ORS JULY 2010

[wildflowersaz]

I had my hysterectomy 20 years ago, with removal of uterus and both ovaries. I had extensive scar tissue, adhesions, cyst on and around my ovaries and fallopeon tubes...as my dr said it looked like a bomb went off inside. Moving forward occasionally I would feel something like when I had my ovarian cyst would "explode" and I just waved it off and maybe a muscle contraction.

I went to my primary doctor, who sent me over for a ultrasound that day....found a possible lymph node the size of a golf ball on left side. A small 'cyst' on the right side...and one on top of my bladder.

Primary sent me for a CT scan.....which couldn't spot anything on the left side but said a golf ball size on the right side.........then they thought I had a hernia.

Went to surgeon who said YES, you have a hernia, it is not a lymph node,ready to operate but I had to get a cardiology surgical clearance,that lasted another month. I felt if it was a hernia then I would go to my husband's surgeon who had did his a few months before.

Doubted I had hernia. That surgeon didn't feel a hernia......sent me for a MRI (but the insurance company refused to pay for one....dr fought and got it approved).

Results - no hernia....but it was showing a fracture pubic superior fracture (on the pelvic bone)....recommended to go see an orthopedic surgeon..........went to the bone dr........yes, fracture, arthritis in both hips, bursitis in left hip........but the pain he said didn't have nothing to do with what he found..........go see a obgyn........

I said why I don't have anything..........then I started researching............found this site and others.......could it be I have ORS?  I have an appointment July 9th.  

Best of luck to everyone........keep going don't give up.

[Annekathryn Goodman, M.D.]

thank you for your follow up
I hope everything works out
best wishes

[wildflowersaz]

I have all my records (pathology and all). During my hysterectomy I had 9 cyst removed, including fibroids, adhesions, uterus and ovaries. GYN said he caught it just before it turned to cancer. I had painful periods since the time I started at 13. Talked to many GYN's and all said it was in my head or take a pain pill.  It wasn't till a cyst broke during a business meeting and I doubled over I said enough was enough, got recommended to a great GYN, who did a biopsy the first visit...two days later I was in the hospital.  The pelvic sonogram at that time didn't show everything.  It was not till the GYN doc opened me up and he said it looked like a bomb had gone off and wondered how I was even walking with all the pain.  It took a good dr to listen to me and not fluff me off.

I am sure I have scar tissue back, no doubt. All ultra sounds, CT scan, MRI all point to no hernia, but ovarian cysts....advisement from general surgeon and Orthopedic surgeon go see a GYN.  I could not understand why because I had my ovaries removed.

I hadn't been to a GYN in 20 years since surgery...Gyn doc said there wasn't a reason to come back since I didn't have anything.  This doctor is known around the U.S. and he is very good at what he does, so I won't name his name.  If it is ORS then because of the massive problems he encounter during the hysterecomy I can not fault him.  It only takes a cell to get a new ovarian cyst to grow from, or a remnant of the ovaries. It took 4 hrs to do the surgery because of the mess inside.

I almost had a surgery that I shouldn't have had, if I had listen to the first surgeon...thank God for the second surgeon, who ran additional test...no hernia. It would have been really bad to go through a surgery I didn't need.

I go to a GYN this coming Friday and I am going to ask for a pelvic ultrasound be done, if she refuses or doesn't know anything about ORS, then I will move on to a different doctor who will listen to me.

I can't believe in all the medical books there is not one mention of this syndrome.  It should be talked about pre-hysterecomy surgery, what to watch out for.  I have a feeling there are more of us out their.

Yes I have been through alot....the cyst are growing, just like I said in the first ultra sound I said it felt golf ball size.......sure enough the ultra sound pulled up a golf ball size cyst on left side.......and she took pictures of the right side, there was another one that I slightly felt.......now through all the test....the right side is hurting as bad as the left side and it is now golf ball size according to the MRI (golf ball size is my term of course). Plus they found another one by my bladder (that is why I am sure I am peeing alot the last two months) that is growing also........plus the scar tissue doesn't help.

My primary and the second surgeon are concerned for me and call me up to check on me......believe it or not.......primary said I am on the right track to go to GYN about this ORS......they are both puzzled.  Which is not a good sign..........my body is wierd!  Even my gall bladder wasn't where it was suppose to be...they almost lost me on the table and surgeon then said he was about ready to give up....he didn't finish xraying the common duct but found the gall bladder way up high under the liver........so see......my body is wierd!  

Thanks for your questions.

[Annekathryn Goodman, M.D.]

Hi There,
wow, you have really been on a journey. One thing I get is that it is not obvious what is going on.
Do you know what you had the hysterectomy for many years ago? Do you know what the pathology report from that surgery said?

If you did not have a cancer, then several things could be going on now:
you could be experiencing a long term consequence of abdominal surgery such as adhesions which give you pain or a weakening in the wall of the abdomen which is called a hernia.

Or you could have a completely different problem. You mention a bone fracture. If you have been postmenopausal for several decades, you may have developed osteoporosis. You may be at higher risk for a fracture.

Finally, you could have developed a completely new problem such as a new intra-abdominal process.

When something is this complicated, it is best to gather up all your information - operative notes, pathology reports, recent scan reports and go to someone wise (such as hopefully your PCP) and look through everything.

Is there something we are missing? What is your pelvic exam like? Do you need a pap smear? How about a colonoscopy and mammogram. Are all those screening tests normal?

After a good think about all that, it may be clear what your pain is from
best wishes