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  • Writer's pictureKathleen Burnard

LEEP pt. 2- The Day of the Procedure

CW: medical trauma, surgery details, injections, pain. While this is a gynecological procedure, I will NOT be mentioning any specific body parts.


Welcome to the second part of my two-part LEEP discussion. If you're looking for background information, what exactly a LEEP is, who might need one, and some added complications and considerations for EDS patients, you want part 1, which you can find here. As stated in that post, I highly recommend checking out this paper on EDS surgical care and this super engaging and entertaining podcast episode with one of the authors of the paper.


 

And so we come to my personal experience. I am currently alright. Mostly. There were no emergencies during the procedure, but that, as my father so aptly put it, is damning with faint praise. It would have been much worse if my partner hadn't been there to advocate for me. This was only a week ago as I'm writing now, so I'm still processing and it still feels very new. Right now I'm just taking it excruciatingly easy, trying to focus on healing physically and emotionally. Listen, my immune system is UPSET. Everything in my body is working so hard to keep me safe and healthy, I'm exhausted. Please bear with me if this is a little bit disjointed or difficult to follow.


I'm only of those lucky people I mentioned in the last post with a severe resistance to local anesthetic. You can find a little bit more information about my history with that in other blog posts. Novocaine and lidocaine just don't work the way they're supposed to; I end up needing 2-3x any standard dose, and it tends to wear off pretty quickly. It's contributed massively to the way that my brain and body perceive pain. This is a consistent problem that's been around since early childhood. Like some other people with EDS, I had extensive dental and orthodontic work as a child. I was not believed when I said that I could still feel what was happening. I only learned about anesthetic resistance in my 20s when a wonderful dentist felt me flinch the tiniest bit and stopped immediately to talk about it. For those of you who haven't done the math yet, That means I spent 15-20 years of my life having work done without the full benefit of anesthetic (unless it was inhaled). I always assumed it was just supposed to be painful, or that I was overly sensitive. I still have trouble trying to sort out how much pain I'm feeling vs how much I'm supposed to be feeling. It's outlined in detail within my greater medical history, which I give to every new doctor. I have also had multiple conversations with this particular doctor about it.


Leading up to the appointment, but still well in advance, I sent her a message through her patient portal with a reminder about that resistance, as well as a heads up that opioids don't have an effect on me (in our last appointment, she'd mentioned prescribing something for post-op pain). I also included the paper that I linked above, so there would be some actual medical science backing up what I was saying, and so that she'd have some actionable information. You know, instead of me just saying, "hey this is a thing that happens, believe me and do something about it," because that never, ever works. I even told her that most of the information that would be relevant to our procedure was on page 19, so that she didn't have to read the whole thing. The response I got, in its entirety, was as follows:

Thank you for the article. Pain following LEEP is usually well covered with tylenol and ibuprofen. With the local- have you had any issues with dental work? Have you ever had too much?

This, as you can imagine, was not a comforting response. For, like, so many reasons.

  1. She absolutely said that she was going to prescribe something for pain, which is the only reason I mentioned pain meds. She should also know that I can't take ibuprofen because it makes my bruising and bleeding much worse. We've talked about it and it's in my file.

  2. As I said, we'd already talked about anesthetic. And it's in my medical file. And asking those questions after I'd clearly stated I'm resistant to local anesthetic and routinely need 2-3x a standard dose? That told me that she didn't believe me and wanted proof.

  3. This questions also told me that she wasn't as knowledgeable about EDS as she'd led me to believe, because if she did, she'd know how common it is. And that provided further proof that she had not looked at the paper, because it is clearly stated there as well.

I was not filled with an abundance of confidence. But I talked to my neuro and physical therapists about it, put together a friendly, concise, response, and...heard nothing back. At that point I still had no information from the office about any preparations I needed to make before the appointment (apart from taking tranexamic acid to help with bleeding, something we'd already established for my previous procedure; I had to ask if I should take it this time, I wasn't given that guidance unprompted, and no one double checked the day of the procedure to make sure I'd taken it) or any information from them about recovery. I was still on my own.


Fast forward to the day of the procedure. When we got there to check in, the woman at the desk handed me two pieces of paper:

  • A "consent for surgery, special diagnostic, or therapeutic procedures" form full of small print, asking me to authorize any potential blood transfusions, talking about inserting medical devices or implants, and attesting to the fact that "no warranty or guarantee is made as to the result or cure." The thing that really stood out, though was a statement that I'd "had a discussion" and "been informed" about literally every possible thing that could be associated with a surgical procedure. The last item I was supposed to be signing for was that:

    • I have read and understood all of the information in this form (not really???)

    • The operation has been adequately explained to me by my physician (definitely not)

    • I have had the opportunity to ask questions (I mean...sort of)

    • I have received all the information I desire concerning the operation or procedure (so incorrect it's laughable)

    • I authorize and consent to the performance or procedure listed above (I was very much on the fence at this point)

  • "INSTRUCTIONS FOR AFTER LEEP PROCEDURE"- a piece of paper containing a total of six generalized bullet points no different than anything I'd seen online.

Again, these were given to me at the check-in desk, before I saw the doctor. I signed the form knowing I could always walk out if I needed to.


