Hysterectomy and Fibroid Questions

Updated on June 19, 2014
S.C. asks from Arlington Heights, IL
13 answers

Where do I start. I have a few or several questions I need to get some advice and or other people's circumstances/situations on having or had a hysterectomy.
Here is my scenario. I have had fibroids for a long time now and it is causing me some problems as heavy bleeding for the first two days, pain usually at that time if the month. But I have been getting pressure and pain on my side and they don't know if it is all caused by my fibroids or my gallbladder, gastritis or they just don't know. I have several fibroids but I have one big one that I think is about 4 inches and i have other health issues. Such as heart, asthma etc. and they are concerned that I am a little bit anemic and have low blood pressure and am allergic to everything under the sun. I was told that they can do an ablation but that there is some dye that they have to inject into my arteries and that can cause severe allergic reactions and with my history they are leery. They then said they can put me on lupron to see if they can shrink the uterus and after 4 months see if they can do an hysterectomy with only doing 4 incisions. If not then they will have to do a long incision and open me up. They also were talking about going in and chopping the fibroid and I do know that they really aren't supposed to do this procedure anymore due to some women having this done and when then chopped up the fibroids and I'm guessing the uterus that they had cancer and it spread everywhere do to them doing this procedure this way. The last one I don't know if anyone of you have heard about this but there is a procedure where they only do it in 4 states and 1 of them is MN, at the Mayo clinic. It's called MR guided focused ultrasound. Where they have u lie in an MRI for 4 hours and a super hot ultrasound machine is under your pelvis area and they zap out the fibroids. This is a 2 day long procedure which also comes with risks. I'm a bit scared do to this has supposedly been around for 10 years the women told me today. But we don't know the statistics or what happened to these women afterwards. I keep thinking how can you burn out something in your body and not hit any other organs? This is a non-invasive procedure as they do no cutting.
So I wanted to know if any of you have had to get a hysterectomy for these reasons or if you have taken lupron, know of any of these procedures and have had them and you experiences.
What your suggestions are?
How you felt if you have or had huge or a lot of fibroids or any of the procedures above.
This is a very hard decision for me as I have so many other health issues and even the doctors shy away from a lot of things for me. Medicine is a difficult thing to try and find for me due to allergies. So the worry is any pain medication, reactions, don't know what kind of medicine they can give me to prevent me from getting an infection etc.
I'm not going to have any other children, I'm not close to menopause. If you also know of any doctors that you have seen that you have great recommendations would be helpful also.
So basically any and all information you can provide would be great.
I hope I gave enough information and thank you in advance for your help and answers.

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C.W.

answers from Nashville on

I had fibroids and had a hysterectomy in March 2013. I don't have any regrets, only I now have hot flashes (had ovaries removed) and a scar that runs from my naval to my pubic area, but I'll take that over the heavy bleeding, cramping and anemia anyday.

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M.P.

answers from Portland on

I have had a hysterectomy because of fibroids and endometriosis. They also took out only one ovary so that I wouldn't go into early menopause. My doctor did a bikini cut so they could see what else was going on in my abdomen.

I have had several major surgeries including one for carcinoid lung cancer. I have always come through without serious difficulties.

There are always risks to surgery. I focused on the positive results from surgery. Your doctor is aware of your medical conditions and use that knowledge to minimise the risks. I suggest that very few women die from a hysterectomy. Your doctor has to tell you about the worst that can happen.

If I were in your situation I would opt for the surgery. I was in pain for years while the doctor tried other options.I held on to my uterus all those years because I hoped to get pregnant. It didn't happen.

3 moms found this helpful

T.F.

answers from Dallas on

I did not have fibroids. I did have a complete hysterectomy about 12 yrs ago and it was the best thing I ever did for myself.

You'll get differing views but I opted for the Dr. to take everything and go on HRT patch at that time. I realized that the potential for breast cancer was higher if I opted to remove ovaries but at the same time, breast cancer is much easier to detect and survive than ovarian cancer.

I had an incision like a C-section. It is hardly visible now. I have never felt or look better. I truly believe the physical condition you are in before surgery as well as the attitude of surgery and recovery play a major part in recovery. I was determined to get back to myself asap because I didn't want to be all needy for my family. I am active and not one to lay around feeling sorry for myself. On the other hand, my SIL just had a hysterectomy (10 weeks ago) with the 4 little incisions and removal through vagina and she is still complaining of all her aches. It doesn't help that she is grossly obese but it is like she wants to just lay around all day and do nothing because she had surgery.

