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View Full Version : Hysterectomy for Endometriosis & Adenomyosis? UPDATE - Post 13



ReeseTheBeast
Feb. 22, 2013, 06:22 AM
Anyone had this done?

Thoughts, experiences, stories, results (the good, bad, and ugly)?

Facing this next month (uterus will be removed and ovaries will be left) and I wanted to get some input from others who have experienced it.


Thanks in advance!

Janet
Feb. 22, 2013, 08:01 AM
No reccomendations, but my deep sympathy. My mother suffered from endometriosis for many years.

In her case they did the opposite, removed the ovaries and kept the uterus. It worked for her, but this was back in the late 60s.

grayarabpony
Feb. 22, 2013, 08:13 AM
Hysterectomy will get rid of the adenomyosis but may not help with the endometriosis. Often removal of the ovaries and no replacement hormone for at least a month is necessary to get rid of endometriosis.

ReeseTheBeast
Feb. 22, 2013, 08:43 AM
thanks for responding, guys.

I am aware that not removing the ovaries means that the endometriosis can (and likely will) come back.

However, I am planning on managing that by taking birth control pills continuously (as in, never having a period again) to prevent ovulation entirely. While this management method is still no guarantee that the endo won't come back at some point; it's the best option for me (I can't deal with the side effects of many of the other hormonal treatment options due to having bipolar disorder- I seriously can't risk my mental balance/health to being bombarded with tons of hormones which have been proven to cause depression in some/many patients).

the reason I'm having the uterus removed is because of the constant pain of the adenomyosis... to experience all of those symptoms on a constant basis (literally, it's all day, every day; no wonder I'm crazy! :)), is indescribably horrific. And to me, my quality of life is more important than being "whole" (if that makes sense).

I was already told at 18, after my first laparoscopy-hysteroscopy to treat the endometriosis; that I was/am "almost definitely" infertile, due to the damage that the endo caused to my fallopian tubes and everything else. Same conclusion after the 2nd surgery I had at 20. So I'm at peace with my decision to go through with having my uterus removed, even though I'm only 31.

I just hope that I don't end up regretting it down the road: although I have learned through extensive research and regular interrogations of my surgeon and GYN that there are really no long-term negative effects of having the procedure done (other than the possibility that the endo might come back due to the fact that I'm keeping my ovaries); I still wanted to reach out to my fellow COTHers- many of whom I know have gone through/are still going through their own hell and back with endometriosis and adenomyosis- to get some additional feedback.

And Janet, your deep sympathy is deeply appreciated. :) I've never had a "poor me" attitude about any of this; but now that I'm facing having to do something so drastic, I do admit that it's more upsetting and bothers me more now than it ever did in the past. And I've been dealing with this crap since I was 16!

carolprudm
Feb. 22, 2013, 08:58 AM
I suffered from adenomyosis for years(and polyps, fibroids and cysts). In 2002 all h3!! broke loose, I was bleeding so heavily the surgeon wanted to give me 2 units of blood. As much as I tried to avoid it I had a total hysterectomy in Nov 2002. It took a few months but all of a sudden I realized "Hey, I feel great" something i hadn't felt in years.

My surgery was complicated because of adhesions from my 3 Csections.

grayarabpony
Feb. 22, 2013, 09:02 AM
Reese sent you a PM.

Freebird!
Feb. 22, 2013, 11:28 AM
have both Endo and Adyno, and I feel your pain - literally. (((hugs))))
First, there are a few things you need to keep in mind, when making your dicision:

A Hyst will cure the Adyno, but the Endo will come back, Hyst or no Hyst, with or without overies. Your best hope for treating the Endo, is getting it Excised during the Hyst.

Though new, this is a great website, full of Dr Redwine's research: http://www.googlingendometriosis.com/endopedia/index.html
Until he recently retired, he was one of the best Excision specialists.

