I need to vent

Hi
I need to get this out so I can move on. It is kinda long and I apologize in advance. I am waiting for my 4th surgery since last sept 08. I have been in daily pain since 3/07. 1 knee other 2 pelvic. Next will be a revision of my cuff and exploratory. I may have a prolapsed fallopian tube sticking out of my vaginal cuff. Since about 10 days after my LAVH on 1/5 I have had pain with sitting. On really good days I can sit for 5-10 minutes to be social but pain the price later. Bad days only position tolerated is supine. I have spent 75-85% of this past month in bed.

I've been in PM since 2/09 and 5 weeks ago got significantly worse resulting in my changing doctors. The new doctor ordered tests and referred me to a colleague for additional consult, I started with a new PM doc that helped get the out of control pain under control. Although the CAT and US do not show anything they feel surgery is warranted based on clinical exam to revise my not yet healed cuff and exploratory to search for root cause of pain. Surgery was scheduled for June 30th.
I went to pre op 2 days ago and the pre op nurse wanted clearance from hematologist due to history of asymptomatic Von Willebrands disease. I told her I it was never required before. She made an appointment for me to see the hematologist in the morning and assured me the surgery would go as scheduled. That it was just protocol.

I went to the appointment not expecting much. I've had 4 other surgeries, dental work and vaginal birth since diagnosed and no one ever was concerned. I was shocked when the doctor proceeded to tell me he was unable to clear me for surgery without a complete blood study. He acknowledge my risk was very low and my previous diagnostic numbers were nearly normal and I do not have any symptoms.

The test can not be performed before next Monday and priliminary results take take days to be ready. He said to call in a week to get the what result that are in and then he'll make a follow up appointment to discuss all the results when there back from the lab. In the mean time he said he would speak with my surgeons. He said outright he was not canceling my surgery. I begged him to find an alternate means, I told him I would sign a waiver. Anything to keep the surgery date. I explained to him the surgeons work in two different practices and have opposite surgical dates. My booking next week was a special slot they received clearance from the hospital to book.

I spoke with one surgeon yesterday evening and he told me he and the other surgeon are aware of the situation and they would be conferencing with hematology this morning. He mentioned Pandoras' box was opened but there was a small chance surgery could go on as planned. I told him I would sign a waiver.

My other surgeon called this morning to say the surgery was a 'no go' for next week. He was going to called the other surgeons office today to try to find another date. He expressed how frustrating the situation is and sounded very angry. He made reference to it being useless going over how it got to this point. I agree - I'm assuming he was angry at the situation and the hematologist - not me, right?

I am so upset. The pain is getting worse by the day despite all the medication. Lying in bed is painful. I was just getting by knowing that all I had was one more weekend to get through. I don't know how I'm going to manage weeks more of this.
It would be easier if I truly believed the hematologist was holding clearance for my best interest but reality is he is covering his butt. He was playing with words when he said he was not canceling my surgery. No, just delaying it and leaving the actual cancelation of plans to my surgeons.

More than once yesterday he asked me if I saw the results of my CAT scan and US. He kept referring to the fact no abnormalities were found. He made reference to what will the be performing surgery on if tests were normal? He wanted to know what I expected from surgery. He told me the surgery would not resolve my pain and asked why I had not seen a neurologist yet. I explained to him that despite the lack of abnormal findings on the diagnostic tests the surgeons were basing the decision to perform surgery on my clinical exam and presentation. I told him my vaginal cuff was still not healed fully and it had areas of scar tissue and granulation as well as something sticking out that may be a prolapsed fallopian tube. I also told him the US was excruciatingly painful and that told the surgeons something was not right and warranted further investigation. I made it clear to him the surgeons have informed me I may still have pain after the surgery. But at least I will have a normal vaginal cuff that has the opportunity to heal correctly.

When we reviewed my medications he admitted he was not familiar with some of them, Skelaxin for one. I underwent a complete physical exam and had to explain how I received the dime sized bruise on my right shin. He was concerned I did not specifically recall the injury. What? I banged into something.

He explained to me this surgery is elective and does not need to be hurried as an emergency surgery would be. So we have time to do the necessary tests to ensure all the information on my condition is gathered. So in hindsite I do not think he appreciates the level of pain I am in. Despite watching me sit for a minute and the stand or pace. The nurse ask for a pain scale and I told her a 6/10 and climbing. I made it clear to him that the pain is constant despite increased levels of pain medication and is forcing me to be almost completely bed bound. It's amazing they all say OMG your in that much pain and then do nothing about it. I think they believe I'm faking and misinterpret the tears that just come from my eyes as emotional crying.

