Pots And Hysterectomy Question

[Sophia3]

Due to fibroids and polyps, to get things cleared out would need endometrial resection AND ablation. Or I was thinking just the resection (used to be myomectomy procedure)

Now after a HORRIFIC period that once again rendered me barely functional, I am thinking of just getting uterus removed but leaving cervix and ovaries.

I realize the HORMONAL FLUCTUATIONS make me ill but my theory is this.

With no uterus to bleed, what HAPPENS to the communication of hormones that tells the uterus to bleed?

Doesn't there have to be neuro-hormonal communications in order to have FLOODING PERIODS? My periods stop, slow down, kick up heavy, in the bathroomo every hour or 90 minutes to deal with things. With modern low flow toilets, you can't just flush away the evidence anymore. LOOKING at it all makes me lightheaded and dizzy. So if there is NO YO YO of flooding for 24 hr, slow down and flood some more, wouldn't removal of the uterus HELP the symptoms to some degree?

Anybody here have uterus removed BUT STILL HAVE OVARIES? I figure if the PMS shift that will still be in my body does not slow down in a year, I can always have those removed later?

Any thoughts? feedback? My gynecologist can do hysterectomies laparoscopically and go home the next day or even the same day depending on how the surgery goes and how I feel. So at least that will be easier as opposed to cutting thru fat and muscles in abdomen. But I know I will need to still take it easy to adjust to things.

P.S. my ANS doc who is an astute endocrinologist, fears yanking out the ovaries if we do not have to could make me feel WORSE. Some women never adjust to supplementation because whether orally or patch, the added back hormones are never the same as the ones we are born with.

OR it could make things better or worse to yank out ovaries..so for now, I am wanting them to stay.

[Sophia3]

Ok, the PRE SURGERY clean out has me nervous. I see the doctor on the 23rd to discuss this.

the BOWEL PREP is my CONCERN. they make you do liquid diet for two days, and laxatives the day before like Dulcolax and Magnesium citrates.

I am concerned messing up electrolytes and being too weak for surgery? The nurse told me in some cases, the doctor DOES allow Ensure..so I will ask for THAT!!

Surgery will be laparoscopic but they make you get cleaned out in case of a bowel getting nicked as a precaution.

[Jersey Girl]

I asked Dr. G at NIH over two years ago if having a hysterectomy would help me, because I was desperate for anything to make me feel a little better, and he told me that the hysterectomy would not help my symptoms, although acknowledging that the hormonal fluctuations associated with having periods would definitely make one's POTS symptoms worse. I am glad I didn't have a hysterectomy, but I did endure 2 traditional D & C's over the past 4 1/2 years that did help somewhat with the heavy bleeding. Just in the last few months my periods have begun to lessen finally, but now the hot flashes are unbearable. I also tried Alesse and Prometrium early on and ended up being hospitalized because of such severe reactions. I hope you get some relief. We are all different. Martha

[Sophia3]

D&C did nothing.

Had some success initially with Prometrium for several months. Hysterectomy was suggested many times over the years but I said NO WAY...would deal naturally.

Now I have polyps and fibroids. So rather than endometrial resection AND ablation, getting the uterus removed...anemia is a problem over the years and can't handle THE MESS! It' s amazing how you can have heavy periods for years and the huge clots and nausea with the bleeding..too much. I am 49 and the bleeding IS DOWNRIGHT scarey at times.

My ANS doc said wise to leave ovaries but he knows the bleeding makes me bedbount TOTALLY...so just wondered if anybody here had uteruses out. but if ovaries shut down or PMS worsens, I trust my ANS doc to help with things since he is endocrinologist that understands baby doses of meds, over the gynecologist.

thanks

[Dawg Tired]

Okay... it's a family thing with us. Oldest sister had her uterus out (cancer) they left her ovaries because she was convinced that if they did that she would not need hormones. I told her that her ovaries would probably quit functioning within 2 years if she left them in after the uterus came out. But... since she is the BIG sister she left them in and, 18 months later, they quit working and she went on HRT... and she felt WORLDS better.

Second sister.... Same experience...

Me... I told them to take out everything. I had a history of cysts and WE have a family history of ovarian cancer. I did have about a year of re-adjustment, but it was nothing compared to the problems I had with the constant bleeding, cramping, disabling days I had.

I have known women who left the ovaries in and supported them with progesterone creams and kept things going longer.

