Big Surgery Decision..or Not For Now?

[Sophia3]

Ok, went in for consult for endometrial ablation, AFTER talking myself out of it. Just to get info.

Did TVU and saw things on the ultrasound monitor...polyps and fibroids lining the uterus. So I guess I WILL get the surgery and he can scrape away the fibroids.

OR he can laparopscopic do hysterectomy to just get everything over with. I don't believe my ovaries are that strong and would be starved more so by surgery. (My endocrinolgoist ANS doc thinks this is an issue due to tubal ligation 20 years, they can caused lack of blood flow to ovaries)

So then surgeon said we could yank out ovaries and put me on estrogen. Well, I have MULTIPLE CYSTS problems in breasts with NUMEROUS aspirations and one benign tumor removed and then 1/4 cup of tiny cysts the size of bb's! So I DO NOT WANT ESTROGEN.

THEN since I have OSTEOPENIA, doc suggested these gawdawful "bone building meds" that are too new and very risky and can cause esophageal damage. NO THANKS.

So I also know the unknown fluctuation of female hormones can continue to haunt me with just the basic surgery and ablation and even the lap hyst.

HOWEVER, the doc mentions I will be in menopause in another 3 years so why not just take it all out now. (SPOKEN like a true surgeon though I do like this guy and no the nurse working for him and she thinks highly of him)

HOWEVER, what has kind of haunted me since seeing Dr. Grubb is this: He knows my history of being in bed so much yet using the time to rest and push to do basic things and sometimes bigger things (walks, exercise and such) He also said the female hormone connection though not understood fully by anybody (WHICH IS TRUE IN ALL FIELDS OF MEDICINE) is vital in often HELPING with ans issues.

Dr. G said "expect things to change after menopause, probably for the worse"

Well, folks that used to post at other boards WERE WORSE after menopause, in wheelchairs, or more bed bound than I am currently. So Dr. G could be correct but could be wrong. There is no guarantee.

So as my breasts sit here BURNING SORE in my PMS mode, removing all estrogen sounds tempting. But as I walk around the house the last few days with full blown mini bouts of vertigo and walking drunk and dizzieness, I am perplexed.

I NOW there is no TRUE ANSWER. But a part of me feels like if I go for the Big Hysy and bilateral oopherectomy, I could be jumping from the pan into the proverbial fire.

While many others have had hysterectomies, how many have been in the middle of the NIGHTMARE of horrible, debilitating O.I. issues and had the surgery.

And if you were in a situation w/o ability to take estrogen, how did you do? I know cancer pts can't take estrogen. Anybody here in that situation.

THEN I have a horrible varicose vein issue of the uterus causing what sounds like to me Pelvic congestion syndrome.... he can examine in surgery. But that has to be treated with RADIATION!! YIKES.

so when you feel this putrid, I guess I will go with the least evasive solution for now??????.

But I also know my ANS doc has seen women with hysterectomies RUINED because they CAN NOT HANDLE ESTROGEN SUPPLEMENTATION.

Sheesh. Sorry to write so much but how the **** do you make the right choice?

[Guest Belinda]

Geez Sophia..my throbbing nose and your lumpy breasts...sounds like the papers that you look at when you go to the supermarket..like michael Jackson gives birth to twins... oh whatever..I am sorry for your ordeal don't know much to help you but osunds like a really tough decision in whatever you decide..

YUCKY...

Hope someone can help you ...Belinda

[MightyMouse]

Sophia, there are some newer procedures for fibroids where they basically cut off the blood supply to tumors, and the tumors die off and are absorbed back into the body. My best friend had this when it was still experimental, and she did great.

As for bone mass building, there is a bone drug that you can use via nasal spray. I'm only 4 foot 11, so for me, I'd rather risk my nose being irritated than shrinking and/or breaking my already decrepit bones. Just my opinion on my own body--you have to do what's right for you.

You and I got the same speech for Dr. G about post-menopaosal worsening of symptoms. If it were me, I'd probably want to hang on to my uterus and ovaries for as long as possible. I mentioned in the chit chat forum that I've been having a multitude of gyn problems--and my doc has been preaching hysterectomy to me for the past 6 years. I'm still saying no--I'd like to keep my natural sources of hormones intact as long as the universe is willing to allow me to do so.

