and the Dr. told me there were some more, smaller ones remaining, but he wouldn't be able to get them all.

After that came a failed pregnancy and a few years later, the fibroids were back, larger and more numerous. Like you, my symptoms this time are not as severe, but troubling just the same. My quality of life went down hill as my frequent and heavy periods started controlling my life - what I could do, when. Fear of leaving one's own house without a bag stuffed with pads, a change of clothes and/or close proximity to a bathroom can be very debilitating.

I chose hysterectomy and am 2 weeks post-op today with no regrets. My recovery is going very well - much better than either my doctor or I expected. My energy and mood have been up more than not and even when I am tired, I'm still in a great mood. And - believe it or not (I'm surprised) I was feeling a bit frisky the other day, which is not something I was expecting this soon after surgery. I feel it bodes well for the future and it put a smile on my husband's face.

Yes, it is a very hard decision, but once I made it I felt the weight of the world slide off my shoulders and was at peace. Best of luck to you whatever you decide.
Unread 11-30-2011, 09:04 AM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Aww hun, I know its a difficult decision and no one can make it for you.

I don't really regret having my TAH, I regret not having it done 10 years ago. Now, I'm 41 and recovering. I think it would've been easier at 31 and I would NOW be enjoying life as I should have. I just didn't want to have surgery because I was terrified and I didn't want to go through the "down time" because I loved weight lifting.

Well, my 12 week size uterus suddenly decided to triple in size within 2 1/2 months and I looked 7-8 months preggo. I couldn't handle that..........and it was getting bigger by the weeks.

I will say, my doc told me the fibroids will continue to grow until menopause. They will come back after a myomectomy simply because there are usually microscopic ones there that can't be seen.

This is your choice and I know you are scared. Stay on this website and forget the others ones out there. Talk to your doctor as much as possible, write down & ask MANY questions.

I will be truthful with you. This has not been a pleasant ride. I had no complications but it has taken a toll on my body & mind. I'm recovering well. Its just some docs AND people "dumb down" hysterectomies and recovery like its gallbladder surgery. Your body has gone through a lot of trauma for TAH and it does take a long time to heal internally (6-12months) and I keep telling myself it will be worth the fatigue, pain & frustration for that length of time to be able to have a good quality of life from now on. I can't believe I spent so many years just "dealing" with it.

It'll be ok.
Unread 11-30-2011, 09:31 AM
Re: Hysterectomy for fibroids, hope I'm making the right choice

Like Keltec said, it's not an easy surgery and not to be entered into lightly. If I made is seem like a cake walk, it isn't.

I'm lucky. My recovery has been much easier than many of my post-op sisters and I feel great - for a woman who has had her belly slice open, had her insides tugged on and parts removed. I'm still sore, my belly is tender, I occasionally suffer the dreaded swelly belly, I tire very easily and my activity is limited. I worry that because I feel so good that I'll 'forget' and do something I shouldn't and cause a setback.

I follow my doctor's instructions pretty carefully. My one weakness is cats. I have 4, one of whom is an undersized, handicapped runt. Reaching down to scoop her up is a habit that isn't easily repressed, especially when her legs quit on her and she needs a hand up.

I've seen those other sites you mentioned. Avoid them. Any site that doesn't offer unbiased, balanced information has an agenda. HysterSisters is about education, options and support no matter what decision you make.

Take care and best of luck.

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