post op, but more questions than answers. Please help.

I can only imagine how you feel about this. It took all my courage to do my surgery, and I can't imagine having another one for a long time.

I had a colonoscopy in March because my sister had been diagnosed with colon cancer, and I was freaked about that from Dec. '05 (when she was diagnosed) to March '06, and then spent from March to my surgery in July freaked about the hyst. I don't think I can stand that kind of stress again.

I hope that the ruptured cysts were the cause of your pain, and that now you'll feel better. I can't offer you any advice, only some 's.

Jan,
I fretted overa colonscopy forever, but finally had one without any meds. Even though the dr said that it was a very difficult one and she couldn't have done it, it was a piece of cake when compared to being hooked up to an IV.

I hope that you are right, but then why didn't she take the other cyst?

Are there any questions that I should be asking? I'm trying to compile something that makes sense.

q

I guess the first thing I would do is go to the hospital and ask for a copy of your surgery report. I've read other sisters say that you can get a copy from the hospital.

Then I would sit down with it and a medical dictionary, which you can find at the library.

The questions I would ask are:
Exactly what was done in the surgery?
What did she see that made her leave your uterus and the fibroids?
Does she have the pathology report back from the cyst, amd what did it say?
How many fibroids were there? and how big were they?
Why did she leave the one cyst?

If she is just a surgeon, then you may have to go back to a GYN to get the scoop on what the recommendations are for your situation.

Please let us know what you find out.

I'm praying for you, that this will be solved quickly, and you won't need any additional surgery.

Dear q,

If you refuse IV, meds and overnite hospital stay, you may have a hard time finding a doc who will do a hysterectomy. I would think it would be a huge liability issue for them

I hope you are able to find the ruight answers soon. I am sending huge cyberhugs

Twy,
For surgery I didn't refuse IVs, just asked that they be put in just before surgery and taken out after. Both were agreed to, neither was followed.

I agree that the overnight stay may be a problem. However, I know what I can handle. I cried for three hours straight before surgery. A stay with ivs would not be a good thing.

I am allergic to just about every pain med, but the only thing I refused was the med that makes you lose your memory. Ironically, I can't remember its name right this minute.

They gave me only tylenol before surgery to work after surgery, no iv pain meds other than what they put me to sleep with, and no post op meds to take home. My husband had to drive all the way to the hospital the next day and get something for me.

Jana,
I have been thinking about getting my records. I guess that I can call and ask for them and then pick them up that day, but the hospital is too far away for me to get them before the appointment.

Those are good questions. I did ask her about the fibroids. She said she couldn't tell how many there were, but saw one large one.

Thanks for your help,
q

q
There are a few stories here that I follow and yours is one. I'm glad you survived your surgery - although your Trust in Doctors may have been killed.

I thought that, before your procedure, you were told that your uterus was inexplicably large - (that was you, right?) For starters I would ask for an answer to that question - why is my uterus enlarged?

Also if you can possibly ask why things were done differently than was agreed upon, it might help you deal with feeling betrayed by your doctors. If it ends up looking like you were out-and-out lied to and manipulated, then your anger is justified. But if they can support their actions (and non-actions) with sound medical reasoning, that would give you cause to trust them. Why didn't the second surgeon show up? Would things have gone differently if they HAD shown up?

A lot of sisters here have said it turned out their pain was due to adenomyosis which was not confirmed until after the hyst. Did your procedure rule out adeno? From what I've read, the hallmark symptom is pain.

As for how to proceed, I guess it's just a matter of choosing the "lesser evil". Does your fear of surgery exceed your current pain? Do you feel that the pain is coming from your uterus? If you and your docs aren't 100% sure, are you willing to give up your uterus "just in case" to see if it may reduce/eliminate your pain?

Also q, I might be confusing you with some other sister, but didn't you have some other medical issues? Fibromyalgia or MS or something? If so, how would that be affecting your pain perception here? Could a fibroid cause more pain in a person with FM?

So in case you didn't already have too many questions, there are a few more for you! There MUST be some answers. Until you find them I wish you Peace.

Jan, You have a very good memory. I am humbled that you would follow me.

I will try to answer your questions.
1. Yes, I wasl told that my uterus was large pre and post op.
2. I don't know if adeno was ruled out, because I don't know if the dr was looking for that.
3. My other condition is kind of muddy. It is Parkinson's or parkinsonism. My local neuro didn't give me a dx until about a month ago as viral parkinsomism, but since then I had a very bad freezing episode this last week, which, to me, points more towards regular Parkinson's I can't see where the two are related, but then I'm not a dr.

I think that what happened is that they called me in early, so even though my surgery actually came at the scheduled time, perhaps the second surgeon (the ob/gyn) wasn't told.

Anyway, the general surgeon somehow thought that the obgyn was only going to do something if ca was found. She, herself, was only looking for adhesions. She only found a few adhesions, too small to worry about so she left them.

She did find that two cysts had burst and she vacuumed up the liquid (and sent a sample in to be analyzed). She asked another obgyn to step in and to look for ca. He didn't think that there was any, so that was that.

Thanks for your interest,
q

I agree with the other posters. You need to get a copy of the surgery report and any accompanying pathology reports. That way you might know what the cysts were comprised of. Also, did they do a hysteroscopy also or just a laparoscopy? It is my understanding that not all fibroids can be diagnosed by merely looking at the outside of the uterus when they insert the laparoscope in the navel. So, unless they scoped from the vagina also, you may not have a proper diagnosis.

I also agree with the poster who mentioned the difficulty of finding a surgeon to deal with your phobias. Perhaps they feared your reaction if the did do a radical hyst and you realized that you would be overnight in a hospital and hooked up to an IV. IVs and hospitals can be very intimidating, but you need to ask yourself at what cost? Is enduring the pain worse than a stay at the castle and an IV?

Hugs to you. I can't even imagine how difficult this is for you...

Knitty,
Thanks for taking the time to answer my request.

I just got back from the general surgeon's (post op visit). She was sorry that I was no better.

The ob/gyn had told her that she wasn't planning on doing anything unless she found ca. I guess that is why the general surgeon decided to go ahead with the surgery.

I told her that I wish that someone had told me, as I would probably have canceled the surgery (the general was not comfortable doing a hysterectomy).

I told her, and my husband stood up for me, that I had told the obgyn to take out anything that could be causing the pain. Before she left the office, she said, "Now let me see if we are in agreement. You only want me to do something if it is ca." Kevin and I both, emphatically said, "no" and explained again.

I called her office about something and found out that she was still not planning on doing anything unless it was ca. I left messages that reiterated what I had said and also to ask for a hysteroscopy. I never got a response, so I believe that I called the general's office. I know that I told the anesthesiologist.

Anyway, it is over and done with.

I honestly don't think I will be able to go through with another surgery. I am very frustrated.

q

q- I am so sorry this happened. Maybe your next step is some sort of pain management plan? Are there any pain clinics in your area? Just a thought...