<p>Not having orgasms without a uterus? I’d never heard that one! Def not true in the cases I know of, including me. </p>
<p>Well I’m clearly not a medical professional, just what a few friends who had it told me. Trust me, it wasn’t really a conversation I wanted to get in depth on.</p>
<p>My new to me FL M.D. suggested hysterectomy. I had my Boston doctor (don’t you just love these guys/gals?) direct everything about my treatment, and so, I never had the hysterectomy. Years later, when I hit menopause, I took the only synthetic HRT. No regular hormones for me, given CA history. My g/f, an M.D., chose the total hysterectomy. She has also had both breasts removed and reconstructions. What I am trying to say is that I’d include an oncologist and specialists, then make your best decision.</p>
<p>I’ve known women with such heavy flows that they cannot hold a job. A hysterectomy improved the quality of their lives.</p>
<p>I’m still going to say - if cancer is a problem, then the solution is surgery. If it’s not cancerous, why does it have to be removed. Mine is 4 months. Tampons every hour. I manage to work. The medication is a wonderful thing.</p>
<p>If the medication works, it’s great. If not, then that’s an issue. There are options between surgery and no surgery, too (I just wasn’t a candidate for those). And new treatment options being developed, too. There are getting to be good choices out there. </p>
<p>Bromfield- great to hear such a success story. Can you give me the name of your Mayo Clinic doc? I live in Maine, so Boston isn’t that far, and a second opinion might be a good idea (though I will have to wait until after April 1 since I will be buying a different insurance plan to cover all this stuff.) We are utterly broke right now so I worry about borrowing another $150, or whatever my 20% would be, when we will need to be spending so much on the surgery, etc.</p>
<p>I’m so appreciative of everyone’s comments, I can’t tell you!</p>
<p>I HAVE gotten my oncologist in on this, so we do have his input, though it isn’t terribly helpful. He said (by way of his assistant who I spoke with) “Just get the ovaries out at the same time. She’s not using them anyway. Those things are overrated anyway!” His assistant (a woman my age) had the same reaction I did ("Well he isn’t a woman and he’s not going to have to deal with the surgical menopause!) She’s also the one in the office who does advising and statistics and stuff, and she said that my chance of getting any cancer related to the ovaries (ie a second BC that is hormone positive -remember mine was hormone negative- or ovarian cancer) is only very slightly above general population. So, someone who never had C has a 6% chance and I have a 10%.</p>
<p>I’m going to pursue this further, I could still be convinced to lose the ovaries, but if that is the risk I’m not sure. I’ve also since heard that some women leave just part of one ovary, which supplies some hormones for a while for a more natural menopause. I’ll ask about that too, as well as more details on what non-hormone options are available to me to deal with possible side effects if I do take them out.</p>
<p>Right now I think I am leaning towards having my uterus removed but leaving at least part of my ovaries. but I will be talking with the doctors more next week.</p>
<p>In the meantime if anyone else has any more insights, please let me know. This has all been so helpful in helping me think through things and in making me feel not so very alone in this!!! Thank you!!!</p>
<p>It isn’t about being a man or woman, the physician should present the risks, benefits, informed consent, and help you make the best decision. The reality is that we don’t choose our doctors because they suffer from our ailments.</p>
<p>PhotoOp, fibroid uterus can be debilitating. Some patients have significant bleeding requiring multiple transfusions. Furthermore, in rare situations, the TAH surgery can lead to post-operative complications that require further surgeries to repair incisional hernias.</p>
<p>If you want the very latest review article on Uterine Fibroids, I will provide you a link below. I typically get nervous providing scientific journals to patients because I don’t know how much of the medical jargon they will understand. The last thing I want to cause is more confusion or worry. Nevertheless, here is the link:</p>
<p><a href=“http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3914832/pdf/ijwh-6-095.pdf”>http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3914832/pdf/ijwh-6-095.pdf</a></p>
<p>frugaldoctor, thank you for the article. I’m fairly experienced with reading medical journal articles due to my cancer experience and daughter’s mental health issues, so that wasn’t too hard to follow.</p>
<p>It does remind me, though, of my discomfort that I’m considering this major surgery -with some serious possible risks- for something that I don’t have a really clear set of reasons for. At my appointment, the dr seemed to be saying it was about quality of life only. If that’s so, I’m not sure that relief from the heavy periods (only 5-6 more years, probably) and urinary issues is worth the risks.</p>
<p>No one has specifically talked about the relationship of the fibroids/surgery to my own cancer history and my mom’s uterine cancer, they’ve just alluded to it. So I think I would like to hear exactly what’s that’s all about. I will follow up with my GYN and oncologist on Monday about this.</p>
<p>My husband’s good friend just told me about her recent hysterectomy. The surgeons nicked her bowel during surgery and there were major complications, infections, internal bleeding, more surgeries, and a 9-day hospital stay. That’s pretty terrifying. </p>
<p>I’m so torn between wanting to say, “fine, take it out so I I won’t have to worry about it any more” and this feeling that I’m trading some survivable discomfort for a whole lot of risks… ugh.</p>
<p>Does anyone have any thoughts about the accuracy of the endometrial biopsy test for uterine cancer when there are large fibroids involved? My GYN discussed this test although I’m not sure if it needs to be done if I’m choosing hysterectomy. It seems logical to me, though, that such a test (which involves a blind sampling of enometrial lining) might not be very accurate if there are all those big fibroids in the way, blocking the sampling device. (In fact, my mom’s endometrial cancer was “hiding” under a uterine polyp that they suspected as the cause for her bleeding.)</p>
<p>I’ve tried to find data on line about that but have not found anything. Clearly, cancer risk is a much more serious concern than the heavy bleeding and urinary issues which are just unpleasant. </p>
<p>Endometrial biopsy is pretty low-tech, I agree. My surgeon did one during my initial workup for the bleeding, but even she said that it was kind of one of those boxes to be checked off. The real diagnosis of fibroids was clinical and via a good ultrasound (and later MRI as part of a workup to see if I’d be a good candidate for embolization instead of surgery–see–I really did not want surgery either! 
