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Wed Feb 1, 2012, 01:21 AM

I have a friend who has fibroids and has decided to have a hysterectomy

instead of having less invasive procedures like embolization or oblation because she's been told that hysterectomies aren't that painful. I have tried to tell her how painful they are as I had to have one last year but she seems to thing that I am the aberration. If you have had one or know someone who has, can you attest to how painful and how long the recovery was....I would appreciate it.

I posted this in General discussion and decided to ask here.

24 replies, 7990 views

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Reply I have a friend who has fibroids and has decided to have a hysterectomy (Original post)
Ecumenist Feb 2012 OP
Tumbulu Feb 2012 #1
Ecumenist Feb 2012 #2
SheilaT Feb 2012 #3
Ecumenist Feb 2012 #4
Myrina Sep 2013 #24
murielm99 Feb 2012 #5
BlueIris Feb 2012 #6
magical thyme Feb 2012 #7
tanyev Feb 2012 #8
woodsprite Feb 2012 #9
MorningGlow Feb 2012 #10
divineorder Feb 2012 #11
Laptop2013 Sep 2013 #12
gopiscrap Sep 2013 #13
Rhiannon12866 Sep 2013 #14
Laptop2013 Sep 2013 #15
Rhiannon12866 Sep 2013 #21
Laptop2013 Sep 2013 #23
Delphinus Sep 2013 #16
Laptop2013 Sep 2013 #17
Delphinus Sep 2013 #22
Name removed Sep 2013 #18
Laptop2013 Sep 2013 #19
Name removed Sep 2013 #20

Response to Ecumenist (Original post)

Wed Feb 1, 2012, 01:30 AM

1. The five women that I know

who have had them say that they were the hardest thing to get over- the most difficult and painful recovery that they had experienced to date.

What is funny though, afterwards, they say that they felt way better than they ever felt with a uterus. But not one of them would recommend anyone to get one unless it was a life or death matter.

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Response to Tumbulu (Reply #1)

Wed Feb 1, 2012, 01:37 AM

2. The pain and recovery thing is what I was trying to tell her but she seems to think that

I was only in pain because of my cancer, ( and no, that wasn't it). I tried to tell her because she had a myomectomy 11 years ago and SHE WAS ACTING AS IF SHE HAD HAD A DOUBLE AMPUTATION. She keeps telling me that someone, I have yet to find out who this someone is, BTW, told her that it was a snap. The thing is that she's going to have to have an abdominal hysterectomy and that is definitely NOT easy to get over. Thank you, Tumbulu!!

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Response to Ecumenist (Original post)

Wed Feb 1, 2012, 02:06 AM

3. It's major abdominal surgery, right?

 

I haven't had a hysterectomy, don't have fibroids, so I can't really offer much from a personal perspective. But I've been crazed for the past forty years or so that women have been brain-washed into thinking that hysterectomies are minor surgery, and that what's being cut out just isn't very important. Am I the only one out there who thinks that we ought to do our best to hang on to all our organs?

Okay, rant off. Do your best to make her understand that no matter what, it really is major surgery. There will be pain. There will be recovery time -- which varies a lot from person to person, but isn't the basic rule of thumb six weeks at a minimum? This is not a procedure like a root canal where you can get up and walk around immediately after, and return to work three days later. So long as she clearly understands all this, then fine. It is her choice, after all.

(In some ways I'm the wrong person to ask about any kind of surgery. I had a C-Section with my first baby, and was able to stand fully upright within 24 hours. Nurses on my unit all said they'd NEVER seen anyone recover from a C-Section so quickly. I was driving a stick shift (we needed a new car and I was test-driving) three weeks later. Fortunately, I got the message and do not ever expect anyone to recover as quickly as I did. Major surgery is major surgery. We deserve to take all the time we need to recuperate, and no one should ever be expected to recover as fast as someone else.)

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Response to SheilaT (Reply #3)

Wed Feb 1, 2012, 02:43 AM

4. Exactly, this is EXACTLY what I was trying to tell her. I told her to explore every other option

before the hysterectomy. I told her that there are consequences FAR beyond the dact that she's having an ORGAN removed and it isn't cancerous. I have told her that it is singularly the most PAINFUL surgery I have EVER experienced. I have had an ovary removed, about 10 feet of colon and my omentum removed, part of my stomach removed, a T&A@17 yo, (HORRIBLE, trust me), a laparotomy and a ganglionectomy and that hysterectomy was the WORST PAIN I EVER EXPERIENCED!