I take a plant-based estrogen, and, 10 years after the Hysterectomy, I have NO regrets.

I felt so much better the morning after the surgery I did not even need pain meds.... I had been in SO much pain for SO many years that I was just used to that level of pain.

[taylortotmom]

I had a total hysterectomy two summers ago and it was the third greatest day of my life. Prior to the surgery, I had horrible periods (understatement) that at times lasted for 21 days a time. My dysautonomia has continued to progress but at least I don't have to deal with the blood loss and other symptoms the periods brought. I use a hormone patch and have had very little side effects. I'm unsure of your question (I'm extremely tired right now so major brain fog) but in my case a total hysterectomy was the right thing to do. Good luck!

Carmen

[Sophia3]

Thanks ladies...Yanking out ovaries is not an option yet due to multiple breast surgerys and dozens of tiny cysts (to small to aspiarate) Estrogen feeds those and it is genetic. My mom had mastectomy 45 years ago her cysts went crazy all over her chest wall.

Dr. Grubb said straight menopause would be tough. My ANS doc/endocrinologist said, leave ovaries for now since I am NO CANDIDATE for estrogen supplementation.

AND I have osteopenia...so gotta keep the ovaries a bit long to address the bone loss..and many other issues clouding my case that DO NOT ALLOW estrogen of any kind...so just wondered if that lack of HORRIBLY SICK periods helped at all..JUST YANKING OUT THE UTERUS.

Sorry if my question was fuzzy.

[Dawg Tired]

I, too have had multiple breast surgeries and cysts...... even the estrogen has not seemed to make things on that end better or worse. It is about the same as it has always been.

[labas_2u@shaw.ca]

Hi Sophia

I had a hysterectomy when I was only 26 years old and it was the best decision I have ever made regarding my health!

I definitley did not want a hysterectomy (way too young) and put it off until I required 3 units of blood after a 63 day period!! After a bone marrow, it was discovered that I had one of the lowest iron counts recorded at the hospital.

Looking back, I can't believe I was crazy enough to let it get that bad

My ovaries and cervix where left in mainly because I was way too young to go through menopause and I had no structural problems, just the constant REALLY heavy bleeding. I had it done vaginally so I don't even have any scars what-so-ever.

Having a hysterectomy is a very personal decision...do you completely trust your gyncologist?? Maybe a second opinion is in order ( I got my second opinion from a hematologist) All the pros and cons of ovary removal were discuss at length....I left mine in and they worked for years until I went through natural menopause....

Not for one second have I ever regretted having it done. I felt like a new person after about a month.

Ask a lot of questions Sophia, and good luck with which ever decision you make!

Maggs

[DancingLight]

Sophia,

This topic is way out of my league (I'm only a bit more aged than last time we 'spoke' here Sorry, humor not a good choice here, but you always have such a good sense of humor and make me smile!)...

Anyways, I really don't know anything about this topic, but reading through your posts and others stories too about really made my heart go out to you. I don't know how you make such a decision and I don't have a clue about this topic, but I wanted to chime in with my support for you...what you are dealing with sounds so miserable.

I guess I need to be so thankful that menstrual suppression has, so far, worked for me. I know some docs don't like completely suppressing periods like I do b/c of the extra hormones during the year...but, as you know, it's a matter of choosing what we think we can live with and the lesser of two evils.

It's so hard to make such a decision when it could totally change your life for the better or totally screw things up more! What a horrible bind to be in.

As you know, I HAD to get my gallbladder out--it was definitely the right deciison, but the consequences have been horrible. In the end, though, after all that, it seems getting horribly sick from the surgery may have been a hidden blessing and our clue to the fact that I have Lyme...only time will tell.

I wish I could help you answer this dilemna...know that I'm thinking about you.

Emily

[BuddyLeesWife]

I don't have autonomic issues but I had the surgery you are considering in 2001 and it has been great for me. I still get some PMS type symptoms once a month which is how I know my ovaries are still functioning but without the extreme bleeding it is just bothersome. I do think my hormones may be starting to taper off now so I started taking an herbal supplement about a year ago (on the advise of my doctor) and it seems to help (I am 47).

I know I have mentioned before how much the severe blood loss drained my energy and how awful I felt for many years. After having the surgery, my energy level came back and I was amazed that I had adjusted to functioning at such a reduced level. I hope that you experience the same improvement.

