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Unread 04-21-2003, 06:13 PM
second hysterectomy

Hi everyone hope you are having a good day. What I want to know is there anyone that has or know of anyone that has had this problem. I had a hyst 7/02 my ovary, tube and uterus were removed for endo. In August I started having pain just like before the hyst. Each month the pain increased. I was also being treated for a bladder infection each month. I could not believe all the pain I was in was coming from a bladder infection. The pain lasted for also three weeks. So after complaining about the pain month after month my bladder dr. order a ct scan. After the ct scan a u/s was order it seem as if i still have part of my ovary and uterus. So I changed gynecology since she had not oder the test to started with. I am have a hyst in June. I truly hope there is no one else out there with this problem. Please pray for me.
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Unread 04-21-2003, 06:29 PM
second hysterectomy

I'm so sorry you are going through this. I am new to this site, and have not heard of anything like this. I am not a doctor, but this just doesn't sound right! Best wishes for a speedy recovery. I hope you are feeling better soon!
Unread 04-21-2003, 07:24 PM
A second surgery?

Wow, I was amazed when I read your letter. I would go for a third opinion if I were you. That is just totally bizarre if they told you the first time they took the ovary, ute, etc.
I really think I'd get a 3rd opinion to see who is right here. Good luck to you. I hate to hear you have to go thru surgery again, but I'll be thinking about you and praying for you.
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Unread 04-21-2003, 07:51 PM
second hysterectomy

I have never heard of that happening. I'm sorry you are going through this. One hysterectomy should be enough for anybody. Do you know how much was left? Was it very tiny pieces and the endo grew and caused the pain? I will pray for you.

Unread 04-22-2003, 11:14 AM
second hysterectomy

Hi Sulene,

This does sound like a case for the record books!

Can you tell us a little more about your original hyst? Was it done vaginally or abdominally (or lap)? Your signature indicates that you had severe endo ... is it possible that you had very dense endo and adhesions and that is how fragments of your ovary and uterus were missed? (Especially if your hyst was done vaginally ...??)

Any idea how much uterine and ovarian tissue is remaining?

One other thought I had ... have you considered seeing a gyn oncologist? They are such highly skilled surgeons, I think it might be a good idea to at least get a second opinion from a gyn oncologist.

I had severe stage 4 endo and a gyn oncologist did peritoneal stripping during my hyst to remove all the endo and adhesions ... this was at my gyn's suggestion and I believe it made a huge difference in my recovery. (I'm doing great at a year and a half post op.)

Please keep us posted on your plans and how you are doing. Sending gentle hugs your way.

Unread 04-22-2003, 07:41 PM
Hi Sulene......

's to you. I'm sorry you are going through this. No I've never heard of this happening. Only thing that comes to mind............ During your first hyst..did you keep your cervix? I have heard that the uterus and cervix are actually one organ......the cervix is just the narrower portion that leads into the vaginal vault and there is no dotted line between the two so when a hyst is done and the cervix is kept it is really up to the doc to make a distinction as to where to make that it possible that he just left TOO much of that cervix behind or are these actual fragments of uterine tissue that are free floating in your abdomen? No matter......I agree with the other sisters and I would DEFINITELY get another opinion before scheduling or going through with surgery.......another thing that comes to mind is HOW is your insurance going to react to another hysterectomy? Hmmm? If it turns out that this is the fault of the first Dr you may want to request that he pay for the surgery to "finish" what he started.

I wish you all the best and will keep you in my prayers. Good Luck.

Unread 04-22-2003, 11:15 PM
second hysterectomy


I have never heard of this happening either, but I will tell you that for the past 3 months or so I feel as though I still have my organs because of the recurring pain. I would not be surprised at all if I had something left in there.

I would definetly do as the othere sisters recommended as far as finding a new Dr and having the OLD one pay for the surgery since he did not do what he was suppose to do.

Please keep us posted on this one. We are ALL very curious as to what they will find..

Unread 04-23-2003, 12:03 AM
second hysterectomy


! I can understand how taken aback you must be at this turn of events!

Here's a (somewhat educated) guess as to what has happened here: first of all, you say that you've had severe endo, but I can't tell from your signature whether the ovary taken in your most recent was your only ovary?

Even if you've had your ovaries (supposedly) removed, as ((Dawn 33)) and ((Toolgrl)) can tell you, portions of ovarian tissue can remain behind. And they may not choose to grow where ovaries normally would be, so it can be quite tricky on C-T and ultrasound (even transvaginal) to really know what sort of tissue they're seeing.

I heartily second ((Beth's)) recommendation of a GYN-oncologist. They are trained and certified in performing far more elaborate surgery. And, frankly, ovarian remnant in the face of severe endo and adhesions from prior surgeries, is not easy.

As Dawn points out, if you kept your cervix, they may well have left some uterine tissue behind. And all the shifting around that intestines, etc. do following a hyst can be quite confounding on C-T (even if you had oral contrast) and ultrasound.

Since your date isn't until June, I recommend you request a second opinion and a referral to a GYN-oncologist. Even though they're not suspecting cancer, something like this is definitely left to the hands of expert surgeons who are capable of doing whatever type of surgery may be needed.

Good luck to you, and PLEASE -- call tomorrow to ask for this referral. It may take you out of town (I had my surgery at a hospital 30 miles from my home, although many excellent facilities are far closer) but make sure that you get that second opinion.

And do a search on-site here for "ovarian remnant", where you'll find several ladies, including Dawn here, who've experienced the same. Also, take a look for posts by BobbySueZQ who wound up with a "stray fibroid" as her signature says. You'll see that there are a number who have had similar scenarios.

See if you can get a copy of all surgical and pathology reports to take to a consult with you. That information saves so much time. Close reading of my pathology reports shows that they found a "cyst with some ovarian tissue" -- but no real reference to a discrete left ovary. Chances are there are scraps for me too, I wouldn't be surprised. It's hard, in the face of severe endo and adhesions from prior surgeries, to truly be able to eliminate all bits of tissue during the average hyst.

But oncologists are accustomed to going after every last scrap of possibly abnormal tissue, and they're much better prepared for the meticulous surgery this might require.

BTW, I would definitely include a gyn-urologist in your search for information. It sounds like you have a urologist. Endo could well be creating your current symptoms, or interstitial cystitis, endo's close and evil cousin.

I truly hope you finally get some answers. A GYN-oncologist would be your best ammunition against ever having to do this again. And don't forget that training! You need to do what you can in the coming weeks to pamper and strengthen yourself -- eat well, rest as much as possible, try to recognize stress triggers and do what you can with meditation, prayer, exercise to deal with them.

Lastly, if you are on any form of HRT, your doctors may wish to alter it prior to your surgery. I would also discuss this with any and all second opinions. Your doctors should also run some labs to see if there's any chance this tissue is hormonally active: an "FSH" would be lower in someone who is still producing hormones. Those of us in full-blown surgical menopause have high levels of this hormone in our system.

It's going to be a long road, Sulene, but, as you can see, you're not the only one. Endo is a horrible thing that can distort our pelvic anatomy much as a cancer can...and the treatments are far less effective.

You take care, sweetie,

Unread 04-23-2003, 08:47 PM
second hysterectomy


I am so sorry to hear that you have these complications from your previous hyst. Are they certain these are actually parts and not returning endo or adhesions?? Just curious as to how your previous DR could have missed this?? I hope your surgery in June will answer a lot of questions you must have right now. Please keep us posted okay?


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