She won't listen and actually got kind of smart with me. I will try again but honestly, she p*****d me off! I'm of half a mind to remind her how I tried to tell her how painful it would be and how long the recovery time would be when she's whining about her pain. I know that's mean but really, she was really snippy and hurt my feelings.

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Response to SheilaT (Reply #3)

Tue Sep 24, 2013, 01:16 PM

24. Not 'major abdominal surgery' anymore ...

... with lasers et al they can basically make an incision next to your belly button about 2 inches wide, go in with lasers & a camera and disconnect, then pull everything out thru that small incision.

I was supposed to have an ablation last year due to endometriosis, fibroids & heavy irregular periods but my uterus was too big. Thanks to the scrape the dr gave me to remove the endometriosis I have worse cramps than ever. Really wish I'd have opted for a total hysterectomy as Plan B instead of 'scrape it out, wake her up & hand her a bill'. My problems are as bad as they ever were.




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Response to Ecumenist (Original post)

Wed Feb 1, 2012, 03:53 AM

5. I had a hysterectomy at forty-one, because of fibroids.

I wish I could have avoided it. The recovery is long and painful. Cutting through major muscles is a big deal. It takes a long time for them to heal. The scar is ugly, too.

I don't know how old your friend is, but there are later consequences, too. I now have a rectocele and a cystocele because of the hysterectomy. A cystocele is basically a prolapsed bladder. A rectocele means that the front wall of the rectum bulges into the vagina.

My problems are not severe. If they do become severe, I will need major surgery. Both of these conditions came about because I have no longer have a uterus to support these structures. Over the years, they have collapsed into the place where my uterus used to be.

I may be able to avoid surgery. Your friend may not be able to avoid it. I wish a less invasive procedure had been an option for me, but my surgery was twenty-three years ago. Please tell your friend to google these conditions, and the learn about the problems they can create.

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Response to Ecumenist (Original post)

Wed Feb 1, 2012, 05:54 AM

6. My aunt just had one, but it was done via a newish laproscopic approach.

Said she only had to take one pain pill afterward. My mother however, who had a traditional vaginal hysterectomy in '00, was on pain meds for three weeks.

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Response to Ecumenist (Original post)

Wed Feb 1, 2012, 11:33 AM

7. pain and loss of an internal organ is only part of it

 

Any major surgery entails major risks, from the sedation to the potential for nosocomial infection. A lot of people die not from their original problem but from their treatment.

When somebody gets "snippy" with me, I try to recognize it as a sign that either 1. they aren't telling the whole truth, or 2. I'm overstepping their boundaries, or 3. they're afraid of something, or 4. something is going on that I haven't thought of yet. So as hurtful as it can be, try not to take it personally, step back and see where it is coming from, and go from there.

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Response to Ecumenist (Original post)

Thu Feb 2, 2012, 10:09 AM

8. Flip side: I had a uterine ablation three years ago because of fibroids

and it was THE BEST DAMN DECISION I HAVE EVER MADE. I've had no periods since it was done and it was practically painless. There was some bleeding afterwards, but no worse than a regular period (in fact, not nearly as bad as the periods I was having) and it steadily tapered off over the days/maybe 2-3 weeks following the procedure.

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Response to tanyev (Reply #8)

Thu Feb 2, 2012, 12:53 PM

9. Uterine ablation was wonderful - and I would recommend that over a hysterectomy

as a first intervention mainly because of hormone issues. Of course, that may not help with the fibroids. I don't know much about them. I will say that if you have an ablation, just make sure you are vigilant in your pap smears and getting to the doc if your situation changes (you have bleeding - even light - when you haven't experienced it since the procedure, etc.)

I had an ablation that worked well for almost 2 yrs. It didn't stop my periods totally, but they went from deluge to just spotting. Eventually my cramping changed (I thought it was scar tissue), then my bleeding picked up a bit. They thought they were going to have do another ablation (it only works on 75 to 80% of women on the first attempt). They did the pre-procedure testing and found that I had uterine cancer. If I hadn't been so aware of changes, I may not have been able to diagnose the uterine cancer until it became much more invasive. They said the additional cramping was the cancer draping over the cervix.

