? About not knowing....

Hello all, I am writing because I was wondering if anyone has had as many possibles as I do. I am scheduled for a TVH possible TAH, cystectomy, possible BSO. My surgery is on the 30th. It's a little scary not knowing what is going to be done. She would like it to me TVH w/ cystectomy. But as my uterus is "bulky" on top and the size of my cyst she doesn't know if it will be possible to take care of it vaginally. I like to know what I am heading into, and not knowing is freaking me out a little bit. Anyone experience this before??

I'm sorry you're dealing with so much uncertainty.

If it's any consolation, many of us go into surgery either not really knowing what's going to happen or we find out afterwards that things were different than the surgeons thought they'd be.

My surgeons *thought* they could preserve my ovaries, but they didn't know what they'd find during surgery. (They stayed.) They *thought* I had two fibroids. (I had over 30!) They *thought* I would have two incisions -- one vertical and one horizontal. (I ended up with one horizontal incision.)

No matter how many ultrasounds or other scans and tests are done pre-op, there's always a chance that something additional will be found or that a wrinkle will come up. In my case, they found that my uterus and bladder were severely adhered to each other, which added an hour to my surgery time.

I wish you the best for your upcoming surgery!

I had a very similar situation to yourself. It helped by reading all of the stories that people wrote about their experiences in the "tell your story" forum. I read them ALL so I would have an idea of everything that could happen and what it would be like. I also had my husband ask the dr. what type of surgery I had and if he left my ovaries. That way my husband could tell me as soon as I got out of recovery since I didn't know when I would see my dr.

I had a mouthful to repeat before my surgery when they would ask me what I was in for. I know that it's part of making sure everybody is on the same page, and they are doing the correct surgery, but it was a lot to get out every time somebody new came by and asked.

Mine was an exploratory laparoscopy with possible fulgaration of endometriosis, possible laparoscopic supracervical hysterectomy, and possibile unilateral oopherectomy. Lots of possibilities.

I'm typically the type of person who wants to know exactly what is going to be done. But I also didn't want to have any more surgeries than necessary (ie, he could have done the exploratory lap first, then scheduled another if we decided to do anything else). And I knew some decisions couldn't be made without seeing what was going on inside. I ended up finding a doctor that I had total trust in. I believed that he would make decisions while I was unconscious that were medically in my best interest, as well as what I personally would have chosen if I had the chance.

Talk to your doctor beforehand to make sure you are comfortable with all of the "ifs" that she is considering, and also to make sure you feel comfortable with her making decisions in the case that something unforeseen comes up. Then it's just a matter of faith.

Best of luck to you. Take care.

If you think about it, all of these surgeries have the unknown attached, just to different degrees. With most LAVHs they will check out the ovaries while in there and if they are diseased "enough" then the doc. will take them too. They don't know a lot until they can visually see everything. Sorry I couldn't be more help.

Take care,

Kara

I went through that too -- hoped for an LSH, but knew I might end up with a TAH, depending on what they found. Turned out I had no endometriosis but my fibroid was bigger than they thought, and too low for them to leave my cervix.

My advice is to read what you can about the procedures in general, but don't read too much -- you will drive yourself crazy with the "what ifs".

Also, prepare for the longest possible recovery time (being off of work, having groceries in the house, stuff you can easily prepare, someone to stay the first few days, people to visit for the next couple weeks especially if you live alone, stuff to do to keep busy, nice restful bedroom and couch area to relax and sleep well, etc.).

And have someone with you who will write down everything the docs tell them after your surgery is over. You will be groggy and maybe nauseated, and might not catch everything, and not be in any shape to jot stuff down. Of course, once you are more "with it" you can ask them again for details, but your mind will be eased once you know for sure what the surgery was, specifically.

(I add that last paragraph because I had my father with me. He's awesome, but really had no clue about what endometriosis is, what the different types of hyst are, etc. When I woke up he sort of knew what they'd said, but hadn't written stuff down, so I knew I'd need to ask the nurses later, etc. even though I got the gist of it from him. :P)

I went in expecting to have *just* a myomectomy, but my doctored had prepared me, as best as he could, for the possibility of ending up with a hysterectomy. As a previous poster stated, ultrasounds and other tests can only show so much. But when the surgeons actually get *in there* things may be different than expected. It turned out my tumor was actually a large"colony" of lots of tumors, and suspicious cells had spread well into the cervix. So I woke up being gently told they had to do a total abdominal hysterectomy (TAH). Ovaries are okay, so I still have them. Also was told that because of the size and location of the "colony", my bladder got nicked which caused me to need a catheter for the next 12 days. Before surgery, I had prayed that whichever way things went, that God would give me the grace and strength to handle it with a positive attitude. Now that it's been six weeks since the surgery, I wonder why I was so against a hysterectomy. I feel fine, and can honestly say I'm thankful for how it all turned out.
just pray that whatever is the best for your longterm health will be what God allows to happen for your surgery.
Good luck!

	Quote:
Originally Posted by Piano4 I went in expecting to have *just* a myomectomy, but my doctored had prepared me, as best as he could, for the possibility of ending up with a hysterectomy. As a previous poster stated, ultrasounds and other tests can only show so much. But when the surgeons actually get *in there* things may be different than expected. It turned out my tumor was actually a large"colony" of lots of tumors, and suspicious cells had spread well into the cervix. So I woke up being gently told they had to do a total abdominal hysterectomy (TAH). Ovaries are okay, so I still have them. Also was told that because of the size and location of the "colony", my bladder got nicked which caused me to need a catheter for the next 12 days. Before surgery, I had prayed that whichever way things went, that God would give me the grace and strength to handle it with a positive attitude. Now that it's been six weeks since the surgery, I wonder why I was so against a hysterectomy. I feel fine, and can honestly say I'm thankful for how it all turned out. just pray that whatever is the best for your longterm health will be what God allows to happen for your surgery. Good luck!

What a great attitude! Inspiring.

Kara

I went into surgery knowing that I would have a hysterectomy and that my right ovary was coming out because of a cyst. What nobody saw in 20 years of testing was that I was wall to wall endometreosis. It never showed up on any of the CT's or ultrasounds. Because of that, I was in the OR for 5 hours while they took it all out, including my left ovary. Nobody knows for sure what will happen in the OR, even if they know everything that is being done and it is "textbook". Have a flexible plan for recovery and be reassured that anxiety and fear are normal for the pre-op period.

I hope everything goes well for you.

Thank you all for your advice and encouragement. I know that they are just preparing me for anything that may happen. It's just so nerve wracking not knowing!! I know that they will do whatever they need to do to safely remove all that needs to be removed. I even have a funny feeling that they may find more than they think they will. I have always been very in tune with my body, and know that there is a little more going on than they know. Heck, the last 3 ultrasounds I had they couldn't even find my right ovary!! Thank you all again. I guess I will know in just 72 hours....