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new here - why no threads about alternatives??? new here - why no threads about alternatives???

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  #1  
Unread 03-12-2006, 10:11 AM
new here - why no threads about alternatives???

I'm new and haven't read a whole lot here. Just wondering why all the gung-** pro-hyst posting, and no threads about alternatives. This is the "hysterectomy options and alternatives" forum, is it not? So where are the alternatives being discussed?

So here's my deal. warning ahead of time, do not read if you are hyper sensitive to hearing from a woman totally against having a hysterectomy for herself.. We all make the best choices for ourselves given our own unique situations and have the right to make our own informed decision.


I have extreme endometriosis. Had it completely removed by a specialist, after one diagnostic lap and two other doctors told me I needed hysterectomy. had two babies (that I would never have had if I hadn't kept looking for a doc who knew the first thing about endo or how to successfully remove it), and another lap (my third) to remove adhesions from the cesarean delivery of my first baby, and doc also found that in only five years, my endo had gotten almost as bad as it was the last time he did surgery. My uterus is enlarged (when not taking progesterone) to the size of a 14 week pregnancy, so doc suspects adenomyosis as well. Last lap was 1.5 years ago, and I need to take something for pain every day again already.

My surgeon says, and I believe him on account of doing extensive research on the subject, that hysterectomy does absolutely nothing about endo pain if any endo implants are left inside you. He says that if I have adeno, it will help with that pain, though. He says that my intestinal problems (also related somehow because it went away after my 2nd lap) would not be affected by a hyst. So why is he still suggesting I have my organs removed? Why is it an option now that I have had two children, when it was not an option six years ago?

I know several women in real life who had hysterectomies and still were in constant pain from endo. I know women online who have had hysterectomies and did not get complete pain relief. I know two women in real life who had hysterectomies, and pathology did not find adenomyosis. What is the justification for doing this to women? Why do we walk calmly into surgery, like lambs to the slaughterhouse? I want to know why doctors are cutting out our parts rather than trying to find a cure for the pain we are suffering. Do we cut off our foot because we have recurring ingrown toenails? I don't need that foot, I can drive my car instead of walking anywhere, I can get a wheelchair or a prosthetic limb.

I wanna hear from the women who have not had pain relief from hysterectomy. Or the ones who have had horrible experiences from going along with what their doctors have suggested. I wanna hear from those who opted not to do it, despite all the pressure otherwise, and who are happy with their decision.
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  #2  
Unread 03-12-2006, 10:38 AM
new here - why no threads about alternatives???

Hi notconvinced - I haven't been on these boards long but I can tell you there are a lot of women out there that have been advised to have a hyst that have not had it.

I am one. Although my situation was entirely different than yours. I'm 57 (today actually - have to get used to that new number) anyway two years ago I was advised to have a hyst because of hyperplasia (an overgrowth of the lining of the uterus). I had no symptoms except excessive bleeding - no pain at all. As soon as the dr gave me the diagnosis she asked if I wanted a hyst. I almost fell off the table - I had no idea that would be suggested. I opted not to - I had a D&C and was treated with medication. A year later a biopsy came back with worse hyerplasia but again I still did not want a hyst. I consulted another gyn and 2 ondol/gyns. Three of them advised the hyst. The last oncol/gyn said he thought I did not need it. I agreed and had another D&C in March 05. Now a year later my issues with the hyperplasia have resolved (I think since I am in menopause that made all the difference). If I had not gotten other opinions I may have consented to the surgery and been dealing with the after effects today.

This is a very difficult and personal decision and comes down to "quality of life". I also believe if a woman is not comfortable with the decision to have a hyst (for whatever reason) she will not have a good outcome.

For alot of women it is the best thing that ever happened to them and for others it is the worst and they are miserable and left to deal with the consequences the rest of their lives.

This is only my 2 cents.

Mary
  #3  
Unread 03-12-2006, 11:06 AM
new here - why no threads about alternatives???

Hi NotConvinced,

I can suggest you scroll down on the Hysterectomy Options and Alternatives board. There are several pages and they are the newer forums. I have been on Hyster Sisters two years and there have been ~many~ threads on alternatives to hysts. Such as a D&C, endometrial ablation, laparoscopy, Uterine Fibroid Embolization, myyomectomy, Mirena coil, lupron and just wait-and-see-observation, to name a few. On Hyster Sisters, ladies are encouraged to seek out alternatives methods to a hyst.