[corina]

sophia,

i am sorry i am late on this but i wanted you to know that i do know what a difficult decision it is (especially because we potspeople can have very much trouble with aeneasthesia, which is one of my problems). i do think though that once the uterus is removed you will feel much better. this is just my personal opinion, everybody is different and it takes a long time to recover from this surgery.

i wish you wisdom in making a decision,

corina

[willows]

I had a total hysterectomy almost 15 years ago now .............this will make you laugh.

I'd had my son about 5 weeks and once again was bleed, bleed, bleed .

I've had 7 pregnancies in all and had the most awful problems, have twins twice and losing one of each twin, miscarriages in the second trimester , you name it I've had it .

So when this bleed, bleed , bleed wouldn't stop I thought 'here we go again' I was still post toxemia from having pre -eclampsia from this birth , but decided that I wouldn't let it get to me .

Took myself of to a supermarket ( still with a bit of a bump showing ) went to get a frozen chicken out of one of those big long freezers , reached in ' ping ' something moved below .............then a wonderful warm feeling went down my legs ...............ah nice this I thought ............then the pain hit .

I'd lost my uterus , it seemed to have decided it no longer wanted to inhabit my body but wanted to have a look around the supermarket on its own

Of course everyone about thought ( as I still had a bump ) I was in labour , telling me to 'breath' ha, ha, ha !!!!

I was rushed into hospital and had it all taken away .

Best thing I've ever had done in my life , no more kids, pregnancies ( planned or otherwise ) and NO more bleeding .

Willows ..............still buying frozen chickens !

[juliegee]

Sophia-

I hope I'm not too late replying to this.... I was also told that I needed to have a hysterectomy. I had a huge fibroid- 10cm (or maybe several smaller tumors stuck together). They were causing bulk symptoms. I was having trouble urinating and having BM's. I also bled a ton nonstop. Instead, I had a relatively new procedure, that was much less invasive- but took care of the problem. An interventional radiologist embolized the arteries feeding the tumors. They have shrunk by more than half and my periods are much lighter. He basically cut-off the blood supply to the tumors.

Many people feel much better after a hysterectomy, but not everyone. This is major surgery, esp. for someone with POTS. In my research, I encountered many women who took years to recover. And a percentage, who no longer enjoyed sex following the sutgery. All stuff to consider.

Best of luck to you. If you want more information regarding the embolization, send me an E-Mail.

Hugs-

Julie

[ellen]

Sophia-

I had a total abdominal hysterectomy three years ago (at age 48) and have no regrets!

No more cramps! No more mood swings! Except for the absence of a period and the associated pain, I feel the same. I do use the estrogen patch, which keeps away the hot flashes, but you may never even have hot flashes.

As far as the prep, ask your doc about your concerns. I was told to use an enema the night before and it was really no big deal. I also took a double dose of florinef to prepare for the anesthesia and all went fine.

I hope you find what works for you.

[lthomas521]

With no uterus to bleed, what HAPPENS to the communication of hormones that tells the uterus to bleed?

Doesn't there have to be neuro-hormonal communications in order to have FLOODING PERIODS?

What bleeds is the endometrium, or the lining of the uterus. It bleeds because the hormone levels drop so much that it is no longer supported and it disintegrates.

During the early part of the menstrual cycle, the estrogen tells the endometrium to thicken and develop. After the release of the egg, the progesterone produced by the corpus luteum (the sac that produced the egg) in the ovary starts to suppress the growth of the endometrium (in opposition to estrogen) and tells the endometrium to start producing nourishing substances to support an embryo. If implantation occurs, the endometrium will get continued progesterone support from the placenta. If no implantation occurs, the endometrium will start to disintegrate when the progesterone support from the corpus luteum stops. The bleeding results from the disruption of the blood vessels as the endometrium disintegrates. So, the hormones are not telling the uterus to bleed. The drop in hormones is telling the body to stop providing support to the endometrium, which then disintegrates and is shed.

If you are taking a estrogen/progesterone type of contraceptive, you will have a "withdrawal bleed" when you take the placebo part of the regimen. That's because the progesterone support is "withdrawn." Of course, you can use a regimen that continues with the active pills and skip periods. That's the theory behind Seasonale, but you can use any estrogen/progesterone combination drug to achieve the same thing.