The doctor was 45 minutes late to the appointment. She specifically scheduled an 8:40 am appointment and blocked off the following time slot to make sure we weren't rushed and to leave time for anything unexpected. We got into the room on time, got my blood pressure taken, and I was told to get undressed from the waist down with a sheet and the doctor would be there in a few minutes. But she didn't walk in until 5 minutes before that following time slot. For the millionth time, I'm so glad Kyle was there, or I'd've been sitting there alone for 45 minutes, feeling exposed, just staring at all of the equipment, which was already out. When she did come in, she said it was because she decided to see a bunch of other people before me to get them out of the way. She let me ask some questions, and for the most part I thought the answers were...fine. At one point I tried to ask about recovery, given that I can expect a longer recovery time and more bleeding than the average patient, but she cut me off and said, "there shouldn't be too much bleeding, I'm not worried about that." I wasn't sure how to respond to that. Kyle, the one with sense in the room, was like, "so...did that answer your question?" No! No, it did not! That allowed me to reframe what I was trying to ask, just to get any sort of helpful response, which was, "at what point should I seek medical attention?" She just told me the same stuff I'd read online. Alright, sure. She did say she thought I'd have more pain than other people, but didn't offer to do anything about it. I asked if there was anything I shouldn't take, mostly because I knew that asking what I should take wasn't going to get me anywhere and I have my own pain meds anyway, and the answer was, while amusing, not entirely helpful: no hard drugs or alcohol, haha!


She brought up the anesthetic unprompted- a good sign. She usually gives patients 10mg total, but she was going to start me with 15mg. That's still not as much as I told her I'd need, but it was a larger dose than normal and I figured I'd be able to ask for more if I needed it. She then said most people are surprised by how painless it is, most people only feel a tiny bit of cramping, most people find the colposcopy process far worse (a procedure that is done entirely without anesthetic, so...yeah, of course that would be worse if you don't actually feel this one).


Without anyone informing me ahead of time, the nurse put grounding pads on my thigh. That would have been fine, except that they are embedded in adhesive. No one asked me, an EDS patient with MCAS, if adhesive the length and/or width of my thigh was going to be alright. Grounding is obviously extremely important. For a second I thought maybe that's just the equipment that exists, that's just the way it is. But even if that was the case, someone should have talked to me about it first. Having done some fairly in-depth research since then, I've found that multiple alternatives exist that do not include any adhesives, or any contact with skin at all. Look, here's one now (it's also safer and more environmentally responsible, but that's a different conversation)! Before I could say anything about it, the doctor was injecting the lidocaine. Remember how she said we were going to start with 15mg and go from there? NOPE. After the procedure started, she said never mind, we're going to go stick with 10mg and "see how it goes."


Let me say that for you again.


After the procedure had already started, the doctor went back on our agreed upon amount of anesthetic.


She did not make it clear that the lower dose was a new starting point, either. It was framed very much like that was that. She even went on at some length about lidocaine toxicity, and every time she asked how I was doing (not many times) it was unclear if she was asking about pain or lidocaine side effects. As the appointment went on, it was like pulling teeth to get more. I had to ask multiple times. There were moments that I couldn't actually ask for what I needed, because I couldn't form a sentence, because I could feel every single thing that was happening. Kyle had to step in and help. I had to get more injections multiple times. Each time she asked where it hurt, specifically, like I could pinpoint a spot in an area of only a few centimeters that was being scraped with burning metal. She'd only give me a couple of mgs more at a time. I wasn't numb until the last 30-60 seconds of a 20 minute procedure. And even then, I could still feel that things were happening, it just didn't hurt anymore. I didn't know how tightly I'd been holding the rest of my body until those last few seconds when I felt everything relax. I'm afraid I may have hurt Kyle's hand from squeezing it too hard. I definitely bruised my own from holding my fist shut so tightly for so long. At one point Kyle asked her why she decided to go with 10mg instead of starting with 15mg, and her answer (which she gave only to him, like I wasn't in the room at all) fully solidified the fact that not only had she not read anything I'd sent her, she'd also led me to believe she knew far, far more about EDS than she actually did. She said, "because the first injection went in so easily, and the tissue ballooned." We asked her to elaborate. "The fluid made the tissue stretch out, and putting in any more would have made it stretch too much and hurt her." I was shocked. The tissue stretched out? Really? THAT'S KIND OF THE WHOLE DEAL WITH EDS. Are you fucking serious right now??? And let's not pretend she cared that much about hurting me. She demonstrated the opposite of that clearly enough.


We realized they'd left the syringes out after they left, so out of curiosity we took a look to see how much was actually used. Just under 20mg. And I could've used more (she didn't bring any more than that into the room). So, you know, the minimum amount I told her well in advance that I'd need.


Wanna know what else they left behind in the room? The tissue samples she took. I've been through enough medical stuff that it wasn't too bad for me (Kyle was also okay), but it was definitely jarring. If I'd just gone through that whole ordeal without having the life experience I that have, and got up only to see pieces of me cut out in jars, just casually next to some tools on a surgical cart? Jesus. I mean, honestly, what the actual fuck.


On the way out, she had the audacity to tell me that if we didn't get everything this time around, we'd just do another one. No. She will not be touching me ever again. She literally tortured me for 20 minutes, and I have to pay her for it. I have a follow-up scheduled, but if I get results sooner than that, I'm going to cancel and take them somewhere else. I don't want to go back there at all if I can help it.

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