Has Anyone Here Had A Hysterectomy?

[Guest GayleP]

I'm posting this for Poohbear who's in the hosptal. She's having a hysterectomy on Tuesday and the surgeon is saying he wants to take everything out. Initially she was told that they would just be removing her uterus.

Has anyone here had a full hysterectomy? If so did it make your dysautonomia symptoms worse or better? The final decision to remove the ovaries is up to her but she would like some input from anyone else who has been through the same thing.

Please keep Poohbear in you thoughts and prayers.

[Rachel]

PoohBear,

I will be thinking of you and praying for you. I hope that all goes well.

Rachel

[Dizzy Dame]

I haven't had a hysterctomy but I'm praying for Poohbear! I hope everything works out for the best

[dawn]

I had a hysterectomy 14 years ago when I was 37. They did leave 1 ovary so that I didn't need hormone replacement for about 8 years. It is the best thing I have ever had done!!!!!!!!!!!!!!!!!!!!!!!!!!

It did not make my POTS symptoms worse at all. Surgery is always tricky, but I went in early and got a couple liters of saline before surgery. I always get sick from anethesia so, the first day was rough. But it was soooo

worth it.

Dawn

[SunsetParadise49]

Thinking of you Poohbear!

[Guest tearose]

Good wishes to you Poohbear!

Yes, total hysterectomy surgery was a big deal. However, I did pelvic repair at the same time. I needed blood transfusions. It did take a week to get out of the hospital...not everyone will respond the same in surgery but having IV hydration before surgery is a must. I feel my POTS calmed down in a major fashion after the full surgery! I am on a small dose of estrogen only still.

Please let us know how you are doing.

best regards, tearose

[Sophia3]

Gayle honey, LETS CLARIFY things first.

FULL HYSTERECTOMY is the uterus and cervix. I had a partial leaving the cervix.

taking out the ovaries is OOPHERECTOMY...INSTANT SURGICAL MENOPAUSE is horrible.

Is poohbear going to TAKE ESTROGEN?

We need to know this before answering.

My sister had complete hyst and double ooph and was ragged out for a year. She had endometriosis and you can NOT take estrogen when you have that..she is active..jogger, and mountain climber and fatigued ONE YEAR from the instant shock of surgical induced menopause.

I am concerned for Poohbears plans.

You can always go back later for the ovaries.

Sometimes stopping the blood loss can help the hormones even out a bit as the hypovolemia from periods adds to the whole circle of hormonal boomerang.

[Sophia3]

I emailed you and Poohbear. Here is a great blurb about Dr Susan Loves book i came across.

Her books are great. she is HUGE on always keeping the ovaries unless FORCED to remove them due to disease like the big C.

One of the reasons that Love's book hits the mark is that she is going through what she calls "the hormone dilemma" herself, complete with hotflashes, nightsweats and frustration with the medicalization of menopause. We are able to learn with her, not just from her, as she passes on revelations in her research. One such fact is that the ovary serves in a little understood way long after the reproductive years. "In fact," she says on page 9, "making eggs isn't the ovary's whole function, any more than reproduction is a woman's whole function. The ovary is more than just an egg sac. It's an endocrine organ-an organ that produces hormones. And it produces hormones before during and after menopause." She makes it clear that we should definitely think twice about trading our ovaries in (through a hysterectomy) for a lifetime of hormone therapy that can't duplicate the ovarian endocrine symphony.

[Rose]

I had it done 3 years ago, they left 1 ovary, I never regretted the surgery because the pain went away, but make sure you're there for her and she knows that going through this can be very emotional. As far as going through it with our conditon it can be very tricky, but the doc needs to be informed of helpful things. It helped me to be given a sidative before I went in, also saline before and after surgery. Most important of all is to have supportive people around at all times in the hospital. I'm glad I left 1 ovary in, they said if it gives me problems in the future they can now go in with a lasar to remove it. Tell her she is in my prayers and I'm always here if she needs me!

[willows]

Hello, I had a hysterectomy over 15 years ago now and have never looked back.

I was in the awful position of having had 3 live children out of a total of 7 pregnancies ( 9 children as 2 sets twins) after my Mike things went terribly wrong and the whole lot fell away from me when he was just 2 months old , I was asked if they could take the lot and I just agreed there and then .

