Karen, I was just curious about your symptoms and what ultimately led you to your hysterectomy. You can email me speech-chick @ cox. net if you prefer. I have been having increasing longer periods with clotting, increased cramps, and "awareness" of my uterus (sort of a feeling of heaviness, but not pain) when not on my period. My GYN said my uterus feels a little enlarged, but it's hard to tell b/c my uterus is also tilted. Last year I had an ultrasound and they found 2 small masses which are suspected to be either fibroids or adenomyosis. My symptoms aren't yet severe enough to warrant any surgical intervention, but enough so that I am trying to become educated. My sister (6 yrs older than me) had a hysterectomy about 3 yrs ago for the same reasons. For now my GYN wants to put me back on b/c, even though DH has had the V just to see if it helps my symptoms. From my reading, it probably won't make much difference. Balloon ablation would be the next option with hysterectomy being the ultimate "cure." My GYN said that pathological study of the uterus is the only definitive way to dx adenomyosis, but she's thinking from my symptoms that it might be what's going on. TIA for any info!

By Kim on Thursday, January 27, 2005 - 07:51 am:

bump

By Karen~moderator on Thursday, January 27, 2005 - 09:39 am:

Thanks Kim!

Pam, you know by now, my life is an open book! LOL I have no problem posting here about anything, unless you would prefer email. If I post here, maybe my experiences can help someone else.

By definition, ADENOMYOSIS is: "Adenomyosis is the presence of endometrial glands and supporting tissues in the muscle of the uterus where it would not occur normally. When the gland tissue grows during the menstrual cycle and then at menses tries to slough, the old tissue and blood cannot escape the uterine muscle and flow out of the cervix as part of normal menses. This trapping of the blood and tissue causes uterine pain in the form of monthly menstrual cramps. It also produces abnormal uterine bleeding when some of the blood finally escapes the muscle resulting in prolonged spotting. It more often occurs in the posterior wall of the uterus."

Ever since I started having periods, I had heavy, painful periods. I was on the pill for a very few years and they were a bit better, but I couldn't stay on the pill. After I had kids, they were so much worse. I'd have 2 week periods, full of clots, pain in my back, abdomen and down the inside of my legs. I had this *full* feeling, and I was VERY conscious of my uterus. I had a laparoscopy, which confirmed endometriosis, they lasered it out, things were better for a few months, then everything returned to the way it was.

I did this a couple of times. It finally got to the point where my periods were coming every 22 days and last 12 - 16 days each so I was practically on a perpetual period. I was losing so much blood and iron I was pretty anemic.

3 years after my last lap, my doc kept telling me he wanted me to have a CAT scan or U/S because he *felt* something. I kept putting it off, then I noticed my waistline was getting bigger and I was having this incredible pain in between periods and cramps that would literally double me over in pain. So I got scared and went for the test. The day after the test I started hemorrhaging badly, this is way too much info, but just to give you an idea, I was going through a super Tampax and pad every 10 minutes, no exaggeration. I called my doc and they rushed me in. He had the results of the U/S, which showed a *large mass* approximately 18 cm in length, and he scheduled me for emergency surgery.

Keep in mind, this was during the first year I was *alone* after my X left us, thankfully I had a wonderful friend in my neighborhood who completely took over, came and got my kids and clothes for several days, kept them for nearly a week, brought me to the hospital, and back to her house after surgery till the weekend when my Mom could come out and help.

I was terrified, thinking the worst, of course. My doc called in Rx's to help my uterus contract to slow the bleeding, and in a few hours I was admitted, and had the surgery. It was *suspected* to be a large cyst, but turned out to be a large benign tumor, it was attached to my colon, left ovary and tube, I lost the ovary and tube during that surgery. I was in the hospital 5 days for that.

Once I recuperated, I felt better for a few months, then the heavy bleeding started again. It was worse this time, and I actually at one point, bled for 6 weeks straight. My doc put me back on B/C pills to try and regulate it. Didn't help, doubled the dose, didn't help, then tripled it so I was taking 3 B/C pills a day. Didn't have an effect on the bleeding, and actually all that estrogen just encouraged the growth of the endometriosis and gave me the worst yeast infection in history. LOL

So after about 8 months of this, I had had enough. I had a total abdominal hysterectomy. But a different doc performed this surgery because my doc had become ill. This other doc didn't laser out the endometriosis in my abdominal cavity and immediately put me on estrogen in the hospital.