Larksmom
Feb. 22, 2013, 11:36 AM
I had a hysterectomy a couple of years ago. I had uteran(?) cancer. No pain, just odd symptoms. It was done, and I told them to take EVERYTHING out. If you leave the tubes, could you not still get cancer? If there is no hope of pregnancy, wouldn't it be best?
And by the way, although I am not a worrier about this sort of stuff, I was a bit concerned about this. It was almost like a dream. I didn't feel great, but they did have me doped to the eyeballs for a few days, and I was fine. You will be too.:encouragement:

I was very blessed. I didn't have to go in for follow up, like chemo or anything like that. Still had to go to the 'don't touch me there' dr for a few years....

grayarabpony
Feb. 22, 2013, 11:40 AM
the Endo will come back, Hyst or no Hyst, without ovaries.



Actually it's pretty rare for endometriosis to persist if the ovaries are taken and there's no HRT for a period of time so the implants can die off. But the OP has chosen to keep her ovaries anyway and use hormone treatment (BC) and at 31 that sounds like a good idea.

Freebird!
Feb. 22, 2013, 11:59 AM
Actually it's pretty rare for endometriosis to persist if the ovaries are taken and there's no HRT for a period of time so the implants can die off. But the OP has chosen to keep her ovaries anyway and use hormone treatment (BC) and at 31 that sounds like a good idea.


Here's a much better explanation then I could ever give:
http://www.googlingendometriosis.com/endopedia/treatment21.html#8.

Implants don't "die off". :)

grayarabpony
Feb. 22, 2013, 12:18 PM
Actually your link proves my point.

Such as: http://www.ncbi.nlm.nih.gov/pubmed/7589631

"Of those with ovarian preservation, 18 of 29 (62%) had recurrent pain and 9 of 29 (31%) required reoperation. Of those who had no ovarian preservation, 11 of 109 (10%) had recurrent symptoms and 4 of 109 (3.7%) required reoperation."

And yes, the endometrial implants do die off, or certainly regress, if starved of estrogen. Endometriosis doesn't usually (perhaps ever?) make its own estrogen, and one would have to have a pretty large amount of body fat to convert enough testosterone to estrogen to sustain endometriosis if the ovaries were gone.

But again, if I were the OP's age, I'd be looking for non-surgical ways to deal with the endo at this point. Having the ovaries taken at 31 is pretty darned drastic.

Freebird!
Feb. 22, 2013, 07:43 PM
OP - Where are you located? At your age, I would do everything you can tonat least keep your Ovaries. The Hyst will cure the Adeno. Removing the Ovaries may help the Endo, but it may do nothing at all. Plenty of women continue to have pain while pregnant, on BCPs, and even after Menapause. Endo implants have their own Hormone receptors, which is why even a full Hyst, won't cure it. Right now the Gold Standard for treating the disease, is finding a Dr who specializes in cutting - not just burning the superficial disease - ALL of the disease out. This can be done during your Hyst.

For sure continue to research, but keep in mind that there are so many musconseptions about the disease - like that it can spread, or that it is caused by retrograde menstration, etc. Even most Gyns will tell you things like Pregnancy can cure it, and alblation works just as well as excision....just to name a few.

The Endometriosis Research Center is a good place to start, as is the link I posted above. I started a thread over on the Riders with Disabilities Forum, that has quite a few good links in it.

The bottom line though, is that it is your body, and your decision - not your Dr, or friends, or family....or BB members. ;).

ReeseTheBeast
Apr. 2, 2013, 06:27 AM
Update:

Had hysterectomy (uterus and cervix removed) on March 11th.

Doctor said I would be 100% within 7 days. Yeaaahh... no. It was more like 14; and I'm still not quite 'right.'

I had some minor complications coming out of the anesthesia; which I've never experienced before... those were pretty scary; but I'm glad they were short-lived.

Interestingly, endometriosis was only found in one place- the pelvic cul-de-sac... that surprised both my doctor and myself, considering the severity of the symptoms I had been having prior to the surgery. I mean, the lesion was hella big; but I've had bigger in the past, and more numerous, with the same-lesser degrees of symptoms. She told me that they removed that lesion via fulgration; which confuses me, because during my pre-op appointment she was adamant that cutting the lesions out is 'the only way to go' these days, and that laser ablation/other methods of 'burning away' lesions to treat endometriosis is essentially obsolete. I mean, I'm not complaining or anything, I'm just surprised is all; and of course, curious as to the reasoning behind it.