That was why I had my total hysterectomy and bilateral oopherectomy at 43yo. I healed rather quickly from the surgery, but for me the more difficult part was getting thrown into immediate surgical menopause. I woke up one morning (about 4 months after surgery), feeling and moving like I was a 90yo woman -- knee, foot, hand pain. My doc said that estrogen (or the lack of it) plays a part in arthritis development, even though it's not acknowledged by most docs. Because of my BP, I couldn't take many of the common script anti-inflamatories. They made my BP go up to over 180/100, so I had to resort to Tylenol Arthritis strength.

The good thing is that now - 5 yrs out - I'm considered cancer free and have been feeling pretty darned good. My hot flashes have stopped and my joints don't bother me nearly as much (unless there is a weather change). I'm not taking daily Arthritis strength Tylenol anymore - just once in awhile. Since the cervical amputation shortened the 'area' down there a bit, hubby and I have learned to deal with that aspect, that along with the lack of hormones. It just takes a lot longer to 'warm up' to things.

There are a lot of things to consider above/beyond the surgery. Truthfully, I flew through the surgery and recovery. My hospital roommate (who also had the same procedure) and I were worried that as much as we were laughing, we'd rip stitches out. We had nurses stopping by to chat when they needed a 'pick me up' during the day because they said we sounded like we were having a slumber party rather than recovering from major surgery. I really think we were both giddy because each of our docs reported they were able to get all the visible cancer out, and the washes and margin inspections came back clean.

Tell your friend to check out Hystersisters.com. That site had a WEALTH of info, from getting through
pre-op stuff to healing and recovery.

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Response to Ecumenist (Original post)

Thu Feb 2, 2012, 06:59 PM

10. What a coincidence--recent news article

New Drug Treats Fibroids With Fewer Side Effects

Feb. 1, 2012 -- A new drug appears to be effective for shrinking uterine fibroids and controlling the heavy menstrual bleeding they often cause, according to new research from Europe.

In one study, the drug ulipristal acetate proved to be much more effective than a placebo for shrinking the non-malignant uterine tumors.

In another, ulipristal acetate was found to be as effective as monthly injections of the drug Lupron for reducing heavy bleeding in women with uterine fibroids. Both studies appear in the Feb. 2 issue of The New England Journal of Medicine.

Ulipristal acetate is the active chemical in the emergency contraceptive sold in the U.S. as Ella, but the daily doses taken by the fibroid patients in the studies were much smaller than those in the contraceptive.

If trials now under way in the U.S. prove positive, New Jersey-based Watson Pharmaceuticals Inc. and Swiss-based PregLem hope to market ulipristal acetate as a fibroid treatment under the trade name Esmya, says Watson spokesman Charlie Mayr.

http://women.webmd.com/uterine-fibroids/news/20120201/new-drug-effective-fibroid-treatment

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Response to Ecumenist (Original post)

Sun Feb 5, 2012, 07:22 AM

11. All I can tell you is the experience from my embolization of 10 years ago.

2 days in the hospital, only minor pain, 2 days staying upstairs (was advised against going up and down stairs), a few days taking it easy. I barely needed my painkiller once I went home. Was able to keep my hormones until natural menopause. In about a month I was back walking my neighbor's dogs (a long story) with little pain.

There's no way a hysterectomy could compare. It's taking out an entire organ with all of the complications of both surgery and recovery. I was told it would have meant about a week in the hospital and a month of recovery at home in bed by comparison. By comparison, my embolization was under the kind of anesthesia that an outpatient surgery (was it propofol?, I'll never know) and sedatives. But I was awake all day recovering, eating, and lying in bed with only minor incisions and an order to lie down and stay still for at least a day.

Embolization might even be cheaper since they are considered "outpatient" surgery.

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Response to divineorder (Reply #11)

Wed Sep 18, 2013, 05:32 PM

12. Embolisation

Hi,
I am cosidering having the treatment of uterine fibroid embolisation.
As you wrote, you underwent this procedure 10 years ago.
Could you tell something about the outcomes?
How are your fibroids now? What about their size? Did they regrow?
Sorry for mistakes, but I am not a native speaker of English ....
I would be grateful for any comments ...

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Response to Laptop2013 (Reply #12)

Wed Sep 18, 2013, 10:56 PM

13. Welcome to DU

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Response to Laptop2013 (Reply #12)

Thu Sep 19, 2013, 07:01 AM

14. Hi, I also had this surgery back in 2000

I first had two myomectomies (surgical removal of the fibroids) at Massachusetts General Hospital in Boston, excellent hospital, but the fibroids grew back both times. However, what embolization does is insert tiny beads in the arteries that feed the fibroids. That blocks the blood flow to the fibroids and they die. I was warned that I could have pain, but with the pain meds they gave me, I was just fine. The discomfort was minimal compared to my previous surgeries and I only had to remain in the hospital overnight.