So, if you have no withdrawal of progesterone, you will have no bleeding. That's why women who are using the progesterone-only types of birth control (e.g., Implanon) don't get periods.

There are all sorts of reasons why a woman can bleed very heavily with her periods. Two easily overlooked causes include hereditary bleeding disorders, such as von Willebrand's disease, and the effects of some prescription drugs, including Prozac. Look for "menorrhagia" and/or "metrorrhagia" listed under side effects in the prescribing information.

If you have no uterus, you will have no endometrium to develop and then disintegrate. So no bleeding. Of course, if you have endometriosis, you'll have little (or maybe not so little) bits of endometrium in places where they don't belong, but that's another story.

[labas_2u@shaw.ca]

Hi lthomas

You are so right and so informative. I learn so much from your posts!

I just want to add to Von Willebrands - It is rare but you can have 'aquired' Von Willebrands which is usually caused by an autoimmune disorder (this is what I have)....

Maggs

[Marie]

I am sorry to hear about your difficulties and I hope whatever decision you make it helps you feel better! I had a hysterectomy at 37 years old. I am 43. I have 3 kids. I have not had a migraine since my surgery. I was up to 1 - 3 a week. I still have my ovaries and they are functioning normally. I ended up with endrometrial hyperplasia, a fibroid, and my uterus fell. Because of the autonomic neuropathy and all that goes with it, I am still fatigued, but not quite as bad since I am no longer anemic since my surgery. I asked my doctor about ovaries not functioning a few years after surgery. She said that it is not common for the ovaries to stop functioning. I had mine tested after five years and they are fine.

Marie

[Sophia3]

I am very FAMILIAR with how the menstrual cycle works and why we bleed.

The questions was more complicated. FIRST if you have a cervix and the ovaries (I will have all those after the surgery) YOU STILL have hormones communicating and the whole H-P-A axis that is in tune to the female hormones.

Some women bloat and spot for a few months afer just removing the uterus.

What I WANT to know is how long does it take the brain to figure out the uterus is gone? Or does it.

I am familiar with WHY we bleed. BUT, and this is the biggie. THe blood is there in the uterus. WHAT HORMONE tells it to flood? Usually off balance of estrogen to progesterone I know. BUT what about the out of control flooding that waxed and waned each month for 24 hrs. slowed down and started up again and lasted 7 days?

I think the blood and uterus itself has communications doctors do NOT yet know about just like we are not SURE what all the ovaries spurt out in addition to the well known hormones.

It will be nice to know if the lack of flooding will have an effect on my fatigue. It will be nice not to be tied to the bathroom though I am well aware of the PMS and hormonal swings that will remain. But I hope to exercise thru that which was IMPOSSIBLE when I was FLOODING.

Due to numerous breast problems and family history--that I RESPECT AND HONOR, I choose NOT to yank out ovaries yet and take estrogen.

Plus I have lots of boneloss. Need good doses of estrogen for that I don't want those dreadful osteoporosis meds either that eat your esophagus. (I have taken baby steps to start weight training on lower half of body but that is going slowly)

I have a feeling, nobody has thought of these questions IN THE WAY I HAVE. I am not sure I am making myself clear anyhoo!?

But I have read PLENTY of stories of women bleeding/spotting thru the cervix for weeks. And for those with endometriosis that is hidden, that can happen as well.

So, let's hope this deal will rid me of YEARS OF FLOODING that I have put off for over a decade.

Especialy after reading "MENOPAUSE could make me much worse" and Dr. Grubb told me the same thing.

So, oopherectomy would be a SHOCK. My endocrinologist agrees with taking the uterus and leaving the ovaries (He is my ANS doc as well) He also understands and values my problems with estrogen and the like.

So, I see the surgeon tomorrow, the 23rd and will see what he has to say.

Thanks for all the replies. This is NOT SOMETHING I have taken lightly and have read womens' books off and on for 15 years...but nobody has even said WHAT kicks up the flooding once it is there?

AND the CONNECTION to the ANS and periods and vertigo. Yes, low estrogen can cause many symptoms of POTS and the like....but we are all complicated math puzzles.

[Sophia3]

Ok..I have my notes ready to print out and the doctors office calls!

He has an emergency C section and a pt in labor! So I may not see him today after all....will have to call first before leaving...He is a 60 second drive down the hill and around the corner.

At least I found out what hospital he does the lap hyst in and it has all private rooms!