) The imaging might help put your mind at ease re the chance of uterine cancer if you have not yet had it. </p>
<p>And re the horror stories–you know this, you’re going to hear all the horror stories while the good stories are quiet until you ask around; they’re hidden. This is why my H says he’d never have a vasectomy–he saw all the bad outcomes at work and of course never saw the hundreds of good outcomes for every bad one, lol.</p>
<p>Thanks, jaylynn. I actually did already have the ultrasounds (abdominal and vaginal) and that’s why they know about the fibroids. My concern is in making this decision now about surgery. If there is cancer, or even increased cancer risk, it’s a no-brainer. I asked whether the ultrasound could dx cancer and she said “no”: I’ve read that US is used to dx enometrial cancer so I’m assuming that it;'s not useful in MY case, due to the already weird fibroid growths. She mentioned having the endometrial biopsy, so I’m wondering now how conclusive that would even be, due to my reasons above.</p>
<p>And, yeah, I try to keep the horror stories in perspective 
But if there’s little-to-no cancer risk, and it’s just a lifestyle issue, I would weigh the whole thing differently and might not be so quick to have the surgery…</p>
<p>Yup, totally understand. I think imaging can look and see that the endometrial tissue is normal other than the fibroids–at least that’s how I understand it from my husband. The fibroid tissue is of course clearly muscular in origin, and a different kind of mass in the underlying uterine tissue would look like neither fibroid nor normal uterus. But it’s tricky with big fibroids, but he and the other radiologists were confident that it was just fibroids, which was borne out by pathology done after the hysterectomy. I totally agreed with your point of view–until it truly did become a lifestyle issue, a major one, for me. Good luck with your decision.</p>
<p>There is a wonderful site called Hystersisters that helped me so much before,during and after my partial hysterectomy at age 43. There is no topic that you can not discuss with other women who have been there or going through all sorts of issues …the knowledge and support was amazing! I chose to.keep my ovaries and now at 53 I am so happy with my choice! Best of luck with whatever you choose!!!</p>
<p>A few more thoughts. When you see a 2nd (or 3rd) opinion, as them (after they have given you a medical opinion), if you were their sister (or them-self or their wife depending on MD’s sex) what would you recommend doing? Also when seeking these people out, find out who has a great surgical reputation for what you want. </p>
<p>I had to fire my first OB/GYN (saw him through pregnancies and D & C after miscarriage) who would not move up my mammogram after I found my breast lump which was marble sized (he did an in-office ultrasound and didn’t know what the h— he was looking at, I was over 50 and never had a cyst, and he tried to needle aspirate twice - but since it wasn’t a cyst he could not aspirate anything). I argued with him twice in the office to move up the mammogram. At that time you could not move your mammogram up (now you can if you have a lump). I was waiting for the mammogram to take away my fears, when I should have alerted my family practitioner who would have moved up my mammogram. The 10 week delay meant I went from stage I to stage IIIa. It could have cost me my life. I had to go through more extensive treatment as a result, and had a surgical option taken away from me because I had to fight systemic disease (outside of the breast). Lesson learned the hard way - no matter how caring the MD, they can make a mistake, and I am the one who will be the loser! Had I known at least one of several more facts (not as commonly known as now) I would have pursued the mammogram via family practitioner.</p>
<p>I found a great OB/GYN via asking for recommendations and narrowing the list, and one year when I met my co-pays and deductibles and was strong enough after all the cancer treatments and I was out of the woods, I had a bladder sling procedure done by him (even when I would urinate before jogging, I always leaked - evidenced before my cancer); I had the required bladder retention testing, and insurance approved; he did a great job. So when I met the criteria for the hysterectomy, he was the surgeon and he did a great job. </p>