I've never looked back , no monthly problems, no PMT of any kind at all, no hormone imbalances .

I am on HRT ( 1 Mg) but thats only because they want to protect my bones and help with my sweats , but my sweats are not related to my hormones as I've been OK for years and years .

After the operation ( cut along the front) I was convalescing for about 3 moths , but it was plain sailing after this , unfortunately even though they built me a new cervix and other bits I never got to try them out at the time as my now ex ran off with an older woman

My pots didn't improve or worsen at the time or now , so for me it was just a case of this problem was taken away .

If you need anymore info give me an email.

Ami.

[Guest GayleP]

Thanks so much for your replies everyone.

Poohbear really appreciates it and will email people if she has questions. Of if she is unable to e mail then someone else will.

Thanks again.

[morgan617]

I had my hyst at age 31 and refused to let them take my ovaries. I have regrets over that, as they were covered with endometriosis and have done nothing but plague me since. The left one is always cystic and large and sore and the right one has shrunken to the size of a pin head, they can't even find it.

I never got to go back and "just have another surgery", due to many facters. I am 52 now and that stupid ovary still bothers me.

I know there are other factors involved with pooh bear, which makes this decision harder. We can only talk about our own experiences.

The hyst was one of the best things I have ever done for myself. Regarding the removal of the cervix, tubes and ovaries, it's highly personal, unless there's cancer, then no one seems to mind the idea of instant menopause.

There are a group of people that have always felt hysts and the like were a "mutilation" and for many women, they feel this is the end of their womanhood. For others (myself) I couldn't believe we are meant to be as miserable as I was. For the couple of months it took to recuperate, I went through different stages of feelings. But that is true with ANY major surgery. After a couple of months, i never had any regrets about it, until I realized my ovaries were just as bad as ever. Then i kicked myself.

It may be true that hormones are produced from the ovaries, however we all still go into menopause at some point, no matter what any doctor says, some sooner than later, some later than sooner, 100% of us that live long enough will enter it. They are much more careful about avoiding "instant menopause" from surgery now. Typically you get a long acting estrogen shot, which prevents waking up with it. Then you are started on estrogen before it kicks in. I know of 4 women who had hysts with BSO, and never had a single symptom of menopause. It's a matter of stopping it before it starts.

Of course, most of us on this board have various reasons why this may not be optimal, we have bodies that are bombarded by all kinds of different hormones, which make us feel like we do.

You can keep your ovaries, but at some point you are still going to have to deal with menopause. It's how you decide to deal with it that matters I guess. I am still bothered by that darn ovary, even though I am menopausal and now I'm too sick to take it out. Hind sight is 20/20. Some women, because of breast cancer or whatever just have to deal with menopause, some of us are willing to take the risks and take estradiol, or whatever. Some women don't have terrible menopause or the symptoms are short lived. Some are miserable. A huge percentage of women on this board are miserable, because they haven't gone into meno and have flucuating hormonal problems.

None of us will know how we are till we are there. I was on a very low dose of estradiol already, due to osteoporosis, but when i hit menopause, it was pretty instantaneous. Like over the course of a week, i knew what was going on. I upped my hrt a bit and have been fine. If I wasn't able to take hrt, I guess i would just deal with it, like everything else I have to deal with.

I'm actually glad I am menopausal, because I take a dose of med, my hormones don't dip and peak and swing and flucuate, so I no longer have to deal with that.

How we feel physically and emotionally going into surgery, will determine to a great degree, how we do after the surgery. If you feel like you are being castrated, you will obviously have some problems dealing with it. If you are so sick you just want it out, you will be less likely to have those kinds of problems. If you have kids it may be easier, if you didn't and wanted them, it will obviously be more difficult. If you didn't and never wanted them, it won't be as difficult. I believe this is one of those things where our emotions about these things DO come into play. The standard procedure for hyst is that if you are over 40, you are pretty dang close to meno anyway, and taking the ovaries will prevent ovarian problems that drastically statistically increase after menopause. It is still left up to the woman and should be her choice, and as I said, the decision is not always cut and dried, or black and white.