I agree with March1949 that a hyst is a difficult and personal decision. I might say that the majority of Hyster Sisters did not wake up one day and say, "Gee, I want a hyterectomy today". I think it comes down to where medical science meets the hysterectomy world. If all us Hyster Sisters could avoid a hyst and have a 100% cure with an alternative method, I think we would be lining up. Right now, the real world is that alternative methods can work really well for some ladies and for others it is a ~temporary fix~ and a way to have more time before a hysterectomy is the best option.

For me, I had large fibroids. I was 46 at the time of my hyst and my 2 opinions felt an alternative method could work - such as a Uterine Fibroid Emblization - ~but~ my fibroids in all likelihood would grow back. I did not want to go in for an alternative procedure and then turn around in a year's time and do it again. I did not need to preserve my fertility with my uterus since I was past child bearing years. A LSH was a less invasive hyst and a good decision for me. I wanted my ~quality of life~ back as March 1969 talked about. For me, now...I have energy, no more fibroid pressure, no more periods, no more b.c. and sex is great. I had a textbook LSH and my hyst was one of the best decisions I ever made for my long term health.

With endo, I did not have it, and from what I have read a hyst is not a cure-all for endo. That can make it a tough call in what to do. That being said, there are many endo ladies on Hyster Sisters who are pleased with their hysterectomy results.

it sounds like you may not like the idea of having to look at the possibility of a hysterectomy. I was very angry when I found out my Drs wanted to do a hyst. Then, when I researched and did my homework, a hyst came to be my best choice. Drs can only give us options. We make the final decision.

Best wishes. You will find a great bunch of ladies here.

Mary
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  #4  
Unread 03-12-2006, 11:24 AM
new here - why no threads about alternatives???

Dear notconvinced,

Here on hystersisters, there was recently a very lively debate on this topic. It started out with someone asking about the H-E-R-S website, which is very anti-hysterectomy.

I'm in an odd position, because you could call me anti-surgery. My opinion is that people in our culture get cut up all too much and for some pretty flimsy reasons. In my location, for example, the cesarean rate is over 40%. Is there any chance on earth that so many women need surgery to birth their babies? Of course not. AND YET, I am one of the women who has had cesarean. It's a long and gory story, so just suffice it to say that it was necessary to save the lives of me and my baby.

Same with hysterectomy. Thank goodness, it's far less abused than it was mid-20th century, when nearly every middle aged American woman lost their uterus, but it's still used a bit injudiciously, might we say. But then, again, I DID have a hysterectomy. I had been in the greatest pain for one year from adhesions (thanks to the cesareans!), endo, and a 14 week fibroid. I nearly bled to death 3 months before the hyster -- was hospitalized and given four units of blood. I went out of town for my sil's 50th and bled all over her luxurious sheets when I passed a blood clot the size of a baseball. The last month before the surgery I was getting pain injections every day.

Finally, I relented. Oy, this was a big thing for me. I consider this a feminist issue -- hysterectomy has historically been used to control women's "moods." Patriarchal medical establishment and all of that. Even Freud considered the uterus to be the seat of women's "hysteria," and while he did not participate in hysterectomies, he and a colleague were experimenting with breaking women's noses as they felt that the nose was related to the uterus. No kidding.

Post op, I found out that in addition to the adhesions, endo, and fibroid, I was also suffering from endometrial cancer. Again, with great difficulty, I had to come to terms with the fact that having this surgery saved my life.

There's a broad spectrum of reasons for hysterectomy, some good, some not so good. There's no way to reduce the subject to a mere choice of good and evil. I needed this surgery and thank goodness I had it. There's lots of other women here who needed the surgery and now need support. Maybe some of them didn't really require hysterectomy, but the fact remains that they need support, too. Personally, I never try to judge whether which category of necessity they fit into, I just try to offer support.

I applaud you for trying everything to avoid this surgery. I pray that it never come to pass. I hope, though, that if you ever need it to save your life, that you will be able to take advantage of it.
  #5  
Unread 03-12-2006, 11:28 AM
p.s.

Oh, notconvinced, I also felt that my intestinal problems were gynecologically related, and that turned out to be true. The adhesions were attaching my large and small intestine to the uterus and bladder. Anything causing the slightest inflammation in any of those areas made everything go haywire, causing intestinal pain and distress.
  #6  
Unread 03-12-2006, 11:58 AM
new here - why no threads about alternatives???

I can understand and respect that women who have had hysterectomies need support.

What I want to know is where can I find support in my refusal to have that hysterectomy? I *know* good and well that most of my pain is from adhesions. I know that without a doubt. I saw the video of my lap, and how my intestines are glued together into a solid mass instead of being separate ropes. I saw how my surgeon completely ignored the adhesions on my intestines after spending two hours removing adhesions from my bladder, ureters, and uterus. It's all there on the videotape of the procedure. I know my intestinal issues will not be resolved by removing my uterus, any more than my endo was affected in any way by taking Lupron and being put into instant menopause. But even my husband says, "it's no big deal, why don't you just get the hysterectomy?" It IS a big deal to me.
  #7  
Unread 03-12-2006, 12:37 PM
new here - why no threads about alternatives???