I found the website www.hystersisters.com to be very helpful. Sometimes there is too TMI on the forums but at the same time, SO many different views on different treatments, hormones, what to expect, etc.

Like I said, it was a good thing for me. I did not gain weight, I did not lose sex drive. I stayed on the HRT patch Vivelle Dot .075 about 10 yrs and went off of it cold turkey when I would forget to put a new patch on and not notice any symptoms. At that point, my Dr. said my body may not need it anymore to go cold turkey and play it by ear.

Best wishes to you.

2 moms found this helpful
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S.W.

answers from Amarillo on

I had my hysterectomy about 20 years ago and I had fibroids. I had the heavy periods couldn't use tampons too much blood flow and soaked pads. When I did have to go out and could not change regularly I would use a Depends as backup.

Since I lost an ovary in my youth I only had one left and opted to have it removed as well. My surgery was the bikini cut with everything being sewn up and put into place by the surgeon my OB/GYN. The fibroids were 4 inches or more. I did use the HRT for a bit but had other issues and had to stop. I already knew I did not want any more children so it was a no brainer.

It as the best thing I could have done in my life. Not only because of the bleeding but I was now not anemic and could function as a human being and enjoy life. My doctor said I looked much better after surgery than I did before. No more dark circles under my eyes.

So do more research and come up with a plan and go with it. Think positive and stop worrying. You know you need to do something to correct your health issues so go for it.

I don't know about the laser thing. I would have to have more info on it and they would have to show me some slides or films or such to clear up questions.

Good luck to you and keep us posted.

the other S.

PS Perhaps if you get this done some of your other medical issues will go away or at least you can get them corrected. It's no fun being ill.

2 moms found this helpful

B.K.

answers from Chicago on

I had all the issues you describe. And then I had a hysterectomy (kept my ovaries) at age 40. Best thing I ever did for myself ever! I am so thankful my doctor listened to me and agreed to the surgery. At first he was recommending other things. I honestly didn't want to waste my time with all of that. I wanted it removed. My recovery time was minimal and it changed my life. I would do it again in a heartbeat.

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M.B.

answers from Austin on

I had a lot of fibroids, but I don't remember how many, or how large the largest one was. (I think one may have been around the size of your largest one... I don't know, but I remember the OB/Gyn doing a fundal height measurement and commenting that my uterus was about the size of a 4-5 month pregnancy.)

My monthly bleeding was getting ridiculous..... maybe 2 weeks, and at least one day of heavy flooding past tampons...

Rather than a hysterectomy, I had what was called a Uterine Fibroid Embolization..... they go in through the uterine arteries and block them where they are feeding the fibroid.

It worked wonderfully for me! Overnight stay in the hospital, then home..... I took it easy for a couple of days, but that was all, I think.

It pretty much made my periods go away for about 6 months, then they came back, but MUCH lighter.

I had this done in probably 2006, when I was 48/49... I just wanted something to slow things down until I went through menopause.....

I am now almost 57, and as far as I know, I'm through with the monthly periods (my last one was August 2013)...... I did have a regular period after the procedure (after about 6 months), but it was amazingly light... just a few days of very light to maybe normal flow.

I realize I haven't had the procedures you mentioned, but I wanted to share my experiences with you.

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R.A.

answers from Chicago on

I had fibroids for many years before having a hysterectomy. I had a procedure called a myomectomy, essentially a c-section to remove the fibroids but keep the uterus. As I was warned, they eventually grew back, and bigger than ever. That is the problem with almost all other options to shrink or remove fibroids - prior to menopause, they typically grow back. I had a hysterectomy about five years ago and have never regretted it.

I had a laparoscopic procedure (the surgery you describe, where they go in through small incisions and cut up the fibroids before removing them). I am not sure where you heard that this creates problems with cancer. Typically, fibroids are NOT cancerous, and they can determine that prior to any surgery by taking a small sample for a biopsy. The laparoscopic surgery makes for a dramatically quicker and easier recovery - if you are a candidate for that, I highly recommend it.

From my own experience, I can tell you that since my hysterectomy, my life has been much improved (I had menstrual cycles so long and heavy that I was sometimes housebound just because of the heavy blood flow, and the fibroids were so large I could lie on my back and feel them just by pressing on my stomach.)

It sounds like the main thing you need is a doctor you feel you can trust. Good luck!

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C..

answers from Columbia on

I had the same thing.... heavy, heavy periods. Fibroids. Cysts.
I had a hysterectomy a year ago using the DaVinci robot (so I basically have 5 small "dots" which are really puncture wounds rather than an incision, but they are almost completely gone now).