The incisions that they made were so small that I didn't notice them at first. And though I had an anesthetic, they could wake me up if they chose. My fibroids were pretty bad, so I had three surgeries in seven years. But the embolization cured me for good, no problems since then and that was over ten years ago. I completely recommend it, since it worked for me. And your English is fine. Welcome to DU and good luck with your health issues.

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Response to Rhiannon12866 (Reply #14)

Thu Sep 19, 2013, 09:36 AM

15. Hi

Thank you very much for your message and support.
It makes me believe that the treatment is really worth trying

I have two fibroids- 2cm and 5cm large. They started to give me symptoms 2 months ago- heavy menstruation. But despite this, even earlier, when they were asymptomatic the doctor adviced me on hysterectomy, saying that the symptoms would appear and get worse in the future.

Considering this

* I am afraid that during the qualification for UFE they may say that it is too early for me or that I should wait for the symptoms to become more uncomfortable
* As I am 47, so I am also a bit worried about ovarian failure that may happen during the procedure

I would be grateful if you could comment on my doubts ...

Take care, and bye

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Response to Laptop2013 (Reply #15)

Thu Sep 19, 2013, 05:48 PM

21. All I can tell you is that it really worked for me

I had my first surgery in August of 1993 - and it was major surgery - and the fibroids had grown back by November. All they could offer in my small town was hysterectomy and that's why I went to a large hospital in Boston that offered more options. I did a lot of reading and was determined to avoid hysterectomy. My periods were debilitating, but fibroids were the only cause. Hysterectomy used to be the only option. My aunt had a hysterectomy because she had fibroids, but I was only 41 and was determined to find a better option.

I was so fortunate to find this doctor - a whole team, actually. I was their first uterine embolization and I had to check in with them by phone everyday, both before and after surgery, so they could track my symptoms.

I wish that I had known about this from the beginning, since major surgery is never easy. And I had a great many fibroids, of all types, but they kept growing back. Since I had the uterine embolization, I've recovered. The pain and the heavy bleeding never did come back.

Obviously, your doctor can tell you more than I can. All I can do is share my experience. Though I was warned I could have more pain, that didn't happen. The team I dealt with was great, very supportive, and I recovered much more quickly than I did from major surgery. I was really scared, so I can understand your feelings, but I'm fine now, after being miserable for all that time.

I don't know what makes someone a good candidate for uterine embolization, but I had to be an extreme case. I wish you all the luck in the world with this. I've been where you are, so I know what it's like. I truly hope that this can work for you, too.

Rhiannon

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Response to Rhiannon12866 (Reply #21)

Fri Sep 20, 2013, 04:50 AM

23. Thanks

Thank you very much Rhiannon for sharing your experiences and great support ...
Now I believe it is for me ...
Regards,
maria

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Response to Ecumenist (Original post)

Thu Sep 19, 2013, 10:58 AM

16. Have her

go to Hyster Sisters or the HERS foundation (think it's a dot org).

I don't know the pain or the consequences, because I have researched for that same reason, fibroids, and hysterectomy is just not the way for me to go. I think it's one of the most overused surgeries in this country. Too many other good options.

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Response to Delphinus (Reply #16)

Thu Sep 19, 2013, 12:58 PM

17. Doubts

Thanks a lot ...
As you have researched the topic .... could you comment on my doubts from the post above ..., please

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Response to Laptop2013 (Reply #17)

Thu Sep 19, 2013, 09:32 PM

22. Welcome to DU.

My doctor offered Uterine Artery Embolization as well - I'm a menopausal woman so I don't know if it would affect any of my ovarian function or not.

I read a lot about UAE and if I have to do something, this will be the route. Have you researched ablation? A friend of mine and I were talking recently and she said she knew so many women you had the uterine ablation.

I've also found that I could have the myomectomy - just need a bit more information about my fibroids before I can think about it.

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Response to Ecumenist (Original post)


Response to Name removed (Reply #18)

Thu Sep 19, 2013, 04:36 PM

19. Has anybody experienced any side effects of embolisation?

I agree that hysterectomies are overused these days. They are simply profitable ...

That is why embolisation could give hope for millions of women.

I am one of them and look forward to opinions making me believe that it will be the right choice...

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Response to Laptop2013 (Reply #19)

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