I have been asymptomatic my entire life. Diagnosis was made originally via a mistake in lab work. I've had 4 vaginal deliveries and 4 major surgeries, tooth extractions and other dental work without bleeding problems or meds. I do not have a history of uncontrolled bleeding, I do not bruise. NO ONE else has ever made an issue of this.

Now next Monday instead of doing my planned bowel prep I have to be at the lab at 8 am for extensive blood work. I do not tolerate car trips and sitting is torturous. I managed this week with the daily trips knowing it would take me one step closer to relief. God help me but I hate this man for making me go through all of this. He could have taken my old numbers and sent me for a DDAVP level check instead. (PS original diagnosis made by a pediatric hematologist that is now retired but worked within the same hospital system with an office within walking distance). He should be able to access all the records. This delay has more to do with liability than good medicine.

I can't imagine what effect this will have on my children. They have been going through this also. Since Oct I've had a total of maybe 2 weeks that I've been actively being their Mom with daily activities. They've been taking care of me for to long. The stress is evident just looking at my husband these days. Its been five months of you're a slow healer followed by this month of you will need another surgery. Now back to waiting.

I feel like screaming but just cry instead. Now they are being to cut a giant tree down from in front of the house next door. The tree has been dead for years. I had to close my windows and the bedroom is loud and hot. Why today?

I need to figure out how to move on from this. It is going to be such a long weekend wondering when I will have surgery. I hope my surgeons haven't planned July holidays. I need to have this surgery now!

Thanks for sticking with this post to the end.

Hope09, I can't believe all the probs you are having. It must be unbearable.Our system where I live in England is you go for pre assesmant and have tests on same day and give them back to pre ***. nurse. I had ecg, breathing tests for lung function, blood tests, mrsa test and xrays as I have bronchtiactasis. The nurse tried to contact the anesthetic man on the same day, but he spoke to me at length about any probs before my op. You seem to have a lot more medical concerns than me but I hope you get your surgery next week and everything goes well. I don't know what I would have felt if mine had been postponed, I was terrified to have surgery anyway. x

You poor thing! Hopefully you will have your surgery soon and you will be out of pain soon!

Try to hang in there!

Best wishes to you!

Big hugs for you, hope. So sorry you have to go through this and be in such PAIN. It does sound from what you said that for some reason this one doc wants to make an issue of your von W's disease, maybe as you said a worry more about liability than a true risk. If they can reschedule you quickly then it won't have cost you too much in the long run, except of course all those extra days and hours of PAIN.

I hope they figure out what's wrong and get you on the mend quickly~

thanks

i'm so sorry, i hope this gets straightened out for you soon

Do hang in there. It is truly difficult when dealing with different doctors who don't appear to hear you. And I agree that it sounds like they just need to get in there to see what's happening. But now they must satisfy the concern of the hematologist(?). This too will hopefully pass. I will keep you in my prayers. I also just had a LAVH with RSO. I am thankfully doing much better. My uterus ended up being twice as big as the ultrasound or examination showed due to a fibroid in the lining. None of this they would have found if they hadn't gone in. Hang in there.

Hope, I can't believe all that you've had to go through -- except sort of because I'm not healing and no one knows why and it's monumentally frustrating. I know what it is to have to lie down so much and wouldn't wish it on anyone. I have to say this hematologist sounds really unpleasant. and unhelpful; sometimes health care policies are a giant pain in the butt. I'm sending you wishes and prayers for getting your surgery scheduled and done and getting all this stuff cleared up. Sure hope you'll be able to hang in till then! Big (((hugs)))

Kyredhed: I'm not an expert here, but I think your problem is serious and I would suggest you start a new thread so that the sisters can read and respond to your problem. Meanwhile I wish you comfort and healing.

Thank you ladies for your support. I guess I'm out of shock and heading towards accepting the situation. Not that I have any choice at the moment.
I called the lab that the I'm being sent to for the blood work. Thankfully they do take my insurance. The lady on the phone said they would be drawing 10 vials and I should be there about 15 minutes. I'm happy I will not be there for hours but that also means they will not be doing bleeding times. Unless things have changed over the years that means I'll be going back at some point for additional tests.
I was hoping to get a call today with a new date. I knew I wouldn't but as they say a girl can wish, can't she?