The surgery required 2 incisions: one through the belly-button and one through the lower abdominal wall/on top of where my uterus was. The Dermabond (medical-grade Krazy Glue) was supposed to stay on for 2 weeks, but it fell off of the lower abdominal incision after less than a week. That particular incision is quite red and somewhat sore. It's also very 'lumpy' underneath, which isn't something I've ever experienced with any of my previous laparoscopic procedures in the past.

It will take time for the incisions to heal, I know. But I've got a list of questions to ask her when I go in for my follow-up appointment tomorrow... like:


Why was fulgration used to remove the endometriosis lesion found during surgery, vs. excised?
Why am I still having cramps (like I did when I had a uterus)?
What's up with the red, lumpy incision?
What did the nurse in Recovery I mean when she told the nurse from Recovery II, "most everything they removed from [me] was benign"? **
What did you [the doctor] mean when you came into Recovery II and said, "I'm really glad you decided to have your uterus removed. We'll talk about it at your follow up." **
Why did my uterus look so large and red in the photos taken during the surgery?*
Why do my ovaries look so weird in the photos taken during the surgery?*


** These two points in particular have got me a little nervous, I have to admit...:uhoh:

* In pictures taken during past surgeries, my uterus and ovaries did NOT look anything like the pictures from this surgery... I wish I could find those old pictures for comparison, to show the doctor... :confused:

Has anybody else who has undergone this same procedure had any of these same kind of issues or concerns?

I of course have tons of other questions, which I will ask during my appointment tommorrow; but wanted to update you kind folks who offered me so much support and information during the last OT day :) Thank you all so much for that; and if you have any input/thoughts/feedback WRT this post, please feel free to share :yes:

If OT day is still open tomorrow night/Thursday AM (pretty please, Mods?), I will report back with the answers to my questions and any other relevant info I find out at my follow-up appointment that may help anybody else out there who is going through this kind of thing.

Thanks again to all of you... as always, COTH is the best. :encouragement:

sketcher
Apr. 2, 2013, 06:43 AM
Fingers crossed for you that all the above was due to the diagnosis you had going in and not something new and scary.

ReeseTheBeast
Apr. 2, 2013, 06:45 AM
Fingers crossed for you that all the above was due to the diagnosis you had going in and not something new and scary.

thanks Sketcher... me too!!

dudleyc
Apr. 2, 2013, 07:49 AM
I'm an OB/GYN

Why am I still having cramps (like I did when I had a uterus)?
It could be still part of the healing process - I generally tell my patients that it takes 6-8 weeks to heal 95%, but they will be feeling pretty good after a 7-10 days. It also could have nothing to do with your GYN parts, the descending and recto-sigmoid colon are located in the pelvis and can mimic pelvic pain. Gas pain is increased with surgery and narcotics

What's up with the red, lumpy incision?
probably lumpy from sutures located underneath the skin - these sutures are resorbed slowly.

What did the nurse in Recovery I mean when she told the nurse from Recovery II, "most everything they removed from [me] was benign"? **
This is not a correct statement, the pathology will take about 3 days. Nurses like everyone else sometimes say weird things that are nonsensical and should be disregarded

What did you [the doctor] mean when you came into Recovery II and said, "I'm really glad you decided to have your uterus removed. We'll talk about it at your follow up." **Talk about it on follow-up.

Why did my uterus look so large and red in the photos taken during the surgery?*
Why do my ovaries look so weird in the photos taken during the surgery?*
I'd have to see the pictures, but they are usually magnified and the uterus is big and red and ovaries are really weird looking

ReeseTheBeast
Apr. 2, 2013, 08:34 AM
Thank you so much for your reply, dudleyc!! Very useful info. And of course, I plan to discuss all of this tomorrow with my doc at the Follow-Up appointment, but very much appreciate your input, and the input of those who have "gone before me," as it were. :)

trubandloki
Apr. 2, 2013, 09:04 AM
I had my uterus removed laparoscopically (I had what was described as a huge fibroid and a bunch of polyps).