As I said, we can only relate personal stuff. My only regret is I didn't have my ovaries removed, it would have saved me a lot of suffering. But that is ME. Good luck sweetie on what ever you decide....whatever it is, it will hopefully be a well informed decision and one with a positive outcome.....

p.s. having a hyst, not having children, needing a mastectomy, having a few hairs on your chin, etc.....will NEVER make you less of a woman! Any woman that thinks that, needs a self esteem boost, and any man that feels that way needs a kick in his ovaries! allgirlmorgan

[Sophia3]

I am THRILLED to have had a partial hyst and no longer having periods! YAY.

I am keeping notes on the calendar to figure out where I am in my cycle as we just ran a boat load of tests and when they come in, it would HELP if we know where I am at.

Anyway, keeping the ovaries is a good thing for many and especially the younger you are. I know poohbear is terribly complicated and has been very ill for months..thus the boomerang of yanking out the ovaries could add to her orthostatic issues.

I was encouraged to have my ovaries OUT due to age (50) but I said no thanks..you can always go back if the hormonal shifts are drastic enough. I feel PMS and somedays have mild vertigo due to hormones I think but over all, do NOT MISS the few days to a week in bed from sick period.

It's complicated but if you FLOODED on your periods, that adds to prostaglandins and communication to adrenal, pituitary, ovary communication..so sometimes just stopping the periods is enough.

Again, it's a person issue but I figure, the LESS taken out the better as you can't put things back!

Plus I have been so overly sensitive to hormonal supplementation when they are low, that I can't imagine being DEPENDENT on HRT if ovaries were yanked.

The symphony of what ALL the ovaries do is still not known yet (pitiful as that is) but the fact many women feel worse on a period is a no brainer. My autonomic doc agreed the hyst was a great idea but with my bone loss and fatigue, taking the ovaries was a bad idea ..but I had researched that myself.

So, it will be interesting as more months go by, if I FEEL stronger with all the bleeding issues stopping and allowing iron, etc to build in my system.

So, poohbear has so many things going on that the whole decision and emotional whammy of a hyst is a huge deal.

Hugs and prayers to you and your docs, honey as you do what is right for YOU.

I wish I could send my surgeon to you and the anesthesiologists! Both were great and the gift of a laparascopic hyst was great..though of course all the healing STILL is going on inside for 8 weeks.

Gayle let us know what she decides.

[goldicedance]

Please convey to Poohbear my best wishes for her as she undergoes surgery next week.

I would never again take HRT given the risk of developing breast cancer. Even though my breast cancer was not estrogen sensitive, there is concern that the HRT could have played a role. Moreover, if I was faced with a hysterectomy, I would have my ovaries removed at the same time. I would prefer to do the whole ball of wax so to speak so as to avoid the possibility of future surgery. I think it is best to have general anesthesia as few number of times as possible as well as to avoid the possibility of future surgery down the road.

For that reason, when I had my gall bladder removed, I also had my appendix taken out.

All of these decisions are personal ones.

I hope that POOH makes her decision based on all the factors mentioned here and whatever other ones she knows of.

Lois

[DancingLight]

GayleP! How nice to see your name pop up! How are YOU?

Thank you for posting on Pooh's behalf. I am so sorry she is going through so much. I have it on my 'to do' list to email her my thoughts--but you know how that goes! So, please pass on to her how much I am holding her in my thoughts.

As for the hysterectomy question, I am glad to see that Sophia, Morgan and others chimed in as I have NO idea on this topic.

However, I did want to make sure that you had done a search b/c I know that when Sophia was making the decision and so many other folks over the past couple of years, the topic has been discussed in great detail--and perhaps some of this might help Pooh???? There are several folks who've had them, folks who've decided against it, and then folks like Sophia who made the tough decision to finally have a partial one.

Are you or someone else able to post updates on Pooh so that we can know how she is holding up and send her our good thoughts????

Emily

[jhjd]

We are all different, and she just has to decide based on what's right for her. I'm writing to encourage her to listen to her heart and body! We 'know' more then we think we do, and it's easy to become confused b/c the doctors are supposed to be so smart.

My story- I had ovarian surgery during which they took about half of my right one out and discovered that my left 'ovary' was just a lump of undeveloped tissue not connected to anything due to a congental defect. So they left a little more then half of the right one in, covered with a special material that's supposed to help prevent cysts, and (because I'd said I wanted as little out as possible) left all the other stuff in place. The doctor suggested that they give me a shot to stop the ovarian function to help it 'rest' and start me on HRT. Even though he laid out all these reasons, I still just felt like it was the wrong idea, and I have never regretted that decision! Sure enough, several months later, my hormones were back to normal levels (thus disproving a PCOS diagnosis and a few other things- but that's another story) and I felt much better. Yes, I did have mood swings, etc., but instead of hormones what worked for me was lexapro, which, as it turns out, also helped with my dysautonomia symptoms.