Hi NotSoConfused,

I can say...if you do not want a hyst, ~NO~ is the answer you own. Generally, a hyst is an ~elective~ surgery. An exception can be for cancer related reasons. As GenieMiami's said, it saved her life. We Hyster Sisters need to soul search for the why??

In my opinion, there can be as many ladies who have a hyst as those who do not have a hyst. I too am of the school that thinks many Drs are too knife happy. They can remove vital, healthy organs (ex. ovaries) during a hyst. If it an't broke, why fix it??

I also agree with GenieMiami that we Hyster Sisters ~today~ have 21-century gyneo medicine to help us through. Some of our great-great grandmothers lived with 24/7 gyneo problems that today could be cured or operable.

NotConvinced, you have a good thread here. I think it is important to talk about all the issues that are involved in the decision making to have or not have a hyst.

Mary
  #8  
Unread 03-12-2006, 12:42 PM
new here - why no threads about alternatives???

not convinced,
I am one of those who had a hysterectomy seven months ago for endometriosis and am still in pain and having more problems yet. My story is long so I won't go into it here but I will share that my doctor did not remove any of the endo lesions off my bladder or colon areas when he took my reproductive parts. Didn't even try. Then he proceeded to place me on hrt right away, saying without my ovaries the endo would die off and the dose was too small to affect the remaining endo. About 10 weeks post op I started having extremely painful bowel movements (regardless of whether stool was hard or soft) and a few weeks later the abdominal pain started again (alternating sharp and crampy pain that feels like period pain). It has not stopped but gotten worse. About a month ago I started having lower back pain that spreads down my left leg also. I had already ditched my gyn (that did the surgery) a few months ago as he was no help with the pain and problems with hrt and started working with a naturopathic doctor for bioidentical hormone replacement. While the chronic headaches went away once off synthetic hrt, I still couldn't get balanced and found that more estrogen replacement = more abdominal pain. She tried putting me on progesterone to inhibit the endo growth but I was very nauseated on it, though it helped with other issues. Then came to find out I had fungal yeast overgrowth in intestines via stool test with high levels of candida (was having symptoms of constant nausea now, plus body aches, low grade fever, chronic diarrhea, couldn't seem to properly absorb any hormones, vitamins, or antidepressants without severe side affects and worsening of symptoms) which is probably due to a number of factors, including hormone imbalance (imagine that), repeated antibiotics from hyst and sinus infections, and correlation to endometriosis itself. I am now on a yeast/sugar free diet and have to take antifungals and probiotics. Well, the symptoms improved for a few weeks except the abdominal pain and back pain, but now the last week all the symptoms came back worse even on the diet and supplements so I went to another gynecologist to get the abdominal pain and back pain checked out. Just doing an internal exam with a speculum and her fingers she hit on a spot near my rectum and close to where the back pain is, and I about screamed. She is 90 percent certain the endo is still causing problems since I was started on hrt right away and none of the endo was removed in the first place, except what was on my ovaries and uterus. So now I can not take any hrt for at least three months to start to see if the pain goes away or lessens. I may still need another laparoscopy to remove the remaining endo since my symptoms are quite severe. I have missed more work since my hysterectomy (12 days in the last six months not including the 4 weeks I was off for recovery from hyst) than before! I also have more symptoms and problems than before the hysterectomy. I never had the back pain before (except during periods) and now have to deal with full blown surgical menopause in addition to the diarrhea, low grade fevers, body aches, abdominal pain, back pain, and more. So I guess you can say in my case the hysterectomy did almost nothing positive for me except take away the painful periods and bleeding. I still faint from weakness, pain, and exhaustion and am not fully convinced all my problems are simply due to chronic yeast overgrowth or the IBS diagnosis I have endured for years before endo was discovered. Not even sure 100 percent what the status of my endo condition is but I know that it is there because the pain I have is much like what I had before the hysterectomy, albeit not as severe as when I was on my period or ovulating, except now I have the back pain too.
I may have had less problems and less regret if I had taken the time to find a doctor that was highly skilled and confident at removing endo from my bladder, colon, and other areas and did not allow me hrt for several months at least after my hyst. Unfortunately, the few doctors my insurance covered for second opinions all said a hysterectomy was my best option. Never was I given the option of a laparoscopy to excise the endo. I only had a diagnostic lap to find the endo (though I was told at the time the doctor would laser any endo he found..afterwards I was told it was too extensive). I tried the following options: Lupron, continuous birth control pills, and daily narcotic pain meds to deal with the pain. I did not know about natural progesterone as an option (although I tried synthetic progestins like Depo Prevera and couldn't tolerate the side effects), and I was not aware of nutritional ways to minimize endo pain (like gluten free diet, avoiding sugar and yeast and processed foods, and avoiding dairy and meat products where hormones are involved).
It is only after my hysterectomy that I learned a tremendous amount of info about endometriosis (and that a complete hyst is not necessarily a cure for it depending on your circumstances and severity of disease) , hormones, surgical menopause. I no longer take one doctor's opinions and suggestions to heart, but search out answers from many sources, including other doctors in various specialties, the internet and online support groups, books, magazine and newspaper articles, pharmacists, etc.. I only wish I had done this before. I was in a desperate frame of mind with the pain and feeling very vulnerable, got the runaround with my insurance company, didn't know about these online groups until a few weeks before my hyst (and I had two weeks to prepare from the time I gave in and said yes to being operated on), was not given any other options by the doctors I saw, and I really believed from what I heard that a hysterectomy would take away all my problems. I was clueless about hrt and so focused on the surgery itself I didn't take the time to research it. I thought a pill would take care of my surgical menopause symptoms.
I am not saying a hysterectomy is wrong, and many have found intense relief from having one, but I do feel it is important, especially with endo, to hear both sides of the story and to hear from those who still suffer. A hysterectomy is a very personal choice that should not be made quickly without exploring all your options (unless you have certain cancers or other conditions where not having one will drastically shorten and/or endanger your life). It does carry risks and not everyone will have them but it is necessary to be aware of them. Unfortunately, it is impossible to know all the risks as our bodies are very complicated and there is still so much not known about the negative effects of removing the uterus and/or ovaries. You have to gather all the positive and negative info you can and weigh the pros and cons with the situation you are dealing with now. Are you comfortable with the pros of having a hysterectomy outweighing the cons of continuing to deal with the pain and problems you have now? Is there another treatment you haven't tried with less risks that you are willing to undertake? Only you can make that decision. I would not ever recommend a hysterectomy unless you are completely comfortable with it and have weighed all your options carefully.
I don't know much about adenomyosis so can't help you there with alternatives. However, there is a sub forum here where women discuss success stories of alternative methods to hysterectomy. You might want to browse there to see if anyone talks about adenomyosis. Here is the link: https://www.hystersisters.com/vb2/forumdisplay.php?f=216
Good luck to you in whatever you decide and I hope you find relief for your problems. keep visiting this site as there is a lot of excellent info and resources here and it is not all pro hyst. This site is really neither a pro hyst or anti hyst site, just a support for dealing with hysterectomy in whatever capacity. Check out the resources and articles tab too as there is info about adenomyosis and endometriosis as well as alternatives to hysterectomy. Here are some of those links: https://www.hystersisters.com/vb2/lin...o=browse&cid=2
https://www.hystersisters.com/vb2/link.php? (go to search resources box at bottom of page and type in adenomyosis or endometriosis to get links about each)
Hope this helps!
  #9  
Unread 03-12-2006, 12:56 PM
adhesiolysis

