URGENT -- uncontrolled pain during biopsies. What's your plan?

Why are you using doctors who don't take pain concerns seriously? My first step would be to find new doctors. It is their job to help manage pain and validate your concerns regarding this. I hope you don't have to experience this again.

Caryn

Bobo - my first E B was soooo painful. It was with the OBGYN I had since my kids were born. I switched docs this year to consolidate my care w/in one network. I was not looking forward to any future EB's. Three weeks ago I had my annual appt and she decided to do an EB on the spot. This time SHE talked me through it and it wasn't nearly as bad. I agree - get a new doc.

I had 2 stereotactic biopsies on the same breast in one day. It was miserable and I don't know for the life of me why I was not offered valium. When I had to come back for an MRI biopsy (something I would simply NEVER do again) I  insisted on valium. I was given 10 mg. That was about 20 mg short of what was needed for that hateful procedure, and they acted like I was a big baby for even asking. My husband had a 10 punch prostate biopsy with nothing whatsoever. It's something you don't know about until you go through it.

I think it's complete and utter BS to make people suffer through that kind of pain unneccessarily -they have the solution in their tool box. I personally will not let them jab any sharp instrument into my breast again without valium. I have always considered myself to have a relatively high pain tolerance, but those biopsies were awful. Simply laying on a hard table that is cutting into you with your neck at a 90 degree angle for over an hour without being able to move at all is enough to get you something to chill on all by itself. You get better treatment getting a cavity filled at the dentist for crying out loud - at least they have laughing gas if you want it!

Bobogirl, when you are looking for a new doc, make sure you are very clear about what happened and that if you need the same procedure in the future then pain control must be discussed.

I have always wondered why a D&C is done under general anesthesia but an endometrial biopsy is done with almost no pain control.

Leah

I'm so sorry to hear about your pain, all of you!!

I got the phone call today about uterus trouble due to tamoxifen, referring me to a GYN. Crying ever since. I just don't want to go! It hurts too much!!!

How does one find a gyn who will help manage pain during and after procedures? I feel like I need a bodyguard.

I just don't understand all of these procedures with little to no pain control....or even anxiety control. My stereotactic biopsy was less invasive than surgical...but they're still punching holes in you...& we're awake for it & can hear what's going on. I was SO tense on the table that when they said I could get up....I couldn't! I was stiff as a board & hurt all over. When I knew I was going to have wires put in for the wire loc the day of my lumpectomy, I called the radiology place to see if I could take something. They said absolutely not b/c I was going in for surgery. I called my surgeon & she said it's NOT A PROBLEM to take Valium that day....just to let the anesthesiologist know when & how much. Why the huge difference in opinion? Probably b/c the person I spoke to had never had it done to them. Like bobo said above, I think all the nurses & radiologists need to experience the procedures they are doing at least once. They might actually create a stereo table with a place for your head. At least the breast MRI had a face rest. I'm SO thankful I took Valium that day. Instead of laying me on the table like I had geared myself up mentally for, I had to sit in a chair! Seriously? I told them that they should be VERY thankful I took Valium before I came in. I should've taken more....but I needed to be able to walk to my car & get to the outpatient surgery after that.

I also had a friend who went thru the same type of biopsy (another state) who was not given any lidocaine & was just held down to the table by 2-3 nurses. She's still traumatized by it years later. How barbaric! Where do these people come from? What year are we in?

When you are new to all this & your head is still spinning from bad news....how can you even process to questions to ask before hand? When you get a diagnosis, your head is spinning & you just nod your head & accept whatever they throw at you. This is where support groups & boards like this come in really handy.

To the original poster....I would definitely ask around & interview more Drs. Everyone's pain tolerance is different. If you know it's excruciating, then you should be able to request being knocked out...or at least partially knocked out so you don't remember anything. They give you loopy meds for a colonoscopy. Why would an endo biopsy be any less?

I'm with Melissa on this.  I would add that when I felt a bit more than I wanted, I just asked the doc for more lidocaine.  At one point, we both laughed at the amount he used.  It was not a problem at all.  I would not hesitate to (hoping, of course that I'll never need it) have all the same stuff (core needle, stereotactic, and wire guides) again.  I'd also suggest, those of you who had a hard time with any of these procedures, to have a nice, clear discussion with any docs before any future procedures, letting them know that you have had some painful procedures in the past and want to be certain that he is aware that you may need more painkiller than average.  That should do the trick.  Knowing that your pain will be managed should take care of most of the anxiety.

I totally agree that things posted here can scare people, and I agree that most women (thank goodness!) don't have a tough time with biopsies. Approaching a biopsy is stressful enough, and none of us want to add to that...I sure don't.

But it's a hard call for me, because my first vacuum-assisted stereotactic core needle biopsy in Sept was, frankly, brutal. That's not my word, it was the word my surgeon used to describe it to my husband and me, in recovery. I was one of a tiny minority with extreme pain, when he collected the samples. After lots of reading, I think my rare experience happened when the Lidocane was unable to fully penetrate into my extremely dense breast tissue, at the very deep location of my microcalc cluster, along the chest wall.

