Regrets?? TAH/BSO for Endo-Cons?

Hi Hyster Sisters,
My questions for you is this:

Do any of you who have suffered with Endometirosis and had a TAH/BSO regret having it done?

I would like to know the cons of having this from your experiences.

Do the menopause symptoms match the pain of endo? Or are these just new problems to deal with less the endo pain.

I am 43, and scheduled for a TAH/BSO on July 31,
I would like to know if you feel you definitely made the right choice.

Everytime someone talks to me about this, it puts a question in my mind such as "You are creating new problems for yourself, and may still have endo pain afterwards. Just have another Lap and deal with it until natural menopuase which could be 10 years from now.

Do our ovaries produce a decrease of estrogen considerably after age 40? I have been going through peri-menopause for about 5 years now.

Maybe I should have a FSH level done and see. Is there a better time of the month to have this level done?
Thanks in advance.

Hi Teach2,

I just had a TAH/BSO 9 days ago. I had been suffering the effects of endo for 25 years as well as major fibroids. I can say that I have never felt better! I am not on HRT yet and don't know if I will go on it. My explained to me that endo feeds off the hormones and must have time to die off. She perfers no HRT for 3 months. As she put it, the surgery would be pointless if you started HRT immediately since endo can hide in obscure places. I am 38 and in surgical menopause. I can say the only "effects" I have felt are: night sweats and insomina, both of which I experienced prior to my periods.

The decision is yours and I suggest you lurk around here and ask tons of questions of us and your doctor. This is a major surgery that you must be ready to handle.

Good luck with your decision.

Lee

Thanks Lee,
It does help to here from other women who have gone through this.
I know it will be my decision in the end, but hearing from others talk about it does make you either confirm your decision or make you seek out more info.

Are you doing anything for your night sweats and insomnia?

Good Luck and prayers to you on your recovery.

Hi-
My mom had endo and had a hyst 20 years ago- no regrets at all.

I have a history of endo. Although they found none when they took out everything 2 weeks ago, I feel great- much better than before the surgery despite some post-op complications. No more abdominal pain, no lower backaches, and more energy.

I hope you get lots of responses. You may want to ask this question on the post-op board- more princesses check there.

Good Luck

Hi Diana,

I am hoping that after surgery, I too will be pain free of the back and endo pain. I also am having problems with my bowel and bladder. Hopefully this will all be taken care of next month.

Good Luck with your recovery.

I did post thisin another board, but the wrong one so our Hyster sisters moved it here.

Thanks for responding.

I also suffered from severe endo. I had my hyster 3 weeks ago and I can say that this is different. This pain is a healing pain no burning no pulling. I know that it will go away. My doc also said that if it did come back that it would not be as hard to laser off. I am also on hrt for the reason that I am only 25 and was having terrible hot flashes and mood swings with the endo. So far I feel much better my energy is back no hot flashes and few mood swings. Now since you are older you may not need hrt that may make you feel even better. I can only hope for you. Good Luck!

Aye, aye, aye, aye..... okay, stop makin' me think here. LOL.. just kidding. It is truly a good question, and I have questioned myself many times. I haven't been suffering nearly as long as many of the gals on here, but am feeling it full force! It's been getting worse and worse for me on a daily basis since February. I'm scheduled just before you are, on July 14th.

This whole thing is soooo strange for me. My periods really aren't that bad - I used to not even get them at all! Till BC pills, then the migraines came along with that. But this continual, horrible back ache that never stops is really the pits. I just finished my final period, and yet here I am, having constant cramps, too! You know, ever since getting off the BC pills, I just sweat like crazy. I am wondering if that is part of the whole thing, or what?

Am I going to regret this decision? I don't think so, and certainly hope not. I have had soooo many people tell me that I will feel sooo much better! And these are gals who have all had the hyster, too. Some of them had to work with the hormones for a while, just to get them adjusted to the actual correct strength. That type of adjustment will be nothing new to me - I've been to the doc more times than any one person could count to with the constant adjustment of my throid meds... actually about six years of adjustments. It bounces around like nobody's tomorrow - so now I'll just get checked for both at the same time!

I guess the best thing for me is to try to keep my humor up, try not to overwhelm the entire day with my whining and complaints to my DH, and to look forward to a new beginning. I am truly hoping that having a steady level amount of hormones will be easier on my headaches... I had a doozy at my office on Wed, and still had to deal with clients at the same time. I was gulping down advil and trying to keep what my client said straight!

Again, I realize there are some women out there who have problems with this, but every face to face person I've talked to has been really happy with their decision. Medical technology has advanced so far these days!

Good luck with your decision. If you have second thoughts, keep coming back here to read, and talk with your doctors/nurses about it too. They should schedule appointments specifically for talking. That's why we pay them so much. I'm right there with you and understand completely the, do I? or don't I? question.

Hugs!
Lisa

Oh yeah... one more thing...

All this cramping... is it truly the endo getting me, or is it the adeno? I've asked about hormone levels before, and no one has seemed to interested in doing a test on them for me.

I certainly sweat like crazy when I'm off the BC pills, but when I am on the pills, my temperature is fine, but zero sex drive. It was amazing to feel the sex drive come roaring back once I decided no more migraines - I'm off those pills!!!

I'm thinking about NO hrt! We'll see!

Lisa

Oh, boy, where to begin??