Weird cramp like pain seems to be not abnormal (per what I was told). I was told as Dudleyc said, gas pains from the surgery and the medications.
Lumps under the incision too as Dudleyc said, from the stitches that are below the skin. I was told that the glue and tape needed to stay on as long as it stayed there. If it came off on its own not to worry about it.

I saw the photos of my uterus and all kinds of various internal organs at my follow up appointment. I have to say everything looked big and red and funky.

Hope you are feeling 100% soon and that your appointment will clear up all your concerns.

grayarabpony
Apr. 2, 2013, 09:40 AM
Your doctor said you'd be 100% in 7 days?? Are you sure you heard him or her right, because that's never happened. lol

Complete (internal) healing from a hysterectomy actually takes about 6 months. So take it easy and do not be worried there's anything wrong if recovering from the surgery takes time. Usually within 2 months people are back doing most of their normal activities.

The uterus may have just looked large from the photos, but adenomyosis can cause the uterus to enlarge. My thought is that the doctor thought removing the uterus was good is because there was a lot of adenomyosis.

Auburn
Apr. 2, 2013, 10:22 AM
I struggled with endometriosis for years. Over the span of 12 years, I had 4 lazer laparoscopies and 1 lazer laparotomy to remove the lesions and scar tissue, so that I could try to get pregnant. It never happened.

When the pain finally got so bad that I was bedridden for 3 days out of every month, I had everything taken out. Because I was such a mess inside, with adhesions causing a lot of my organs to be stuck together, the approximately 2 hour surgery that my Doctor had told my husband, turned in to a 4 1/2 hour surgery. The Doctor had to do the bikini line cut, because so much had to be done inside of me. He never found my right ovary, so just removed the left.

I was told not to lift anything for 3 weeks. It took awhile for me to want to get back on a horse.

Having the procedure greatly improved my quality of life. Not being able to have biological children was something that took me a long time to reconcile. We ended up adopting two boys from Brasil.

OP,
Give yourself how ever long it takes to let your insides heal. I pray that your Doctors visit goes well. :yes: I was not a candidate for HRP, because of my familial history of breast cancer (Mom and her Mom). If the hot flashes start, then your freezer will become your next best friend. ;)

trubandloki
Apr. 2, 2013, 11:32 AM
Your doctor said you'd be 100% in 7 days?? Are you sure you heard him or her right, because that's never happened. lol

Forgot to comment on this before. I agree with this.
Maybe the doctor said you will feel 100% better than you did at that moment in 7 days, not that you would be 100% in 7 days.

I had a pretty routine (no complications) surgery and I was told no lifting anything heavier than a gallon of milk for six weeks. Thinking if you are supposed to be 100% in 7 days they would not put those restrictions on you.

ReeseTheBeast
Apr. 2, 2013, 11:52 AM
RE: the questions as to whether I heard the doctor correctly when she said that I should be fine in 7 days- yes, I am absolutely sure I heard her right! She said that I would be fine to return to work and most of my normal activities within a week of the procedure.

Actually, based on the post-op instructions I was given, I should have been up and moving around as much as possible after the surgery... which, btw, was completely impossible- I was in a HELL of a lot of pain.

Here is an excerpt of the post-op instructions document I received (which also echoes what the doctor told me)... the text highlighted in blue is my emphasis:
What should I expect immediately after surgery?

Activity
There are no standard limitations with regard to activity after laparoscopic procedures except for driving and sexual activity (see below). In general, use common sense when deciding what activities you are willing to perform after surgery. Every patient is different, and different patients will have differing degrees of recovery. Gradually advance your activity. You should NOT be bedridden after these procedures. Continued movement and increased activity back to normal will prevent prolonged recovery times.


Stairs
Apprehension about stairs or weakness in mobility requires help when climbing up and down stairs. You are allowed to use the stairs if you feel able.

Lifting
There are no restrictions for those patients with 5 or 10 mm incisions. (<-- My incision was about 5mm) For larger incisions, use caution immediately after surgery. Start with no more than 15lbs.

Exercise
Exercise is highly encouraged after surgery, since it allows for faster return to normal function, and also helps with pain (exercise causes release of natural morphine type compounds in your body).

grayarabpony
Apr. 2, 2013, 07:22 PM
Those are some strange unrealistic recommends.

