Was anything unexpected found during your hysterectomy???

Hi, I am scheduled for my TAH, BSO and cervix removal. My doc suspects ENDO, ADENOMYOSIS and I have PCOS and at least 1 fibroid...and an enlarged uterus.

Ever since we've been trying to get my hyst. scheduled I have been stressed and extremely worried that once my doc opens me up he might not find anything and then NOT do the hysterectomy. I worry that maybe I have just been imagining the pain and other symptoms that I have been having over the years, such as the extremely heavy periods.

Do or have any of you ever felt like this??? Did the doc ever find nothing??? Or did they find something they weren't expecting???

I would really appreciate some input on this I am getting really nervous and my husband keeps telling me I am acting like I am nesting , like when I was pregnant with my 4 year old....by wanting everything ready ahead of time especially when I won't have any help really when I get home from the hospital.

Have you ever had the experience of being in such extreme pain that you begin to believe that you're making it up? This has happened to me on a few occasions. One of them I was passing a kidney stone. Another was a rupture in my uterus when I was 31 weeks prego. In other words, these were real and very painful occasions.

And the same goes for you. You've battled pain and bleeding and all the other horrible stuff to such a degree that now you don't even know what's real anymore. They aren't going to find NOTHING -- that's impossible. You do know that you have a fibroid, don't you? And the rest of the story will come out after your surgery.

Good luck getting scheduled and getting through -- I'm sure you'll soon be feeling like a new woman.

my dr found more wrong with me than we expected. i expected to have a tah/bso. that was what was done. {{{hugs}}}

Thanks Genie. Over the last 6 years I have had at least 10 miscarriages, all but 2-3 of those were very early (4 weeks), but I am late for AF now by 2 weeks and last Friday I was in such extreme pain I couldn't really walk to the bathroom and had tears streaming down my face in front of company (a guy my hubby works with) and I felt like I did when I m/c'd a few years ago at 12 weeks. I just kept wondering if I was really just imagining it.

I am glad to know I am not the only one who wonders about their sanity...lol.

After every test they ran I expected someone to come back and say "oops, nothing there". I think it was more of a hope than anything else. I start thinking that maybe all the "signs" were normal, maybe that polyp they found just needs removed and that's it, maybe it really IS nothing serious. But each test confirmed that yes, it's more than the polyp itself, yes it's still cancerous, and yes, it's growing little by little.

I think it's normal to hang on to that thought of "Maybe this is really nothing at all".

Hi LaShawn,

Yes, I felt exactly the same way even though I had been diagnosed with endo back in '01 when they removed my right ovary and tube due to a 10cm cyst. When they got in they found Stage IV endo that they said had I had probably had for years and a ton of adhesions. I have three sisters that had endo and I had suspected for years that I had it as well but ignored the symptoms. My first OB/GYN was afraid to do a hyst because of all the bowel adhesions so over the course of four years I was on alternately on Lupron with addback and BCPs. When I switched doctors and had the hyst scheduled I was in unbearable pain, but my ultrasound came back showing nothing major so of course I thought it was all in my head as well. What definitely wasn't in my head was all the pain and weeks of constant heavy bleeding, though. My doctor told me that it was ultimately my decision, but what I had to look at was my quality of life. Those three words hit the nail right on the head for me. I can't tell you how many events with family and friends I had missed due to the constant pain, but even worse was the emotional pain I felt due to having to let my daughter down so often when she wanted to do things, go places, etc. I didn't want her memories of me to be: "Mom was always sick." Thankfully when I got the pathology reports back it turned out I had endometriomas on my remaining ovary, fibroids, polyps, endo in my cervix (which is rare), a cyst on the remnant of my right tube and my uterus was completely fused to my bladder with adhesions! He said the endo had calmed down some due to the Lupron which made me feel better as the Lupron was NOT fun, but there was still plenty of other stuff going on. What a relief to know I had made the right decision! I don't regret it a bit. What I do regret is not doing what you're doing right now - getting everything ready ahead of time! I was in such denial about it and part of me kept wanting to cancel the surgery so I didn't feel the need to prepare - oh, how I wish I did! My house is a mess, my laundry hasn't been done, my DH and DD just went grocery shopping after promising to do it a week ago, etc. I have to stop myself constantly when I want to start cleaning, etc., as I know I will end up paying for it in the end. So keep cleaning, organizing, etc.; trust me, you'll be glad you did! Best of luck to you; I'm sure you'll feel afterwards that you definitely made the right decision - if nothing else, you won't have periods to deal with anymore! Take care, this will all be over with before you know it!

Barbara, your experience has helped me tremendously. I really appreciate your taking the time to tell me about it. I had my u/s about 2 weeks ago. The doc said he didn't see anything all that worrysome, but left it up to me if I still wanted the TAH, and I said definitely. I am ready to be rid of the constant pain and burning feeling in my stomach. To be rid of the diarhea nearing and during af. To be rid of this swollen belly (the fat is enough...lol). To be rid of these horrible af's...which have lasted as long as 15 weeks in a row with very little of that light bleeding or spotting.

How long do have to wait to get the patholgy reports ??? And do you have to ask the doc to see them or do they give those to you automatically???

I had a clean CT scan that indicated only an enlarged uterus, three pelvic ultrasounds that inidicated only an enlarged uterus, a pelvic that indicated only an enlarged uterus and a CA125 that returned normal results--though I was still plagued by constant reoccurring pain, abdominal swelling, back pain and constipation. I got to the point where I just couldn't ignore it anymore (though, I doubted my decision too--what if its really NOT that bad?) Well, when they got in there it was another story! Adenomyosis-uterus 12 week size--with an added bonus stage IV endometriosis that has attached my left ovary to my bowel and covered the cul de sac and bowel. Now I'm so VERY glad I had this done, should have done it SOONER! I will still have to deal with the endo issues, but I won't struggle with the periods or crowded organs that the uterus had caused.

I'm so glad to hear that; this site has been such a help to me and if my experience can help even one person I'm happy to share my story anytime. The thing about ultrasound is it that it just picks up shadows, fluids, solid tissue and empty spaces through sound waves, so it can't tell you everything that's going on, and in my case I had a large scar from my previous surgery and c-section that they said made it hard to see much of anything. I'm so sorry to hear of your past miscarriages, what a horrible thing to have to go through. Obviously you've dealt with this a long time so I'm sure you'll be happy you made this decision. Actually when I had my first post-op appointment at one week the first thing the doctor did was tell me we were going to go over my path report; I don't think I ever had to ask for it. He even gave me a copy which was very helpful as I was able to show my husband and then didn't have to worry about forgetting anything important - no doctor has ever offered me this info before! Make sure you ask though if he doesn't mention it; also if your post-op is later than one week you could probably call and ask for the results earlier. Good luck!

We went into my surgery, thinking that my only issues were a thickened endometrium and one fibroid. It turned out that my uterus was, in my doctor's words, "packed FULL of fibroids." I'm not sure how many that means, but it did mean that a lot more was going on in there than had ever shown up in any of my tests.