Wow, not convinced, I am so there with you on the painful adhesions and uncooperative doctors. You must have been so frustrated that he didn't lysis your intestinal adhesions. In my experience and through the research I've done, that "gluing up" of the intestines can cause all kinds of pain.

In my case, or at least the way the doctor portrayed it, the adhesions all emanated or met up at the uterus. That does seem possible if, indeed, these adhesions were due to previous cesareans. I'm not in pain now, four months post-hyst. Will it ever come back? Who knows?!

Two months after the hyster I had further surgery. This is where I coincide with you on doctor frustration. The original surgeon didn't think I had cancer so he didn't do all he should have, causing me to need more surgery. Surgeon #1 is "world famous," and so many nurses told me how fast he is in surgery. I think he made the mistakes he did because he was in too much of a rush. He spent so much time on the unexpectedly bad adhesions that he zoomed through the hyster. The fact that the next surgery was SIX HOURS long, largely due to further adhesiolysis, supports my theory about the first guy being in a rush.

Sounds like your surgeon also felt he had given you enough of his valuable time when he failed to complete the lysis by ignoring your intestines.

I just re-read this real interesting approach to adhesion pain: http://www.obgyn.net/women/articles/...anter_0615.htm
This guy does two laps a week apart for adhesiolysis because new adhesions form within a week of surgery, but the new ones are pliant and flimsy, so it causes less trauma (and therefore adhesions) than taking down the old ones (during the first lap).