I'm a total nerd about researching everything, and I fully expected to be able to handle any discomfort. I think I was pretty relaxed, for a first-timer. I think my surgeon was as surprised as I was about my pain. I'm usually a tough cookie, but after four samples, and (sorry to say) a lot of yelling from me, he offered to stop the biopsy. I opted to continue, and he doubled his usual Lidocaine dose. Two more samples, so enough to diagnose my ALH. I was so mortified about my yelling that I apologized to everyone in the room. The pain stopped as soon as the tissue collection stopped.

Physical recovery was easy, and because I am a tough cookie, I thought I could just put the experience behind me. But for days I had very violent nightmares, even when I tried to nap. I was really rattled by how the experience affected me, many weeks later. This taught me that this kind of pain experience can have real consequences for the very small number of us it happens to.

Yesterday, I had my first excisional biopsy, and I was downright scared about the wire location process, because of the above experience. I let my surgeon know, and he offered an Atavan IV before the wire loc. We made sure the anesthesiologist took the Atavan IV into account. The wire loc process wasn't bad at all for me, and I think next time I can probably do it without anything. I just had to get over the fear hurdle caused by the stereotactic biopsy. Whew!

So now I wonder...is it insensitive to discuss a tough procedure, here? I'm hoping not, if I'm careful to stress how rare it is. I don't want to scare anyone, but if there's another person here who has had a similar experience, I think my post might help. They will know they are a rare bird indeed, but that they are not alone.

The thing is, when something like this happens, doctors naturally hope you're wrong, you're exaggerating, you're over reacting. I heard my surgeon say to the others in the room, "first time in twenty years..." He also said to me, "sometimes, unfortunately, this can be caused by patient anxiety." This was not a very helpful thing to say to me, at the time, as I was hurling swear words at the ceiling, and trying to hang on. But I actually get it. I think he's a kind man, and did not want to hurt me. I get it, but this was real. After lots of searching, I found a small number of posts on the web that paralleled my experience (also extremely dense breasts and very deep lesions.) It made me feel a little better to find others that could validate my experience.

As Brookside suggested, I plan to always speak honestly with my docs about my fears about pain. My experience base is now a little different from many patients, and I think they should know. I have decided (tough cookie or not!) it's OK to be honest about my fears...even if busy medical professionals don't normally welcome the added complications of anxiety meds or extra pain meds.

One good thing about going through a tough procedure is we learn how to handle the next one better. I do agree that some of us react differently, and some of us have to find our own road to get through this without losing all our marbles.

Fingers crossed everyone reading here has normal, routine, boring, smooth-as-silk procedures. I firmly believe that is the norm!

Hi Melissa, oh no, I didn't think you were discounting anyone's experience, not in the least. Your comments are right on target, and I was actually trying to agree...it's the exception (thank goodness.) Not fun but doable.

I hesitated to post here because I really don't want to frighten anyone, but I spent so many hours trying to find some kind of validation for my own weirdo experience, I thought I could write it carefully enough to give another "lucky" (unlucky?) person some support, while still saying it's not the norm. Kind of a fine line to walk, in a post.

I think you're completely right about high anxiety heightening pain. In my case, I was pretty relaxed and joking (told the poor mammographer under the table I needed to send her a fruit basket, as a thank you for all her hard work getting me positioned.) I did not feel the incision, so the Lidocaine worked for some areas. All was great until the surgeon started harvesting samples, then it was a whole different ball game. I just had no numbing in that spot. I could feel it and describe it to him clearly.

That's upsetting that you respond that way to the conscious sedation cocktails. I've had many colonoscopies (Crohn's) and I never remember anything. Sorry you had the pain during yours. I sure do support your thinking about not letting them blow you off, next time. Do make them listen and adjust for you!

I hope you get good results from your recent biopsy, I recalled you were having one about the same time as mine. Fingers crossed for a good report for you.

Thanks Melissa, I hope to know Tues or Wed also. Here's to turkey, cornbread dressing, cranberries and benign results. And pumpkin pie too.

My first needle biopsy was excrutiating! It literally took my breath away. I couldn't speak or breathe. They kept telling me not to hold my breath but when I didn't I'd scream. I felt all of it. I never ever want to go through that again and wouldn't wish it on anyone. That was performed at a local hospital

My second biopsy was no big deal. I was so scared. I chattered all the way through it. ( I ramble when I'm nervous.) When it was done I said " Is that it?" The doc said " Yeah, but we've got some sharp instruments over here if you'd like us to poke you some more." " Nah, I'm good."

I think the difference is that the second one was done at A CANCER CENTER BY THE HEAD OF THE DEPT. I'm assuming I was blessed enough to get him because I had mentioned how torturous the first one was.

My best wishes and positive vibes to all of you.

I think that's a really good point. As a bit of a tangent, my family has lots of heart disease, and we always remember that pain can be an alert that something is very wrong. I'm so glad you were aware enough to take action when you needed to, and that you caught it before needing surgery.

Also, I thank you for making me look up a new word, "dystopian."