I've had severe endo, probably since I was 16, and although my surgery wasn't specifically to eliminate it, part of my decision-making process was keeping endo in mind, from the very beginning.

We actually thought, at the time of my surgery, that I had ovarian CA, and the hyst wound up being for that. Originally, when the large mass was found, I thought that a laparoscopy, with a two-week recovery period, was what I was in for. When my doctor said, "hysterectomy" I was shocked. But years of endo, multiple surgeries for various emergencies, and adhesions, left everything fused together anyway. So a hyst wasn't a "choice".

I did discuss keeping one ovary with my GYN-onc. Her take on it was, "if you formed a cyst this large once, even if it isn't cancerous, you're likely to have it happen again on another ovary within a year." I was 47, with a young child and three demanding part-time jobs, and after doing my research, felt that my best bet was to have both ovaries removed. It was made clear to me, BTW, that in the setting of severe endo/adeno, and adhesions, ovarian tissue could in fact remain (something that we now suspect has happened). But I still felt that my best shot at good health was to take everything possible.

I researched my HRT choices very carefully, and went into the surgery with a somewhat clear picture of what I'd need hormonally to attempt to eradicate the endo. I did take bio-identical progesterone (in the form of Prometrium, thinking about changing to compounded capsules) from the very beginning. One thing I noticed right away -- the extreme PMS I'd gone through previously was GONE. Sure, I still have my "moments" (my DH, in fact, just the other night told me, "your attitude s***s") but it's nothing like the days on end like I used to have. I used to plan vacations, not around periods (which were difficult enough, with the adeno) but around my moods which were completely unpredictable.

Checking an FSH is a good idea, but do keep in mind that other hormone levels are often way out of whack in those of us with endo. It interferes with the chemical breakdown of estrogens, so knowing your estrogen level pre-op isn't really all that useful. As far as when to check FSH, I did it immediately after the start of my period (within five days, I think was the limit).

It's impossible to know what the right answer for you is. Some women go right onto estrogen afterward and do fine; others have waited it out for a period of some months; and still others wind up doing no estrogen forever. However, there are other hormones that many of us find helpful, like progesterone and testosterone. And there are always trade-offs.

Remember, too, that endo is in some ways a systemic disease. It's an inflammatory process, so anything you would do to reduce inflammation and take care of your general health, dietary, exercise, etc. is always worth doing. You might also wish to get a second opinion from a GYN-onc. I wound up with one anyway, thanks to a high CA-125, but for those of us with endo, my "regular" GYN surgeon felt that the oncologists were better equipped to do whatever complicated surgery (for example, if there's intestinal involvement) might be necessary.

I see your point about doing "another lap" -- but each surgery creates its own adhesions and new blood supplies for endo. As I lurked some of the endo boards, that message came home again and again. The older you get, the more of an opportunity for endo implants, too.

I can't say that I regret my hyst -- getting rid of the adeno pain alone was worth the price -- but I didn't expect to be trouble-free afterwards, either. I certainly don't have the pain levels that I had before, but there are some adhesion-related issues that I still deal with. There are certainly changes with the menopause, but the more you're used to being in tune with your body's needs, and the healthier lifestyle you lead in general, it may not be as huge an impact as you'd expect. I felt much better in those first three months after my surgery, that's for sure! Anemia and adeno had taken their toll, as well as the giant "alien" that had taken over the real estate in my pelvis.

A key thing may be to be realistic in your expectations -- and do your hormone research, both in the Hormone Jungle and other websites; a personal favorite for pre-op HRT research was a website called Survivor's Guide to Surgical Menopause .

Remember, also, that many of the ladies who post on the Road Less Travelled are those who've had complications; it's only a very small percentage of the large numbers of ladies here who have their surgery and go on to lead healthier, pain-free lives! Endo is very difficult, but in the right surgeon's hands, and with some judicious HRT "tinkering" hopefully it can finally be treated and made manageable.

Best wishes on this journey, and s. Good for you for doing this research! Sometimes I'm actually glad I was not confronted with the choice that you have to make -- the cancer issue overrode any concept of "choice". But I'm glad it's over, and exceedingly glad that I no longer have periods!

BTW, for what it's worth, I did keep my cervix; don't know if it's made a difference for me, but it was the one choice I was able to make.

Audrey

TO FREAK,
Age 25 is so young to have to go through what you did. I am so sorry. I hope your future holds great promise for you princess, and pain free.


TO LISAJAMMI,
Good luck and prayers to you on your upcoming trip to the castle.
I guess we all have our story to tell, huh! It wonderful and conforting to have come across this site and all of you womderful HysterSisters.

I am hoping my Migranes, (which I have suffered with all my life) will decrease. I have talked to women and it has been a 50/50 across the board on that one. I too suffered this week with a migrane which lasted 2 1/2 days.

Yes, Humor is the way to go. It is true that it is up to us to make the final decision.


I am not going to go on any HRT/ERT at the moment. I am hoping to be able tohold off or go the natural vitamin way.

We do know our bodies and will make the right decison.
Thanks for sharing your thoughts and feelings.


TO AUDREY
WOW, you have been through alot. Thanks for the info on the hormone levels too.

I am going to set up a appointment before my pre-op to discuss these issues.

I thought that the info on the adhesions after laps was interesting.

I am still learining about the different areas info to tapping into the right area.


Ladies thank you so very much for answering a difficult question that lies ahead for me, and most likely for many of you.
God Bless,
Colleen