I felt bad for about a week. Not as bad as my c-section. I spent overnight in the hospital and then after like the 2nd day at home I was really fine.

They did take both my ovaries, and about 2 months after the surgery I opted for some premarin - low low dose which I'll stay on for a couple years and then wean off.

Overall, I wish I had done this during my c-section. If I'd known I wouldn't be able to carry more kids i would have done it WAY sooner.

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X.Y.

answers from Chicago on

I highly recommend Dr Song out of Delnor hospital. He is a recognized Dr in Chicagoland in woman's health. Plus my sister works there and says he is the nicest Dr she's ever met. When I had my initial visit w him, he spent 1 1/2 hours w my husband and I. Per Dr Songs recommendation, I opted for a myomectomy, using DaVinci. He recommended a myomectomy based on my age.

Best wishes

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M.M.

answers from Boston on

I have a history of both fibroids and endometriosis, which kept coming back after other procedures to remove them. At age 44, I the fibroids were back with avengeance so I had my hysterectomy (and incidental appendectomy, due to the endometriosis). The gyn did the whole thing lapascopically and within about a weeka nd a half I started to feel like myself. I didn't take any antibiotics after the surgery because I too have an assortment of allergies, and I didn't have any sort of post-surgical infection. I did use the lupron for 3 months prior to shrink the fibroids and the endomotrial growth on my ovary (the growth that was actually suffocating my appendix). Don't know how much they actually shrunk, but the nasty bleeding stopped and so didn't all the pain and I felt better. My cholesterol, however, has been a bit out of whack ever since the lupron.
Hysterectomy was the best thing I did in my situation and recommend that you consider it
FYI:they left my ovaries
Good luck and feel better

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M.S.

answers from Portland on

I haven't had to deal with this yet, but, my mom had her hysterectomy at 36, when I was 17, and it sure did make a difference for her. She says it was the best thing ever! She only had the uterus and fibroids taken out. She had at least 3 the size of grapefruit, and it was making it so that she couldn't even leave the house because the bleeding was so bad. She was anemic, and would come close to passing out from that and her low blood pressure.

I wouldn't have to ovaries out if you don't need to, but do the hysterectomy! She had already had 3 c-sections and 2 d & Cs, so she has the binkini cut and it really is like a c-section for rules, guidelines, and recovery. They used an epidural for pain management and surgery. I think she didn't hit peri-menopause until she was about 45-50 or so. I am guessing since she is too "private" to tell me when I asked. (I wanted to know what to expect family wise.)

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K.B.

answers from Chicago on

I have numerous fibroids, but no heavy bleeding or cramping. Because of this, my current and previous OB/Gyne doctors have recommended that I do not have surgery - unless these symptoms start. I found out I had them during my first appt after discovering I was pregnant. I had no clue.

I don't even have to take over the counter meds. However, as I get older, they are making me slightly uncomfortable and believe that some sort of surgery/treatment might be a good idea.

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A.L.

answers from Las Vegas on

Hello
I have several fibroids and one in the front of my stomach that has grown, although doesn't protrude, when lying down, I can definitely feel that it's getting bigger and bigger..
I haven't and won't go for surgery, as I have had a C-section and that was quite enough for me...........
Instead, I read and read up about fibroids and alternative measures.. Some say that definitely don't do the surgery because there is NO guaranty that the fibroids won't grow back...
You don't mention your age, but IF in your 40s, part of the heavy bleeding is not only due to fibroids, but the whole PM thing going on..
which for me, now at 50, I have noticed that although for the last few years, I would have an extremely few days of bleeding when my period first began has now begun to taper off to two.... and the cramping is less..
however, I still get some sciatica because one of my fibroids pushing down on that nerve ( for this , I do stretches which helps to a degree..
there is a site called earthclinic,com (it's free) there is some good info on there about fibroid reduction and alternative remedies)
also.. MOST articles I have read all seem to suggest that fibroids tend to respond to insulin raising foods such as sugar, white flour and other goodies... and too, body fat, which hold Estrogen, is another thing fibroids seem to thrive with..
if you can reduce your body fat (jf need be) and rid your diet of the insulin raising foods, this can help. while I haven't had my fibroids checked since the onset, I can tell a difference in how bloated I feel when I have eater insulin raising foods vs non-insulin raising foods..
there is also a website called hysterister.com (for those who have had hysterectomy) but I think most or some might tell you to not go that route unless absolutely necessary..

good luck and keep us posted..

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