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Post by omaklackey on Feb 11, 2012 16:25:23 GMT -5
Bloomrae, I just wanted to say, you have to make the best decision for you, that's the best anyone can do. And even though its not a cure, there are some definite things about it that make it a good choice sometimes. Good luck on your decision.
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Post by immrsmoore on Feb 14, 2013 15:06:59 GMT -5
Hello Ladies. I would like an honest opinion about having a hysterectomy. My endo is not severe, only moderate. It's not affecting my ovaries or uterus and I don't have heavy bleeding. My problem is the endo that's irritating the nerves in my pelvic cavity. My doctor said he won't go near it. Too risky I guess. Anyway, I'm in pain everyday and it gets much worse when I ovulate and menstruate. The pain in my lower abdomen, mid to lower back and down the backs of my legs is horrible sometimes. I'm considering a hysterectomy (if my doctor would even agree to it). My other option is finding an endo specialist who isn't scared to remove endo from the nerves. Fertility is not an issue for me. I guess my question is, what would you do? Any opinions would be greatly appreciated. Be as blunt as you would like. I'm struggling with this decision.
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Post by semicolon on Feb 14, 2013 18:49:37 GMT -5
I would seek out an endo specialist. A hyst will help with uterine pain but not always endo pain, since the endo is not actually located in the uterus (sometimes around it). Endo is also capable of sustaining its own estrogen supply, unfortunately, so a total hyst and ovary removal is not necessarily a "cure.". I would seek out a specialist, and a true endo specialist has no fear removing endo from pretty much anywhere (I had it excised from my diaphragm). Endo on the ligaments or sidewalls can irritate nerves and cause back, leg, and hip pain. You might also want to try pelvic PT in case it is a pelvic floor issue, but my thoughts are to consider surgery then PT if you know there is endo there that hasnt been removed. I am definitely biased toward surgery, since that has helped me the most!
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Post by Karen on Feb 14, 2013 21:30:31 GMT -5
Ditto to what Semi said. Before you make any sort of decision like that, it's always best to get the opinion of a skilled doctor. A second opinion can never hurt, and they may have more confidence to address your issues than your current doctor. Unless your issues are a located directly on your uterus and/or ovaries, taking them out won't make a dent in things. It'd be like bringing your car in to the mechanic to remove the motor because you have a dent in the side panel... Find a good doctor who can help you move in the right direction!
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Post by immrsmoore on Feb 15, 2013 8:38:12 GMT -5
Thank you so much for the replies! When I stop and think about it, you are right. Thank God I found the names of some specialists in my area from this board. Looks like I'll be making some phone calls. Thanks again :-)
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Post by omaklackey on Feb 15, 2013 13:29:15 GMT -5
Excellent analogy Karen! I will remember that next time I need to explain why a hysterectomy doesn't always help. Mrsmore, defintely see an Endo specialist as its well worth it and it doesn't sound like your uterus is causing your problems anyways. If you have any other questions about hysterectomy or specialists feel free to message me. I had a hyster and then three years later I still had to go to a specialist. It would have been better to have done that first.
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Post by willow82 on Aug 15, 2013 11:52:08 GMT -5
I had my LSH, Laproscopic Supracervical Hysterectomy, with Dr. Belizan yesterday and I am doing amazing! My first surgeon DID get all the Endo, I did have a new spot on my right ovary, and new adhesions on my ascending and sigmoid colon. Of course he took all that crap out!
Dr. Belizan takes minimally invasive surgery to a whole new level! I have NO gas pain at ALL, no bleeding! I have about a quarter of the swelling as I did from my first Lap, no worse than one of my bad bloat days from the past month. Though I am sore as should be expected! I am much more alive than after my first lap, and already ALL of my digestive problems are gone! No more nausea, no more shakes, horrific pain, cramping, spams after going #2. No more horrific digestion pain at night, no more pain after eating!
I won't know whether or not I had adneo until my post op next Thursday, though regardless it seems clear my uterus was a huge source of my problems. The colon adhesions definitely didn't help, but it doesn't sound like they were dense enough to entirely be the source of my digestion issues.
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hagri
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Post by hagri on Mar 26, 2014 10:09:44 GMT -5
Hi there, I was doing some research about alternative options to hysterectomy regardless the fact that my doctor wants me to remember that it may be the only option to address my chronic anemia issue due to my Endo and adenomyosis. I found a clinic in Los Angeles that provides a surgery solution alternative to hysterectomy. They basically remove all the myomas, fibroids, and cysts with laser. They state that they did not perform any hysterectomy during those surgeries. They provide comprehensive information about the Endo, adnomyosis, ovarian cysts, and why they do not perform hysterectomy. Their website is alternative surgery.com. I am from Canada and I am wondering if anyone in the forum had experience with them, or know anyone who went thru that alternative surgery and could share their real experience. The testimonials on the website look promising! I really really want to avoid hysterectomy if possible.