<p>I am not one to jump to go ‘under the knife’ but in 2013 (the same year as the Feb hysterectomy, done vaginally with laproscopic assist to get SO done too) I had been experiencing wheezing with exercise, and recalled shortness of breath since back in 2012. Having gone through so much medically, you tend to not worry about minor things, but the wheezing made me think I had developed asthma. It turns out I had reflux so bad (it developed more severe symptoms as time went on, and I had a hiatal hernia with gastritis and esophogitis, and so both my respiratory system and sleep were compromised with increasing abdominal pain) and I met all my co-pays and deductibles for 2013. My gut feeling (no pun intended) was that I had to have the surgery. I made the mistake not listening to my gut with getting my mammogram moved up (trusting OB/GYN one too much). If I tried to put this current situation off, it would only cost me more out of pocket and keep me getting more miserable. GI guys do not like to recommend surgery (many are not good candidates, it is a big surgery, a less skilled surgeon can run into serious trouble quickly, and supposedly a fair portion of people do not have ‘good’ results); first GI MD said 1 in 3 get relief with surgery (after knowing about the hiatal hernia), then he said 1 in 2 (after the upper endoscopy revealed the esphagitis and gastritis). My response was, if the surgery doesn’t work, we can always go to medications as plan B. I had a good idea of surgeons (family practitioner concurred) - I went to see the MD that was on the top of my list (the GI guy recommended his partner, who ended up assisting). The surgeon was a bit harsh with me on that initial appt (don’t know if he was having a bad day or if this is a screening tool he uses because the surgery is not for wimps) - but when I said I had the hysterectomy surgery in Feb and had a great recovery, he said I would do well with this. He had a partner assist, because they can get into trouble (nick the spleen, then the spleen needs to be removed, they retract the liver during the procedure…) - so I had the surgeon of my choice and the recommended #2 guy assisting; procedure was laproscopic assisted nissen fundiplication (possible open…). No surgical complications and I was done in 50 minutes (however the anesthesiologist had trouble in-tubating me because my respiratory system was swollen - they had to use a camera assist – again confirmation I needed the surgery). Surgeon warned me it might take me 6 months to feel better. It didn’t even take 6 minutes (of course they put plenty of lidocaine type of solution in the gut before closing me up, because the procedure had major cuts and suturing of the stomach - stomach is made ‘fat’ by cutting a ‘window’ and wrapping the stomach around; the diaphragm is repaired and the fatter stomach should not push through diaphragm again). 25 days after surgery I was able to swim again (I swim a mile a day breast stroke, as often as I can get to pool - try to get at least 20 days in a month or more) - have lots of weight to lose, but am slowly making progress, 20 lb down and 50 to my goal; 35 to no longer be ‘overweight’. </p>
<p>I agree with other about trusting your ‘gut’ on your overall situation and evaluating the input.</p>
<p>Sounds like you have some great physician options.</p>
<p>Good luck. Let us know what happens!</p>
<p>I understand your concerns and it is good that you are giving careful thought to your options. Getting opinions from your various doctors is smart. The ultrasound you had would be able to tell you if your ovaries were normal size and without masses or cysts so if that is true your ovaries are ok. It can also tell the presence of uterine fibroids. As far as the endometrium, ultrasound can tell if it is thickened or if there is a mass, absent those findings it is likely ok. But if your doctors are worried about an endometrial lesion, a biopsy is an in office procedure which can provide info. But basically if your ultrasound was normal except for the fibroids there is no rush for you to decide beyond the quality of life issues.</p>
<p>Will your problems get better as you enter menopause? If they will naturally improve - and I would get several recommendations - I’d wait it out. By the way, I had VERY heavy periods in my late 40’s. Sometimes I didn’t leave home on day 2. But I made it through.</p>
<p>I think docs are very quick to recommend surgery, so I would at least get a few opinions. </p>
<p>Stacy: sent you a PM–got your message. The new format of CC has me confused and I can’t find the outbox. Hope you got my PM.</p>
<p>I had full hysterectomy when I was about your same age. Surgical menopause was no big deal. I went off hormone patches after about a year. No repercussions. Glad I did it. Had ovaries removed at same time. A relief .not to worry about any of this anymore.</p>
<p>Thanks, crizello. I am glad your surgery and aftermath went well! I won’t be able to do hormone therapy, though, because of my breast cancer history. So the surgical menopause might be much worse :(</p>
<p>Will hormone therapy increase chances for recurrence of triple neg breast cancer? Sounds like still need to evaluate your specific options and risk factors. Medical oncologists have more outcome data and decision factors available now than in the past. </p>
<p>There are oncology GYNs that primarily only get referred to with female reproductive cancer (everything reproductive except for breast cancer); maybe able to get a referral? This sub-specialty deal with uterine and ovarian cancer and probably are really in tune with the pre-cancer factors and what your best options are.</p>