Missed DX ???????

I had a Tah.... Sah....on 8/28/02........... Dx was fibroid tumors .....very enlarged uterus....with heavy bleeding for 76 days straight & extreme pain.....I had been DX 5 years earlier....from an ultra sound........I had 5 biopsies, 2 internal ultra sounds...etc....all reports saying I had fibroids .....Drs keep telling me to wait because at 52 I would be going through menopause soon & the fibroids would shrink & my problems would go away.....but they didn't & I finally gave into surgery....
This morning my Dr called & gave me the lab results from surgery.......
NO fibroids...!!!! DX is adenomysis & endometriosis of the uterine wall....ok I am confused .......????
did anyone out there have this problem? or anyone having a Dx of
adometriosis & endometriosis?
I need help understanding this.....!!!!!

Hi... I had a TAH 8/5 and the path report came back with Adenomyosis... it is essentially endometrial tissue growing inside and through the uterine muscle wall. It can cause all the symptoms you describe as well as chronic pain. Imagine bleeding in the muscle wall with no effective way for the blood to get out... this also causes the uterine muscle to stop working well (contracting well) so that results in the ongoing bleeding.

I also have had Endometriosis.. it is where the endometrial tissue is found outside of the uterus (on the uterus or other organs or pelvic walls etc...).

I did have an MRI that diagnosed 2 fibroids in the wall of my uterus... it must have been the Adenomyosis that they saw because I had no fibroids when the surgery was done. I read this can happen.. if the Adenomyosis is bad in a certain spot it can look like a fibroid on the MRI.

Hope you feel better now.

Mine isn't exactly the same...I was diagnosed with endometriosis by my doctor and her colleagues from previous lap w/ laser surgery. The lab though stated that there was no active endo.

I had my hysterectomy and they said the same exact thing, only now they said I have fibrosis (scarring) and inflammation.

Phoebeflower

I do ultrasound, and the tissue changes on ultrasound of adenomyosis can look very similar to fibroids on our various imaging techniques.

In fact, my ultrasound report reported "small fibroids" also seen on CT scan. The pathology report said "severe adenomyosis" and no fibroids found! .

So, yes, I'm not in the least surprised. The thing is, the only treatment for adeno symptoms is still a hysterectomy. In fact, even the "anti-hyst" books that you read will tell you that adeno (which is extremely difficult to diagnose pre-hyst) is one of the "few real reasons" to have a hysterectomy.

Now it's recovery time...you've heard the drill, I'm sure: short s, plenty of fluids (water, preferably), and plenty of .

Good luck!

Audrey

What a shock for you to hear after thinking something else for so long. In your case though, it's obvious that a hysterectomy was your only chance to feel better.

But with regards to other options than surgery, I wonder what happens when fibroids are treated via lap, with cryo or radio frequency ablation and there is NO fibroid. Is the what-looked-to-be a fibroid now destroyed? Wouldn't that leave the uterine wall with a mass of adenomyosis being zapped? That can't be healthy.
And how about those that have the myomectomy but the doctor can't find the fibroid...not to mention the UFE procedure. If they implant plastic into the artery of what they think is a fibroid then the blood flow to that part of the uterus is stopped.

Now you really got me worried MMistyBlu. Well, at least it's over for you and all that stuff is gone! No wonder you hurt so much. I'm glad that you gave into surgery and did not wait another 5 years.

I hope their are no more surprises in your recovery.

Audrey,
thanks for your letter ...this made me feel much better...at least what needed to be done was done & I am now healing....
I didn't mention that in the last 6 years I have had 4 different Gyn's ...one quit her practice for health reasons...one moved to Texas with her husband & 1 I wasn't confident in.....it is very fustrating to have to look for a new Dr when you are in dire need of one.....my new GYN assured me she would be here for at least 10 years.....for this I am thankful....
Thanks again & take care
Misty

Maralyn,
Thanks for writing....!!!!!
I think if I had decided on a different option such as myomectomy my Gyn would have done a lap view first.....I think we as patients need to be well informed & aware as much as possible of our conditions....with the internet at our fingertips there is no excuse for being uninformed as was the case years ago.....even with all of this things can go wrong but at least your chances are better when you know how to ask the right questions & let your Dr know you want to know everything & expect to be involved in all decisions....
Thanks again & take care
Misty

Phoebeflower,
wow that is a pretty vaugue description....It can be very fustrating to be in pain & not really given a clear DX...just as I read that fibroids are not usually painful & I was bent over in pain & two Drs told me to wait & memopause would take care of the problem....so I waited 5 years.....one thing I have learned ....Every Case is different..!!!!!! The good thing is our problems were taken care of & we are healing....
Thanks for your reply...take care...
Misty

SBlumen,
Thanks so much for helping me to understand this....you were a big help..!!!!
I am doing fairly well.....it is long recovery time...& I am impatient...but I am starting a project this week ....one I never had time for before & I think it will help pass the hours plus give me a sense of accomplishment.....
Thanks again ....take care...
Misty