Common long-term hyst-related problems?

I'd been visiting the doc for three years before finally being told the fibroids are causing all my problems. Only because of the pain and continual bleeding am I having this surgery.

I have to give MHO - if I didn't know I had them, I wouldn't be having the hyst. Apparently most women have fibroids of some sort, they just don't all have symptoms. Unless there is some growth or pain, I'd keep "watchfully waiting" to be honest.

Good luck with your decision :-)

I'd like to stress the point that fussybird brought out--women who have the surgery and no complications are out there living their lives, not posting on the board. The women who ARE having post-op issues are coming here for comfort and support, and so you will see multiple posts from them (and I'm one of them, grateful for this site!). It may give you the impression that postop complications are the norm, when statistically they are not.

Before I had my surgery, I went to the HERS site and looked carefully at their list of complications (it was not a scientifically valid sampling, but for me it was a jumping-off place). The ones that worried me were the ones I pursued with my doctor at one of our preops. She told me statistics for each, and the conditions under which some were more likely to occur (like with pre-existing health conditions.)

I was adamantly against having a hyst right up until 3 days before the surgery....ironically, it ended up saving my life. Go figure.

(((Meg))) you're asking great questions! I wish everyone were as diligent as you are in exploring all aspects of the decision for or against hysterectomy. The thread is fine where it is... the Road is for ladies to post who are having serious or long term complications so they can get information and support. If you want to browse through the threads there to see what kinds of problems everyone is having, here is a link to the forum:

https://www.hystersisters.com/vb2/for...p?s=&forumid=7

Meanwhile, you asked about long term complications. This link has some good information on that subject and imho it doesn't seem very biased the way some do:

http://www.hosppract.com/issues/2000/09/shoupe.htm

I hope it helps in your decision process.

I understand your concern about the extensive lists of additional procedures in some of our signatures. Guilty as charged! In my case, I believe that everything that has happened to me medically has been a direct or indirect consequence of the hormone changes that started with perimenopause a few years back. Surgical menopause is much more stressful on the body than natural menopause, and can have far reaching consequences in terms of our overall health and well being. I believe that for some of us, it causes a major compromise of our immune system which leaves us open to all kinds of major problems, no matter how healthy we were going into it or how positive and upbeat we are in dealing with it.

Even women who keep their ovaries may not be spared the consequences of surgical menopause. The blood supply to the ovaries is compromised during the hysterectomy, and for some women (statistics vary) this is enough to cause them to fail either temporarily or permanently afterwards. This is something I think all women who plan to keep their ovaries need to be made aware of and generally DRs do not tell them; in some cases even when it happens, the DRs say it can't be. We have many women in the Hormone Jungle forum at any given time who can attest to the fact that it does occur sometimes.

The point has been made that many women do very well with their surgery and recovery and go on to live their lives and don't stay here and post (though some do, and we appreciate them very much! ). That you're likely to see a slightly higher proportion of problems here than in the general population because those are the women who will post to get support. That your odds of actually being someone who has serious complications are pretty low. That is all true... but if you turn out to be one of those women, it feels like the odds are 100%.

So, if and when you decide to go through with the surgery, you need to go into it with a positive and hopeful attitude but be mindful that there is a small chance of a negative outcome. That way, should the unthinkable happen (and of course we all hope it doesn't), you would be better prepared emotionally to deal with it than if no one had ever told you such things could occur. That is why we strive to make sure everyone does their homework first, the way you are doing, unless of course their surgery is being done for a life threatening emergency.

The most bitter, angry women I have seen here have been ones who either didn't get a second opinion, or their DR simply said "you'll feel so much better, you'll wonder why you didn't do it sooner", or found out afterwards they had a surgery they didn't actually need to have and ended up with complications. Some of the women with the most severe complications are some of the most grounded, positive women I know... because they knew going into it that they were assuming a risk, and after weighing the pros and cons, they decided that assuming that risk was better than going on living the way things were.

I hope this helps in some way. Good luck with whatever road you decide to take.
s,
-Linda

A whole lot depends upon your underlying condition prior to the surgery. If you look, a lot of ladies on the Road had their hysts for endometriosis. Unfortunately, a hyst may NOT cure that problem, nor can it help with adhesions that may have formed due to endo. Those ladies who have their hysts for issues such as prolapse, rectocele, or cystocele, may be dealing with underlying pelvic floor problems (sorry, pun was inadvertent, but I'm leaving it ) still even after surgery. If there are structural problems with the musculature, a hyst and various repairs may not always completely correct the problem.

It strikes me that, if cancer has been ruled out, and you are completely asymptomatic, then you have time to continue your policy of "watchful waiting." After all, why have a surgery unless it's necessary? A lot of us have had surgery for significant anemia, pain, cancer: but if you have no symptoms, it's going to be harder to accept if problems do arise.

My hyst was a surprise (well, OK, I got two weeks notice) and was for presumed ovarian cancer. I have a history of severe endo and four pelvic surgeries, each of which confirmed not only the endo but residual scarring and lots of extra blood vessel formation (again, not resolved with a hyst). I did not expect a "perfect" result, nor did I get one; I've been referred to a GYN-oncologist yet again for adhesions involving my intestines. Also, I'd kept my cervix; however, after thirty years of normal Paps (other than one questionable one), I now am dealing with abnormal cells on the cervix. Right now, I'm in that waiting period to find out what is next.

I am lucky, however: although I still am usually uncomfortable, it's a distance from the exquisite pain, bloating, and intestinal problems I dealt with prior to my surgery. And I no longer walk around with a hemoglobin of 9 gms (where normal would be 12 - 14 for the curious). I have my good days and my difficult ones -- on the whole, however, I saw an improvement.

That would be a difficult statement to make for someone who has no symptoms yet. They may come, or with menopause you may find that they disappear. What do your "other" opinions say about the surgery? What reasons do they give you for recommending it? I'm sorry if you've discussed this in previous posts; I'm already past bedtime and so can't research them tonight.

One more thought that hasn't yet been raised: many insurers have an algorithm that doctors must follow when considering a hysterectomy. Many women have been told that they must try trials of Lupron, or ablation, or other procedures first; that the hyst is only covered as the last resort when other, less invasive ways might take care of your problem. Most insurers require that second opinion, who also must follow the same algorithm. If you've not followed that path, you may find some resistance from the company.

You're obviously doing the smart thing . You're researching and asking excellent, thoughtful questions. I remember when I first found this site, I hung out on the Cancer Concerns board and also on the Road. I remember telling my DH that I wouldn't be surprised to wind up on the Road, and he, knowing my history, agreed. But we both knew that my surgery had to be done; the giant endometrioma was so involved that my entire "system" came out as one adhesion-covered block. It was beginning to cause bowel obstruction, and we all agreed that it was only a matter of time before either rupture of the cyst (thus seeding endometrial cells all over the pelvic cavity) or erosion of the structures around it, made the surgery an emergency situation. So my comment wasn't made out of dread, or fear, or self-fulfilling prophecy: my surgery was necessary, and endo is the "gift that keeps on giving."

In the end, of course, YOU are the one to decide what is right for YOUR situation, staying flexible should that situation change. In the meanwhile, you're totally doing the right thing to ask these questions, and I hope it helps, ultimately, your decision-making process.

Sorry to be so long-winded! Didn't mean to...

Audrey