Surprising Post-op results

I just saw my dr and I asked him what he found during the surgery.

Results: 1- No visible active endo (although it was active during my laparoscopy two years earlier- so maybe the Medical menopause worked to make the endo dormant). He said there was old endo, but nothing that he could see that was active. He has always explained that they can't find all of it, only what is on the surface.
2- Ovaries looked pretty good but were covered in scar tissue
3- No adenomyosis - so why the enlarged uterus, i wonder?
4- Inflamed tubes.

I expected something else that would explain why were the periods so painful. I guess the scar tissue or the inflamed tubes could explain the constant left side pain - especially during ovulation. When he suspected adeno, I thought that might explain the periods. I am surprised it was not there.

I guess I can only conclude - which I have read before - endo is a mysterious disease where some women have lots of if and feel very little, and some have a little and feel a lot of pain.

Anyone have any experience like this? I'm really surprised and confused.

Thanks,
Danette

Hi Danette, I think endo is very mysterious. I had tons of endo, but no endo symptoms. No pain at all.
I hope you are doing well!
Take care!

I was surprised by my post op visit as well, especially when I was told he didn't see any fibroids during surgery, no endo as well which I had in the past. Pathology report came back saying no fibroids were found. He removed everything any way which I am upset about. My ulta sound came back as saying I had numerous fibroids. I asked him why it would say that and he told me since my uterus was attached to my abdominal wall it appears on the ultra sound as being a large mass. Sometimes I feel more test should be done to make sure (come to find out that is what the ultra sound report stated, I didn't know this until after) I did have heavy bleeding and cramping, but I think it was because my uterus was attached to my abdominal wall. I should of asked for a second opinion, but I belived what my doctor had to say. I try to be positive and say.. well at least I don't have a period. But, what we go through is major surgery. I think SOME doctors don't listen to thier patients and they jump into things to quickly for money. Needless to say I will never go to this doctor again, Of course it's a little to late. Sorry I just had to vent.

I had an enlarged uterus and the ultrasound showed fibroids. The pathology report after surgery was inadequate. It merely said no cancer found. The dr came out of surgery and told my dh that I had a lot of scarring and adhesions in there - quite a bit of clean up. I asked my dr, "So what was the diagnosis for my enlarged uterus?"

The dr told me not to pay the pathologist until he provides us with a better report. The dr was going to call and order a slide re-read. His diagnosis is adenomyosis, which he is wanting the pathologist to confirm. He also said I had fibroids, and doesn't understand why there was no mention of them in the pathology report. None of the pictures he took turned out, except the one of my appendix.

Sometimes it isn't the dr's fault, the pathology report is just inadequate. It's unfortunate, but true.

Nanch - thanks for responding. Very strange that you had no symptoms - why did you have the hyst?

lp1220 - I am sorry if you feel like your uterus was removed if it was healthy - but it doesn't sound like being attached to the abdominal wall is really healthy. Would there have been any way to detach it and still keep it?

I was very surprised that I did not have adenomyosis. My doctor suspected - and I did, too. He said my uterus was "mottled". My periods felt like 10 days of labor pains. There was no way I could postpone even until January. My husband and I wanted to try for a second child, but I did not think my uterus would be able to sustain it. I am 41 and had a miscarriage four years ago and did not want to go through the heartache.

If you had heavy bleeding and cramps - it sounds like you had some troubling symptoms. Maybe you and I both had endo in places our doctors did not see.

I don't regret my surgery at all. I just had my six week checkup today and all looks good. I am just about pain free (except for twinges). I was in so much pain the last two months before surgery. I don't feel at all like my doctor pushed the surgery. I made the choice when the pain was too much. I had a lot less pain during my "medical menopause" - so I was pretty sure the hyst with ovary removal would be good. So far, so good.

I hope you continue to find peace with your decision.

Danette

Danette, I felt the same surprise with my pathology results. I had severe periods and pain, and all the other classic adeno symptoms (heavy fist-sized clotting, radiating pain to my back and legs, etc.). My doctor agreed, since my uterus was twice the normal size and felt very boggy upon examination. Even after the surgery when he came to visit me in my room, he still felt very strongly that his diagnosis was correct. Then the pathology report came in and found that while my uterus was very enlarged and boggy, there was no sign of adeno. Hmm, go figure. I suppose I'm happy either way (though it would have been nice to be able to point my finger to the problem) since the surgery has solved all the pain and bleeding problems. I would certainly have a TVH again in a heartbeat.

Kim

Danette, I didn't have any real endo symptoms. I have heavy periods that didn't want to stop, and numerous fibroids. My doctor said when I was done letting my periods run my daily life, to let him know. And I finally had enough.

Mel and Kim,

It sounds like we are all in the same boat with having an enlarged uterus but no diagnosis of adeno. Maybe it is the pathologists that are falling short.

My doctor has never before shared his suspicions with me. For instance, I cancelled my first laparoscopy when I thought my pain was from an ovarian cyst and the cyst disappeared. He said, "maybe you shouldn't cancel, because there could be something else going on." If he had said, "I think you have endometriosis", I would not have cancelled. Instead, I ended up having the lap the very next week due to so much pain, and he did find endo (back in August 2001).

He told me when we discussed my hyst (in September 2003) that he suspected adeno - and that really sealed my decision to stop trying to get pregnant and have the hyst. Actually, since my tubes were all inflamed and I did have endo, I think the pregnancy may not have happened. Still, maybe there was adeno there, and it did not show up on the lab report. Who knows?

I hope we all gain a better quality of life through this!

Take care,
Danette