He prefers pts stay in 23 hrs after the procedure.

[Sophia3]

I think I kind of answered my bleeding question. It is more neurohormonal in nature.

HEAVY MENSTRUAL bleeding can affect or cause hypovolemia. So therefore, getting rid of the FLOODING each month should help the symptoms.

Hormonal swings cause symptoms but so does worsening of HYPOVOLEMIA though I try to stay hydrated.

I tried to Google this but came a cross a couple PAY ONLY SITES to read the medical info about this. Not necessarily about POTS but how the excess bleediing gives a woman SYMPTOMS of hypovolemia.

If anybody has some access to articles about this, please let me know.

It's the HYPOVOLEMIA STUPID! I am thinking to myself....matters not what hormones are involved..stopping the gush of flooding will hopefully help the O.I.

[lthomas521]

I think that Maggs is right. There is supposedly an acquired form of von Willebrand's disease that can result from hypothyroidism.

http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract

A friend of mine had it about 10 years ago. She had to postpone her hysterectomy until it was under control. When she called me to ask if I'd ever heard of von Willebrand's, I said, "Yeah, it's common in Doberman pinschers." She said, "Are you telling me I have a dog disease?" I said, "Don't worry. It means you're a purebred."

[lthomas521]

My guess is that ultimately they will figure out that it is excess FSH, not lack of estrogen, that causes postmenopausal bone loss.

http://www.medicalnewstoday.com/medicalnews.php?newsid=42034

Estrogen tells your pituitary that it has secreted enough follicle-stimulating hormone (FSH) and luteinizing hormone (LH). When your ovaries stop producing much estrogen at menopause, the pituitary doesn't get that "feedback." So it just keeps secreting greater amounts of FSH and LH, as if it were trying to kick-start your ovaries. That's why FSH levels rise at menopause. In fact, postmenopausal women who aren't taking estrogen produce so much FSH and LH, which is passed intact in the urine, that they can donate their urine for the FSH and LH to be extracted and used as a fertility treatment for younger women.

Estrogen replacement therapy will decrease the amount of FSH that the pituitary secretes. That decrease in FSH, rather than the effects of estrogen on bone, may be what is preventing osteoporosis. Ultimately, I think that researchers might develop an FSH blocker to use instead of estrogen-type drugs to prevent osteoporosis. But that is years in the future.

As for hypovolemia, I have asked numerous doctors why I have hypovolemia. The answer always translates to "the autonomic system moves in mysterious ways." But stopping unnecessary blood loss sounds reasonable to me. And menstruation is really unnecessary. Lots of women in our grandmothers' generation had maybe 2 dozen periods in their lifetime, what with going through menarche relatively late, having many children, and breast-feeding them. When I found out a few years ago that you can deliberately skip periods by just continuing to take the active pills, I was thrilled, and then enraged. Why in the name of good common sense didn't anyone tell me this when I was 13!!!!? My sister always said, "If men had periods, there'd be a cure by now." So there was a cure all along, and they didn't tell me. They have some 'splainin to do.

[Sophia3]

Thanks, LThomas.

I also heard the name of a rock song years ago, some hard rock group allegedly sang, but I never heard of..."If Men Had Periods, Tampons Would Be Free."

But wow, I would've loved to have skipped many periods myself.

Oddly, I have LOTS of boneloss already....YIKES! Another reason I didn't want to give up ovaries and "Natural sources" are just as bad as estrogen for certain issues.

25 years ago, I had gum surgery...my periodontist at the time was mortified at the bone loss in my jaw then....but this was before DEXA scans.

So makes you wonder how much of this hormone stuff is genetic, happenstance, caused from ABC, or all of the above.

I know a friend of mine who is 70 had everything yanked out 40 years ago and never missed it for a moment...AND never took estrogen, never had a hot flash, and feels great. Married to a guy 20 years younger than she is and they have been together for decades. They are both very conservative so dont' fit the usual mode of such age difference! She moves tons of dirt each year in wheelbarrows to tend her TV WORTHY HUGE Garden.

Go figure.

Oh, when I got so sick from the heat and humidity this summer and discovered just watering the flowers for 10 minutes at a time, in the shade made me deathly ill. My doc gave me the term for lack of sweating in email. Anhidrosis (sp?).

Said it was very common in horses.

Thanks for the links. I will check them out.