<p>Yay, Teri! Knocking on wood. The folks in the Exercise thread have been wondering about you. </p>
<p>Great news!</p>
<p>I had both fibroids and adenomyosis (diagnosed via MRI). Adenomyosis is when the uterine lining works its way into the uterine muscle tissue, so that when you have a period you’re not just sloughing off the lining - your uterine muscle itself is actually hemmoraging. They’re not sure what causes this, but previous c-sections seem to be one possible cause (I had two, due to pre-eclampsia and high BP). The only treatments for adenomyosis are hormonal or hysterectomy. Birth control pills helped me for several years, but as I approached 40 my history of high blood pressure led my gyn to refuse to continue prescribing them for me (even though my bp was controlled by meds). When I wasn’t on BC pills, I’d always had irregular periods - anywhere from 21 - 32 days, but usually on the shorter side. I was hemmoraging painfully nearly every 3 weeks on an unpredictable cycle.</p>
<p>At 41 I had a partial hysterectomy and it was the absolute best thing I have ever done for myself. It gave me an increased energy level and decreased moodiness (even though I still have my ovaries). No more planning my life and my family’s activities (“sorry kids, no beach day today”) around my unpredictable periods. No more sitting at work unable to focus due to pain. My sex drive even improved because I wasn’t exhausted from bleeding all the time. </p>
<p>Now, at 51, I will probably have my ovaries removed next year. Both my mother and my father’s sister died of ovarian cancer in their 70’s. I had a negative BRCA, I get annual ultrasounds and CA-125 tests, and my doctor and I agreed it was safe to wait until we were pretty sure I was in/entering natural menopause, then take the ovaries out. I haven’t had any hot flashes or night sweats, but I have other symptoms and my blood tests indicate I’m pretty close to menopause if not already there. I’m hoping that by waiting until about the age of menopause to remove my ovaries I can avoid the downside of having them taken out (increased risks of osteoporosis and dementia).</p>
<p>For anyone struggling with this decision who is younger than 50, I’d consider removing the uterus now, and having the ovaries removed later if they are a concern. Removing the ovaries can be done laprascopically, so it’s not a huge surgery and long recovery.</p>
<p>Lafalum84 - when you had your partial hysterectomy, did you have it done abdominally? I know some people have to have it done that way due to the size of fibroids, etc. I am SO glad I did not have to have the midline incision that some women do. That being said, my problem with recovery is, I have five very small incisions (the largest isn’t even an inch long and one is in the belly button) that are basically healed on the outside, but I keep being told it’s the stuff on the inside that still needs time to heal. And that’s where I get frustrated because I’d like to get back to my regular activities, but if I do, I know I could risk extending the recovery. </p>
<p>I just read through this entire thread. Last week I had a D&C/Hysteroscopy with Myosure (to remove uterine polyps) for post menopausal bleeding. The pathology came back negative for cancer but I have something called simple endometrial hyperplasia with NO atypia(precancerous cells). I also have two fibroids (not large). You would think that I should be fine now but my GYN wants me to have a hysterectomy at some point soon. He says that usually they treat simple endometrial hyperplasia with progesterone but I cannot be on prolonged hormones because I have (previous diagnosed) liver hemangiomas and hormones could make them worse. If I don’t have a hysterectomy then I would need endometrial biopsies every 6 months or so to make sure the lining of my uterus doesn’t change. </p>
<p>I don’t want a hysterectomy. I have had 5 abdominal surgeries in my life and I don’t want anymore. It is unlikely that I would be a candidate for laparascopic or simple hysterectomy because I have so much scar tissue in my lower abdomen from the other surgeries. My OB/GYN was unable to complete a laparascopic procedure when I had an ectopic pregnancy because he said that the scar tissue was too extensive and so I had my cesarean scar opened up again for that. </p>
<p>I have no issues with incontinence or my sex life and I really worry that a TAH will cause that. I just got into great shape and hate that it will be probably months before I can work out again at the level that I like (intense aerobic). </p>
<p>Any thoughts? Is my doctor being rediculously cautious or wise? </p>
<p>Seiclan - it bears repeating - go visit the HysterSisters website and ask your question there. (as an added bonus, they’re still using Vbulletin so it will be like the old days of CC). If I were you, I’d be asking the questions to a gynecological oncologist. They not only deal with just women who have gynecological cancers, but they follow women who are at risk for developing it and make recommendations based on what’s going on. After what I’ve been through, if I ever had to have any gynecological surgery again, that’s the kind of doctor I’d go to. They perform a lot more of them than a regular OB/GYN. </p>