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Post by willow82 on Mar 26, 2014 20:15:16 GMT -5
There are some new surgical procedures out there for adenomyosis that do preserve the uterus, however, I did not want children, they are very expensive, still somewhat untested, and I was fed up with adeno related pain. So I opted for a subtotal hyst that preserved my cervix, and my hysterectomy was entirely laparoscopic. It should also be noted that they have not sufficiently studied pregnancy after the procedure, and pregnancy is often not advised. So if fertility preservation is a major issue, the new procedures do not in anyway ensure that. I am very suspicious of the website you linked since many of the facts and stats quoted are heavily exaggerated and/or skewed. For instance the citation “If a woman undergoes a hysterectomy that leaves her ovaries in place, she has a 50% chance of suffering ovarian failure within 5 years of surgery.” According to a study the research shows women how have a hysterectomy have a hysterectomy have a 50% greater chance of ovarian failure than women with intact organs. "Ovarian failure occurred among 60 of the women with hysterectomy and 46 of the control women. Women undergoing hysterectomy were at nearly a twofold increased risk for ovarian failure as compared to women with intact uteri (HR=1.92, 95% confidence interval (CI) 1.29 – 2.86). The proportional hazards model further estimated that 14.8% of women with hysterectomy experienced ovarian failure after four years of follow-up compared to 8.0% of the control women. " from www.ncbi.nlm.nih.gov/pmc/articles/PMC3223258/ . Also ny surgery on the reproductice organs can increase the risk of ovarian failure. Bad use of stats and skewed info kill credibility for me. Another fav of mine was their surgery for fibroid vs myomectomy. Over half of what they said was heavily exaggerated. Also, can I add in that lumping together hysterectomy states with hysterectomy with oopherectomy stats is crazy irresponsible. They are VERY different things. Also lasers aren't the be all end all of good surgery. My first surgeon used state of the art davinci robots and lasers, and did a fantastic job. My second surgeon has pioneered the use of 3D goggles for laps, was the doc for the former president for the endo association, and he detests robots and lasers. He also did a fantastic job. What is most important is identifying your concerns about a potential hyst. Is it fertility? Is it concerns over having a vaginal cuff (which is not necessary! I don't have one!)? What is your concern, versus the potential benefits. I can say a lot of the hype about hysterectomies, is just that. I highly recommend hystersisters, they also have a hysterectomy alternatives forum, and there I believe some have had the Osada procedure for adeno, and some may have also had surgery through Alternative Surgery. It is also a great place to weigh the pro's and con's, and get information. They were a huge and invaluable resource to me before my hyst. I can also say for me my hyst gave me my life back. I am more a woman now that I was the 4-5 years before having my uterus plucked out. I do still have endo, and there is a reasonable probability it will return, but I will enjoy the time I have symptom free. Link to the Osada procedure: www.osadaprocedure.com/
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hagri
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Post by hagri on Mar 28, 2014 15:08:45 GMT -5
Hi willow82, the fertility preservation is out of question. I am not concerned with it anymore as I have accepted that it is what it is. Thank you for sharing your honest opinion about the website. My concern is will the benefits outweigh the adverse affect of the hysterectomy. I will check the websites that you referee two find any answers to my concerns and to make an educated decision.
I am happy that hysterectomy helped you and got your life back - it sounds encouraging.
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Post by willow82 on Mar 28, 2014 17:20:01 GMT -5
I would definitely check out hystersisters.com it is a great website. They have good information, and the forums provided a wide variety of support and persuasions on the topic. They also have a lot of posts and articles on hysterectomy alternatives. It is a very complicated decision, a very emotional decision, and a very permanent one. I was pretty sure I had adeno and that I might need one before a doctor said so, so by the time a doctor diagnosed me I was ready to hop on the operating table. Though there were 9 long months were I was weighing my options, trying different treatments, and emotionally sorting myself out. Hystersisters helped me A LOT.
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hagri
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Post by hagri on Mar 28, 2014 19:23:39 GMT -5
I do agree with you - it is a difficult and emotionally charged decision. I have checked the hystersisters website, an they have a ton of information. The Osada website brought me to the fertility center in St. Louis website and the video about adenomyosis surgery. Now I know what I am dealing with. Thanks again.
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Post by vweiss824 on Aug 15, 2014 13:25:09 GMT -5
I am 27 and was diagnosed with endometriosis and adenomyosis 5 years ago. I have been to multiple obgyns, tried hormone replacement therapy (bc pills, nuvaring and mirena iud), had multiple surgeries and am on my second round of Lupron. I've spoken to my primary doctor and she is on the same page as I am that nothing is effective and I have no quality of life. I have been trying to get a hysterectomy for the last 3 years and the gynos have always refused due to my age and having no children (I've had one miscarriage and have never been able to get pregnant). Does anyone have any advice about consulting a doctor about a hysterectomy and getting them to take my pain more seriously.
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Post by omaklackey on Aug 17, 2014 16:27:43 GMT -5
vvweiss824 where else is your endometriosis? If its in more places than just your uterus you may not get the relief you are after. Also did the Lupron help at all with the pain? If shutting down your hormones didn't do anything to relieve your problems then its very likely a hyster won't either. You can always find some old school doctor who doesn't know about the long term effects of having a hsyter at a young age and believe me they are MANY! I see more and more the farther I get away from mine how much of a mistake it can be. I get so frustrated trying to explain to the doctors and my family and my friends who all ask me "why don't you just get a hyster", that I did four years ago. I really love explaining that I have had two more surgeries since then with a specialist and I'm still in the same pain and crap that I was. Please don't give up! Its hard but it can be lived with, and without taking away things that are a part of you and what makes you a woman
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Post by vweiss824 on Aug 17, 2014 21:17:39 GMT -5
One of the main areas it's located is behind the pelvic wall and it's around the blood vessels that go straight to the aorta so they couldn't remove it. The Lupron has been ineffective for the pelvic pain. I haven't been able to work since February and my primary doctor is frustrated that the obgyns aren't taking this more seriously and I just don't know what to do anymore
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