So the bottom line is this: if she's uncomfortable with having her ovaries taken out, then she should not. If she really feels it would be best, she should. All you can do is consider the medical science, consider the consequences, do your research, and, in the end, make the decision you feel best about regardless of what others may be pressuring you to do.

[Sophia3]

that't s the tough part for poohbear.......been in the hospital for days, feeling dreadful..has some blood transfusions and many complicationst too numerous to mention. Thus HER decision to do what is best is much more complicated than say, MY case.

That's why many of us are trying to send her info...Her having a pacer maker and lots of allergies adds to the double whammy as do other things going on in the background, numerous specialists attending her and all. So everything she does is a challenge to hinder something else of if it helps, it's going to wear her out.

I will try to check in here per her ok to give more updates.

Just do keep her in your thoughts and prayers. Will keep you posted when I know of any procedures she is having.

[runningshoe]

Hi,

I had my hyster before pots (2 years ago at age 40.) I Have my ovaries and cervix. Please let her know about the fabulous web site hystersisters.com. Great info, great forum. I wrote in at my one year hyster/anniversary about what I learned through the year it took to heal. She can look it up, my user name was runningshoe. She will need lots of rest and lots of time to heal but she will. I was in great shape (running everyday) and it was 6 months before I felt like myself again. My best advice is too surround her with people who willl take care of her and let her rest rest rest. Good luck !!!!

[Sophia3]

Thanks. Lina..I went to Hyster sisters for a couple months during my hyst and the site is great.

Poohbear is on dial up in the hospital and it takes FORVER for most sites to load...so she can't go there right now. Can't view ecards as they take forever to load but can do simple email WHEN she is up to it.

I agree that site is good...AND helped me to dx over a weekend when I developed a small hematoma...my surgeon was upset I didn't call him sooner but I thought I was having delayed post surgical pain and nausea..duh. It all turned out well except to be a nuisance issue.

[Poohbear]

Thanks to everyone for the well wishes and sharing your thoughts and experiences.

I am on dial-up at the hospital and it takes more energy than I have to do web searches right now.

Just to add a few things to maybe help others understand some of the particulars of my case. I have a central line (well..currently it came out while hospitalized and nobody will place another picc and I'm scheduled to have a port placed at the same time the other surgery is done). Anyhow, I'm on coumadin because I devleoped blood clot and will probably be on a pretty high dose of coumadin for the forseeable future.

Nobody likes the fact that I have a central line and yet nobody can figure out a way for me to be rid of it. I am severely anemic and being on the coumadin has now made the bleeding issues critical. There is no way to control my anemia without a hysterectomy. I was not prepared for this at all and it's been very emotional for me. I have been told that if I don't have the hysterectomy I may not have my own life much longer (again...long story with way too many complications to list right now).

I can't do any of the endometrial ablation procedures because I have cardiac pacemaker. One Dr. says we need to leave ovaries because I should not be on coumadin and estrogen at the same time. The surgeon says "take it all while we are in there". I am consulting with as many people as possible.

My gut says leave the ovaries...my body has been through so much already and will have a huge recovery ahead of me and I think taking the ovaries will be too much. I of course never want to have surgery again but I also don't want to remove something unnecessarily. I'm not even 40 yet so this is difficult both physically and emotionally.

I do not handle hormones well at all...even small topical compounded ones so that makes me fearful of estrogen.

I have arranged to keep somebody updated so they can keep all of you updated. I am now sick after getting a blood transfusion (not BECAUSE of the transfusion but because I'm in the hospital and everyone has been coughing on me all week). I'm running fevers and feeling horrible.

Now we have to get me well from this in order to proceed with surgery.

Surgery is tentatively scheduled for Tuesday and I will be taken to ICU afterward for at least 24 hours. If I do okay with that, they will move me to a regular floor for a few days. I am also having a port placed at the same time so that I only go under once. I asked about other methods (spinal block etc) but because my autonomics are unstable they want me under so they control my vitals and have airway access.