Don't let them get to you. lol It takes TIME to heal from any sort of abdominal surgury, even with a lap, because you have a lot of healing to do on the inside!

carolprudm
Apr. 2, 2013, 07:32 PM
RE: the questions as to whether I heard the doctor correctly when she said that I should be fine in 7 days- yes, I am absolutely sure I heard her right! She said that I would be fine to return to work and most of my normal activities within a week of the procedure.

Actually, based on the post-op instructions I was given, I should have been up and moving around as much as possible after the surgery... which, btw, was completely impossible- I was in a HELL of a lot of pain.

Here is an excerpt of the post-op instructions document I received (which also echoes what the doctor told me)... the text highlighted in blue is my emphasis:
What should I expect immediately after surgery?

Activity
There are no standard limitations with regard to activity after laparoscopic procedures except for driving and sexual activity (see below). In general, use common sense when deciding what activities you are willing to perform after surgery. Every patient is different, and different patients will have differing degrees of recovery. Gradually advance your activity. You should NOT be bedridden after these procedures. Continued movement and increased activity back to normal will prevent prolonged recovery times.


Stairs
Apprehension about stairs or weakness in mobility requires help when climbing up and down stairs. You are allowed to use the stairs if you feel able.

Lifting
There are no restrictions for those patients with 5 or 10 mm incisions. (<-- My incision was about 5mm) For larger incisions, use caution immediately after surgery. Start with no more than 15lbs.

Exercise
Exercise is highly encouraged after surgery, since it allows for faster return to normal function, and also helps with pain (exercise causes release of natural morphine type compounds in your body).
Your GYN has probably not had much experience with equestrians

uphill
Apr. 2, 2013, 09:45 PM
Do lots of research, ask lots of questions, seek 2nd opinions.

15 yrs ago, I was diagnosed with Anal Cancer.It took them 9 mos to figure it out! I had a clean Pap... Then 10 days later getting a 2nd opinion...my anal tumor was twice the size ( prob. measured incorrectly originally..which meant it was 'staged' incorrectly as well) ...and I had invasive cervical cancer ( now that didn't develope overnite!! and it would have killed me being undiagnosed and improperly treated.

I had a hysterectomy with removal of ovaries, tubes and the omentum . Current GYN doesn't know why the Omenectomy as it is used in Ovarian cancer not Anal/cervical. I don't care, I don't miss it and I'm alive!

I had had Endometriosis all my young adult life. had a D&C . Never had any issues after.

After the operation...I had chemo and radiation concurrently ( Nigro) which enhanced each other. Burned my 'saddle contact area' and I couldn't ride for 2 yrs and still have to be careful. But I am alive.

Follow your gut, do the research and ask the questions. Get a 2nd opinion it may save your life! I went to Boston MGH ending up JUST where I needed to be with Dr. who was the expert in a cancer that they didn't know anything about locally. {Angel?}

best wishes!!

fooler
Apr. 2, 2013, 10:10 PM
I had right ovary and Fallopian tube removed 10years ago due to rather large cyst. Plus I had less impact on my body prior to surgery than you. My DR said 2 weeks before returning to "desk job" and essentially 4 months to START feeling normal. He also noted all of his patients fell into this time range, some a little quicker, some longer but that is the average time.
What is hard to reconcile is that externally the "holes" will heal quickly and you will look healed. But the internal healing takes much longer. Think of yourself as a horse on stall rest that has to return to slow work:lol:
Please keep us posted with your progress!

trubandloki
Apr. 3, 2013, 08:29 AM
Well said, Fooler.

I got permission from my doctor to go back to work after two weeks and it was only given because my job is mainly a desk job.
I was told no stairs too.

It was explained like what Fooler said. You will feel much better but your insides are still healing and overdoing it might make problems that lead to longer term issues.

Heck, I was not even allowed to vacuum for six weeks. (Best restriction ever.)

Now the being told to get up and move around does not surprise me. That I was told too. They want you moving. Moving around helps move the gases and gets your body going again. Simple walking is probably one of the best things for you.

LexInVA
Apr. 18, 2013, 10:10 AM
Give us an update!