I hope you make the choice that will serve you and your health in the best possible way. Perhaps this might be a time to call up to Dr. G's office since you've been a patient and get an opinion? Just a thought.

Nina

[Sophia3]

Thanks, I thought about calling Dr. G but haven't seen him since 2001.

I used to have his private email but I think it is on my 11 year old disconnected computer.

I somehow found it and he always responded to the two emails I sent.

I am afraid to email my ans doc with all this stuff tho he is VERY CONSERVATIVE surgery wise and would probably vouch for just the ablation (that he thought was a good idea)

If I sent all these questions in an email, he probably would only try to answer them all with a court order!! Ha.

But I am sore from the TVu and mad I couldn't relax to have the hysteroscope to give the doc more feedback. But he didn't want to hurt me..or for me to kick him!!!

Oh, in a bit of irony, this doc/surg I am now seeing, has taken over the pts of my late brother in law's practice..back when he retired after a heart transplant. I have a good feeling about him.

[Guest sonotech]

I have worked in GYN offices for many years actually performing the TV ultrasounds, and what MANY women dont realize is that FIBROIDS are "fed" by hormones. The fluctuation of normal monthly hormones is what can cause the fibroids to grow, sooo........................

most women, if they make it to menopause with the fibroids (and their female organs), the DROP in hormones usually cause the fibroids to shrink and even sometimes degenerate and "go away".

From what I have seen women go thru, I would put off surgery (if possible) and see how you respond after menopause because many studies show that women do BETTER when they dont have the hysts.

My mom had a hyst and was put on estrogen for several years, and then was diagnosed with breast ca. When she stopped taking the hormones she went thru a prolonged period of menopausal symptoms and said it was rough as opposed to women who go thru "natural" menopause which can vary from one woman to the next, but many describe it as "tolerable".

So to sum it all up, it seems that the longer you can hold off on surgery the better, and just remember that the fibroids CANT grow after menopause and will more than likely shrink quite a bit.

LAURA

[Sophia3]

yes, I think I am leaning to the minimal surgery...the getting rid of the polyps, and the ablation.

and let the uterus stay intact.

Yes I am VERY familiar that hormones feed fibroids and NOT To mention the HORRIBLE pain it causes in my breasts. My mom had a radical mastectomy 50 years ago the breasts cysts were so horrible and PAINFUL.

Mine aren't that bad but do NOT respond to Vita E and diet. Just too strong a genetic link which is why I wouldn't do estrogen supplements. The surgeon said he can give estrogen creams to keep vagina healthy but I would probably get the compounded stuff in lowest possible dose if I have to look at that.

So to get rid of estrogen sounds GREAT as far as breast cysts go...though this month I am taking low dose prometium to balance out things...a few months ago progest was zero and I can't handle most progesterone but the prometium is ok...

Course, if we KNEW leveling out the playing field of hormones would help ANS, I might be tempted to just got for the whole 9 yards.

But now I can get the surgery and get a TVU next year to keep eye on things. but this kind of explains my discomfort!!!

I will just superhydrate with Gatorade and salty snacks day before ablation deal!!

Worry about the more invasive stuff down the road.

BUT I am THRILLED this doc does the hysterectomy via laparascopic surgery!!! MUCH easier on the body. I can't imagine dealing with cut abdominal muscles on top of O.I. junk

thanks for the replies...to all of you.

[Be Still]

I'm sorry you have this big decision on top of everything else. With time, you will make the choice that is right for you.

If it's considered that your estrogen is currently compromised, what about trying a little estrogen now, before any surgery to see how you handle it?

Best wishes for relief!