3 months after having my uterus removed I was still bleeding. Kept going back. He would alternately try freezing and cautery, I felt like he had totally messed things up and went to another doctor for a *2nd* opinion. Apparently I had polyp growing on the stitch line where my cervix had been and he took care of it right there. He also took me off the estrogen since it was encouraging the endometriosis left behind. Put me on *male* hormones - I can't remember the name - for several months, to *kill* off the endometriosis. They had horrible side effects and I was sick and miserable and depressed, but it worked. And since then, I've taken my regular HRT and felt WONDERFUL!

So, despite this being TMI for many of you that will probably read this thread, hopefully you will get some insight. The hysterectomy did confirm adenomyosis, and obviously endometriosis.

My advice to anyone suffering with this would be:
A) Ask questions!! Ask your doc how much experience he has with this condition and how he treats it and what his *success* rate is.
B) *IF* you elect to have surgery, ask the same questions - how many has he done, what procedure does he use, make sure he will completely check out your abdominal cavity to laser out any endometriosis.
C) Ask how he manages HRT after surgery. I learned that in cases of endometriosis and hysterectomy, it's preferable NOT to put women on estrogen immediately following surgery.

So after all my rambling, my thoughts are that you DO have all of the above, just from what you've described. Believe me, I know how miserable it makes you. And I'm not one to encourage someone to go for the hysterectomy, but what I *will* say is, when I had the emergency surgery for the tumor, my doc asked me, depending on what he found when he got inside, did I want him to take everything then, or just the *problems*? I was newly separated, and even though I couldn't imagine having any more kids, it was an emergency situation and I wasn't prepared to make a decision on something that seemed so *final*, so I told him not to. In hindsight, if I'd had some time to really weigh out the options, I'd have had the hysterectomy then.

Just a side note - apparently these conditions tend to run in family lines, however, with boys, that won't be a concern for you. Jen's having the same symptoms and problems, her GYN thinks she has endometriosis, and she was supposed to have a laparoscopy last month, but she decided not to. I told her that when she couldn't stand it anymore, she'd do something about it, but not to wait too long because she's young, and doesn't want to jeopardize her chances of having kids.

Bottom line - I have felt SO much better since then, and that was in 1994. I'm sorry you're going through this, I know it is miserable. Let me know what you you decide to do.

By Karen~moderator on Thursday, January 27, 2005 - 02:49 pm:

Bumping UP for Pamt.............

By Kim on Thursday, January 27, 2005 - 07:56 pm:

bump

and a jump-in...hope its ok ladies!

I had this too Pam and I had a hysterectomy but they were able to keep my ovaries in. I did not opt for anything but taking out the problem. I had a lot of the same symptoms as Karen. I feel SO much better! Good luck, whatever you decide!

By Pamt on Thursday, January 27, 2005 - 08:53 pm:

Thanks! And yes Kim...the more experiences I can hear about the better. If I do ever have a hysterectomy I WILL keep my ovaries. My maternal grandmother died from ovarian cancer, so my mom and sister had them yanked at the first available opportunity, but hormones are soooo important for so many reasons, so I would want to keep my ovaries. I am also at big risk for osteoporosis which is made worse by the fact I am white, tall, and slender so my ovaries would help fight that too. My GYN is aware of my family hx of ovarian CA and keeps tabs on it.

After my GYN explaining adenomyosis and my research on it I am pretty sure that it is what is going on. I am just surprised that I never heard of it before. Right now my clots aren't too bad--more quarter to half dollar sized and I was reading about a woman having lemon sized clots. Whoa!! My periods are very regular without being on b/c, but they are weird. One month I'll have a 9-10 day period light at the beginning and end with 3-4 really heavy days with pain all throughout my "delicate areas" and inner thighs---aching, heavy pain where I can't stand on my feet very long. Then this month it's been about 5 days total with only one heavy day. It's absolutely crazy. I'm not severe enough to seriously consider surgery yet, but I am afraid that it will be in my future in the next 2-3 years. I just want to graduate first--LOL.

Thanks for the info!

By Karen~moderator on Friday, January 28, 2005 - 08:01 am:

I would definitely advise keeping your ovaries if you can. I only had one at the time of my hysterectomy and there was some problem with it, so I don't have any. I'm aware of the issues with HRT. I took injectable hormones up until last spring. I just got tired of giving myself injections every 3-4 weeks, and you don't have a steady dose doing it that way. Now I take oral and will continue to do so. I am miserable without the HRT. With it, and withOUT my uterus, I'm a happy camper! LOL