<p>I can’t really say what I’d do in your shoes, given you wouldn’t be eligible for a da Vinci or laparoscopic surgery. But I’ve had endometrial biopsies done twice and it was some of the worst pain I’d ever experienced. I would not be happy, then, looking forward to a life time of that procedure every six months. If that were truly the case, they’d have to offer me some really, really good drugs every time, in order to get me to cooperate. </p>
<p>Thanks for the response teriwtt. My doctor does want me to meet with the gyn oncologist to discuss this. He refers all his potential hysterectomies these days to the gyn oncs. Yes, I too have had two endometrial biopsies and they were horribly painful. Maybe the specialist could do the davinci, we don’t know for sure. I just spent 2 hours reading the hystersisters website and it scared the crap out of me. All this talk about swollen bellies that last a year and persistent abdominal pain…</p>
<p>I’m 4 1/2 weeks post-op, walking two miles every day at a decent pace now, working out in the yard (wanting to do much more, but limiting myself so I don’t create a complication at the tail end here), driving myself everywhere since the end of week 1, etc. I didn’t take anything for pain after three days post-op, nothing. I spent three hours at a bridal shower when I was five days post-op. I have taken maybe four-five naps during my post-op period. I never bought any special clothing just for the post-op days. My regular yoga pants worked fine for me. I can honestly say I never had any incisional pain, nor itching. </p>
<p>I will try to say this delicately - after reading that board for five weeks now, I observed a pattern. Almost all of the women who have complained of complications, etc., have eventually admitted to being on the ‘fluffy’ side, meaning they are obese, not in anywhere near the same physical shape that you or I were (would be) prior to surgery (from the sounds of it, it sounds like you’re in better shape than me). I eventually read many, many posts about ‘cutting through layers of fat due my weight’, ‘bellies flopping around and causing pain because of being fat’, 'needing to wear abdomen binders to hold all the ‘fluff’ in after surgery, etc. </p>
<p>And you will find lots of women who eventually will admit that they had a breeze of a recovery, and therefore didn’t find any reason to report on a boring recovery. So yea, you will get a skewed number of women reporting the complications because that’s one of the main purposed of the site… to support those who need support, which are usually the ones who are having complications. </p>
<p>After reading that board, I am convinced that practicing a relatively healthy lifestyle gets you great gains in major surgical recovery. Also, some of those women are just plain older than you or I, and they’re going to be at a higher risk of complications due to their age. You do have to read the site for a while to pick up on trends. The first few times I went on it, I was scared, too. But now I realize my recovery fits in the majority of cases.</p>
<p>Teri, congrats and knocking on wood for you! seiclan, this is clearly the case for a second opinion.
I’ve been playing phone tag with my GYN doc last week… They want to tell me something that they would not want to talk in a voicemail. Oy. It better be the @&$% vitamin D test results! My pre-Boston gift from morher nature from hell scared the daylight out of me, but the next one was ok. So…</p>
<p>Totally agree with teri re that site. I came away thinking there was a surfeit of hysterics (the psychological kind, not the uterus kind).</p>
<p>I had a breeze of a recovery, I do believe it’s because I was in good shape. I have not been happier about many medical things in my life than my vaginal hysterectomy. And it allowed me to have so much more energy (because I’m not anemic all the time) and so much less angst (because I’m not worried about the logistics of living with unpredictable bleeding all the time) that it’s allowed me to really get in shape. And I found out postop that I had adenomyomas too. So even waiting for menopause would not have stopped the bleeding. Probably too few people like me would ever post on that site. Our stories are too boring.</p>
<p>OP here. I thought I would chime in about the complications on Hystersisters. While there may be some truth to that, I’m quite thin and healthy, and I did have complications. Nonetheless, I’m now 6 weeks post op from a laparoscopically-assisted vaginal total hysterectomy and back to doing EVERYTHING I did before. I did find that the abdominal binder was very helpful for some abdominal swelling and discomfort I was experiencing up to about 4.5 weeks or so. My complications were immediately post-op due to bladder issues. But I did have pain, swelling, and discomfort for many many weeks. I still tire very easily, but other than that I’m pretty much back to normal.</p>