[Jersey Girl]

Hi there! I have been going through similar issues the last few years. I have had two d&C's which were done very quickly under general anaesthesia. I told the anesthesiologist that I was most likely to volume deplete so they increased the IV fluids for me and got extra time in the recovery room. I was hesitant to try the newer ablation procedure because I believe it involves very hot water and I react poorly to temperature changes. I couldn't tolerate any of the perimenopausal hormone treatments I tried and have been in the waiting game for my cycles to finally end. Sorry you are facing this now. Martha

[sally]

Hey Sophia,

I'm right there with ya in the same boat, was told about ablation for bleeding and fibroids etc. They told me that I along with fibroids also have adenomyosis (from symptoms) and since the only sure way to diagnose and or cure those is hysterectomy, suggested that or abalation to see if it would help the bleeding issue. OR, wait for menopause, no hormones - no more problem per doc. So, here I sit waiting for that to happen, tapping my fingers....... As long as cancer is not an issue, I personally prefer to wait for meno to happen unless things get worse that is.

for myself, I've not decided on the ablation as yet, I was told that it would not help with the pain but would with the bleeding issues.

Boy, what we women have to go through! Good luck to you in which ever decision you choose.

[BuddyLeesWife]

I had fibroids that caused severe bleeding resulting in anemia - I struggled with this for 9 years. In 1996 I had a myomectomy where they remove the fibroids and rebuild the uterine wall - this gave me relief for a few years. I was one of the minority (I can't recall the percentage) that grew new fibroids that caused even worse symptoms and in 2001, at the age of 42, I decided to have a hysterectomy. I had a "sub-total" in that only my uterus and not the ovaries (which were healthy) or the cervix were removed and I had a LAVH (laproscopic assisted vaginal hysterectomy) which was wonderful compared to the more invasive surgery 5 years prior. Downside is that I still have to have PAP's because I kept the cervix. The recovery on the LAVH was days vs. 6-8 weeks and many times it can be performed on an out patient basis, I stayed overnight only because the operating room was delayed and I didn't get out of recovery until midnight.

Until about 6 months ago my hormones have been normal (for me). Just recently I have started to have hot flashes and difficulty concentrating which is most likely part of the regular progression towards menopause. For about 6 months, I have taken a plant estrogen supplement on the advise of my Dr. and it has helped tremendously to lessen both symptoms. During my fibroid years, I tried all kinds of alternative cures and the Drs tried every medical option but nothing helped - even double injections of the drug Lupron could not stop my periods.

The hysterectomy was the best thing I ever did but then I don't have the complication of ANS issues. I can only imagine how much better you will feel if you are able to correct the anemia and of course the less invasive the surgery the better.

As previously suggested, I know there have been advances in treating fibroids. This is another case where it is of benefit to do your own research before consulting with your Dr.

[corina]

sophia,

what made me help make my decision, was that anesthesia is needed for both the hysterectomy and the scraping. i've been told that the scapring isn't always succesful. as i will take anesthesia just for once i want to be sure that my problems will be fixed.

maybe this helps you a bit,

corina

[Sophia3]

Thanks all. I emailed my ANS/endocrine/PCP doc last night.

I asked about safety of LUPRON...told him the surgery I was getting (polyps removed and then ablation) Said surgeon suggested hysterectomy.

Said I didn't want to take estrogen BUT since my problems wer FLUCTUATING HORMONES (like today it is warm but I am way too off balance to take a walk outside!! and mild vertigo) that I am tempted to yank out EVERYTHING. Especially since my breasts often hurt so badly they wake me up if I am sleeping on my stomach.

I said I didn't want to take those esophagus eating drugs for BONE BUILDING.

Then I had a P.S. about before HRT, how did women survive. The following is his reply. Oh, when he mentions crones, I wonder if he means the aged women who gained wisdom in their suffering or the withered old hags. He is a very liberal doc who would never suggest surgery.

But let's face it, since the tubal. this crap started as insomnia/fatigue in the late 80's. I have gone downhill though we have tried estrogen, testosterone, progesterone and COMPOUNDED versions of two of those...so maybe he is correct. I see this doc in May. I am going to start a home based exercise program, even if I have to do all in bed, to buiild my stamina, take my iron and just go for it. Take all things out...and go by this docs suggestion. But will put surgery off until I see him.

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A hysterectomy and very low dose estrogen or Raloxifen would be the best

long-term for you

Lupron just shuts everything in the ovaries off (starting at the pituitary)

probably will not worsen your sx since the levels remain constantly low

Before 1940 and in the third world now, most women do not live past

menopause

The hardships of life alone were/are worse than menopause.

Those that did get there had a terrible few years and became crones.