Thanks again for prayers and good thoughts--they are much appreciated especially during the difficult and trying time.

Hugs,

Poohbear

I'm scared but praying that all will go well and looking forward to surgery being over.

[Sophia3]

Oops..posted update when you did, so I erased it.

We are all rooting for you Poohbear!

XOXOXO

Soph

[DancingLight]

Oh Pooh,

I do not even have words for you...I just want you to know how much I've been thinking about you.

I will be so nervous FOR you with the surgery (you know how I worry!)...

You are just going through sooooo much. All I can say is that I am so sorry, and I am here supporting you.

Much love,

Emily

[BuddyLeesWife]

Hi Poohbear,

I can only comment on my own decision and you also need to remember that I don't have autonomic issues that further complicate the picture.

I had a laproscopic assisted vaginal hysterectomy (LAVH) in 2001 after many years of problems and anemia due to severe blood loss. I had what they call a "sub total" hysterectomy where they removed only my uterus and left my cervix; I also kept my ovaries. The doctor's left the decision up to me and in fact had the same conflicting advice about whether to keep or remove the ovaries.

My decision was to keep my ovaries if the surgeon could see that they were healthy, otherwise he had my approval to take everything out while he was in there. Since I had no endo, no cysts and everything looked good, he left them in and my hormones have been functioning normally for 5+ years now.

The reason I decided to try and keep my ovaries was based on the advice of my family doctor who said: "Your body is used to working with your hormones. If you do go on hormone therapy, we will be continually monitoring and altering the levels to find what works". He said that is what he spends most of him time on with his older femald patients. He also said that hormone therapy has improved and is good if you need it but in his opinion the real thing was the best.

I hope they are able to do this laproscopically as the healing time is much reduced.

Do you have an opinion from an autonomic specialist on the ovary question? I remember that Vanderbilt was looking into the connection on female cycle and dysautonomia, in fact, here is the info from Vanderbilt's website.

Hormonal influences on autonomic function

A recent addition to our research endeavors is investigation into the role of reproductive hormones, estrogen in particular, in the onset and persistence of symptoms experienced by patients diagnosed with orthostatic intolerance. Women of child-bearing age are the primary patient population of this disorder, outnumbering men 6:1. While the preponderance of women suggests a link with estrogen, and it is well recognized that estrogen has broad ranging effects in the cardiovascular, central and peripheral nervous systems, little information is currently available linking this hormone to the pathophysiology of orthostatic intolerance. A focus of future research, therefore, is to determine whether there is a cyclical pattern to the symptoms of orthostatic intolerance in women, to determine whether there is an imbalance in the hypothalamic-pituitary-ovarian axis that could affect autonomic function, and to investigate the role of estrogen in autonomic regulation of heart rate and blood pressure in patients and normal controls.

This is an emotional decision. When I had my hysterectomy, I had come to terms with not having kids and I was looking forward to the surgery and ending my struggles, but knowing that this would be permanent still bothered me. That and the fact that the decision was left up to me and the doctors were in disagreement also made it more difficult - I was worried about making the wrong decision.

I am thinking of you and wishing you the best - I know you will make the decision that is best for you.

[taylortotmom]

Hi, Poohbear.

I had a everything removed during my hysterectomy in 2004. Yes, my dysautonomia is worse- but it may have been worse regardless. What it did help is I no longer have to worry about three week long periods every month and debilitating symptoms cause by horrific periods. I no longer have to worry about cancer of my gynceological organs (which came up frequently because I had endoemtriosis on my colon and bladder which caused scary symptoms). In my case, the hysterectomy elimnated a lot of huge physical issues. Yes, I have SEVERE, progressive dysautonomia but I do not have periods to deal with any more and that has been a HUGE help. Good luck!

Carmen

[lizb]

Hi there, I had a hsty 22 years ago and I kept my overies and I never looked back. I didnt have POTS at that time, well I don't think so. At the time I was 28years old but it was the best decision I made. I had suffered from pelvic inflammatory diease for 2 years and no matter what medication the Doctor's gave me, it was like a boomerang, it just kept coming back. Decision like these are difficult to make. When I am faced with a difficult decision, I ask myself " can I live with the consequences of this decison" this usually helps me make up my mind.

Wishing you a safe operation and a speedy recovery.

You are in my thoughts

Liz Bxx