It's all so frustrating, trying to figure out how to get out of pain and lead a normal life. I hope you get there.

btw, although I consider it highly inflammatory and poorly documented, the aforementioned H-E-R-S.com website is most definitely a place to find support for your decision against hysterectomy.
  #10  
Unread 03-12-2006, 03:07 PM
new here - why no threads about alternatives???

yup, I think part of the problem is my surgeon is one of those "world famous" doctors, and is highly respected by my regular ob/gyn... so it's impossible to find anyone who is going to disagree with him and that I can trust (have this problem trusting doctors after living with endo for thirty years, twenty years of being told it was all in my head, then there's that cesarean I shouldn't have had but it was necessary because of the reaction my baby had to the induction medication I was given). He did such a great job with my second lap surgery. And then I go back to him five years later, and it took care of lots of the problem, but not all of it. So who do you turn to when you are already seeing the top doc in the field? Do I just go back to the same surgeon again? Do I ask my regular ob/gyn to do it, and have a bowel/intestines kind of doc there with him to help straighten out the mess that is not part of my reproductive organs? Do I keep trying different progesterone until I find one that works and pray for early menopause?
  Quote:
Two months after the hyster I had further surgery. This is where I coincide with you on doctor frustration. The original surgeon didn't think I had cancer so he didn't do all he should have, causing me to need more surgery. Surgeon #1 is "world famous," and so many nurses told me how fast he is in surgery. I think he made the mistakes he did because he was in too much of a rush. He spent so much time on the unexpectedly bad adhesions that he zoomed through the hyster. The fact that the next surgery was SIX HOURS long, largely due to further adhesiolysis, supports my theory about the first guy being in a rush.
my specialist surgeon did not listen to me when I told him how bad the adhesions were. I knew it before the surgery. I have had them before, I could tell where they were located and that they were way worse than what I had before. He chose not to believe me, said it was just the endo come back, and had another patient scheduled for surgery one hour after me. My surgery took two hours, mostly because of all those adhesions he didn't think I really had. I know he was in a rush. He never even came to talk to me afterwards, just gave my husband the video while I was still passed out in recovery. He told the nurses that I was going to stay overnight, but nobody told me why. I had no idea what was going on, I thought he must have found something really really bad. Of course, the nurses couldn't tell me anything. All they said is that he wanted me to stay overnight, and it's typically just outpatient surgery. Finally, his assistant came to see me and I got to talk to someone who was there and could tell me what is going on. By then I'm in a near panic, my husband has gone back to our house to bring the baby to me to nurse, and we're resigned to make the best of this unexpected turn of events. The assistant doc says to me "I hear you're going home today" I said, "nobody told me that, they only said I had to stay overnight, but they won't tell me why" He said, "didn't dr. tell you?" I said, "he never bothered to come talk to me at all"... all in all, it was a very unsatisfactory experience, and one I am not in a big hurry to repeat any time soon. It was a complete 180 degrees from what my first surgery with this specialist had been like. Somehow he completely lost any sort of bedside manner in the five years betwen my surgeries.

...I was taking Ovrette (progestin-only mini-pill) to suppress my periods and control the pain with good results. Then my pharmacist says it's no longer available. So I'm switched to a different progestin which does not help and causes bad side effects. Nothing else on the market has the same progestin as the Ovrette had, except in combination with estrogen (which I categorically refuse to take for various reasons, one being that I have endo and the other being that I am still nursing my baby). Compounding pharmacist can't even get the ingredients to make it! Now I'm taking otc progesterone cream, at higher than recommended dose, with okay, so far, results. But I'm also still having to take something for pain every day. I function okay as long as I take my pain pills. Problem is I don't like taking them and often put it off until I'm incapacitated or yelling at my husband or my kids and they don't deserve to be treated like that. How long is my doc going to keep refilling my pain pills before telling me I can't have any more unless I agree to the hysterectomy (my very worst fear in the world)?
I'm also on a sugar-free and gluten-free diet, taking digestive enzymes, magnesium, and drinking pau d'arco tea daily. I've got the candida under control, mostly. I've taken care of the mystery "IBS" (that oddly enough had gone away after my second lap surgery where the endo was totally removed).

I just want to stop hurting and stop being sick all the time and live a somewhat normal life. A hysterectomy, to most people, is some sort of magic cure for everything that could possibly be wrong with me, but I know better. I know my immunological problems will still be there. My chemical sensitivities and food allergies aren't just going to go away because I have no uterus.


good grief, sorry this got so long!! I kept having to add more, and then after I posted it, had to edit it and add even more!
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