CW: gynecology including mention of specific areas of anatomy, cancer, surgery description
Recently, I had a series of appointments and tests, which led to some biopsies, which led to a minor surgical procedure (while I do not have cancer, I do have precancerous cells that are in a stage that is classified as a "when not if" scenario- there is no question that they will become cancer if nothing is done about them, so they need to be removed ASAP). That procedure was not great. I'm currently healing, but it's going to take awhile. I've had to turn this into two posts because it was just getting to be too long. So I'll get into my personal experience in the other post, which you can find here. But before we jump into that I'd like to provide some background info on what a LEEP actually is, why it might be necessary, and some unique challenges that people with EDS or other connective tissue disorders face when going through this process.
Let's start with why someone might need a LEEP. A LEEP is performed on someone who has late stage precancerous cells on their cervix. There are a number of ways that precancerous, or CIN (cervical intraepithelial neoplasia) cells are defined:
CIN1- mild changes, low likelihood of becoming cancer
CIN2- moderate changes, low likelihood of becoming cancer
CIN3- severe changes, will become cancer (this stage used to be called "carcinoma in situ" to denote that the cells are going to become full-blown cancer, but haven't spread anywhere yet)
It is usually only recommended after an abnormal pap (sometimes multiple abnormal paps, depending on so many factors) and a colposcopy with biopsy. During a colposcopy, a gynecologist examines the cervix using a special camera called a colposcope. They put something on the cervix, most often a form of acid, that highlights any abnormal cells but turning them white. If nothing looks bad, you're done until your next pap. But if the gyno sees something, they'll take a biopsy (or 5, in my case) to send to a lab to test the cells for the above changes. If your results come back with CIN1 or often CIN2, you're done until your next pap. This is because most people have immune systems that will target those cells and heal your body. Sometimes, if you're like me and your immune system doesn't like to play nice, for example (although there are many, many factors that could affect this outcome), your results will show CIN3 or cancer. If you have CIN3, you're offered a few alternatives:
hysterectomy- there are many types of hysterectomy, but the type that would be suggested here is probably a radical hysterectomy, which removes the entire cervix as well as the uterus, part of the vagina, and some of the ligaments and tissues around them. This is done under general anesthesia in a hospital setting, comes with a lot of risks, and requires considerable post-op care.
cone biopsy- a cone shaped piece of tissue from the cervix is removed. This is also done under general anesthesia in a hospital setting. It carries the same risks of any surgery done under general anesthesia, and has a long recovery time.
LEEP- the option the carries the least amount of short term and long term risk. It is done in a doctor's office with local anesthetic.
LEEP stands for Loop Electrosurgical Excision Procedure. It's sort of...exactly what it sounds like? It's a procedure to excise abnormal tissue. There's a tool with a little metal loop on one end, which is used instead of any sort of blade. And it's electrified. Basically, the patient has a grounding pad on them so that they don't, you know, get electrocuted, the electricity flows into the tool, and then the metal loop is used to slice through the cervix and shave off anything that needs to be removed. It's used to treat precancerous cells, but it is also a diagnostic tool. After tissue samples are gathered, they are sent to a lab. The results will tell you whether the doctor successfully got all of the cells, and whether or not the cells have spread to deeper levels of tissue than could initially be seen.
It's typically done with local anesthetic in a clinician's office, rather than going to a hospital or going under general anesthetic. The general idea is that it's a conservative option that is supposed to leave as much of your organs intact as possible. The electrified loop partially cauterizes the wound as it goes, cutting down on bleeding. There's a separate tool that can be used at the end that has a little metal ball on one side, which finishes any cauterization that the loop didn't quite handle. A protective coating is then placed over everything to help with the beginning stages of the healing process. That coating comes off within a couple of days, and then as far as the internet says, you could start bleeding "immediately or in two to three weeks." Helpful. You know that you can expect some level of bleeding, for some amount of time, with varying amounts and types of discharge involved. Some places say to expect light spotting for a few weeks, but if you have any bright red bleeding to contact your doctor immediately or go to the ED. Some places say to expect bright red blood. Some places say that if you're bleeding with clots, that it is an emergency. Some places say that's probably fine for a day or two. Some places say if you soak through a pad an hour for more than two hours, get yourself to the ED immediately, call your doctor on the way. Some places say you should only do that if you bleed through a pad an hour for two days (DO NOT GO BY THIS STANDARD, THAT IS SO DANGEROUS, WHAT THE FUCK). Most places say to get help if you have a fever of 100.4F...but for how long? Most places say to get help if you have severe pain. No one defines severe. for those of us who live with chronic pain (or for people who are used to having overwhelmingly painful periods), defining severity in this context is extremely important.
When looking into all of this after I made my LEEP appointment, I obviously found widely varied information. Know what I didn't find? Anything about any connective tissue disorders and cervical cancer treatment at any stage. So I widened my research. Know what else I didn't find? Anything about any connective tissue disorders and ANY GYNECOLOGICAL INFORMATION that didn't relate to pregnancy, birth, menstruation (the vast majority of the time lost somewhere in the middle of overviews of EDS generally), and within the last couple of years there was some research into painful sex. Most of the later information came from crowd sourced surveys and social media.
Y'all.
It was bad. I found literally nothing. I asked three different professionals, and only one of them was able to give me something that a) I hadn't seen yet, and b) was helpful in terms of surgeries in general. So I was left to cobble together what information I could find from a variety of sources in random areas of medicine. I'll get back to that in a second.
The Ehlers-Danlos syndromes introduce several complicating factors into any surgical procedure, even minor ones. Here are links to the one helpful paper and to a podcast episode featuring one of the authors to give a more in-depth look. We have so many things to consider, and we just have to hope that everyone we're working with will either already know how to treat us or will listen to us when we tell them what we need (or go out and learn on their own, but that's super rare). As you probably already know if you're reading this, EDS symptoms are widely varied. So much depends on subtype, and from there symptoms can change person-to-person, in one person over a long period of time, or in one person on a day-to-day or even hourly basis. There can also be crossover symptoms between subtypes; if someone has hEDS, they could also have symptoms that are more commonly seen in vEDS, to use a personal example. It can be extremely difficult to predict symptoms. That said, there are some common comorbidities that have been identified, and that are especially common in hEDS (hypermobile Ehlers-Danlos syndrome, the type I have) and HSD (hypermobility spectrum disorder, a condition that is considered nearly if not entirely identical to hEDS); namely dysautonomia and MCAS (mast cell activation syndrome, which causes the body to have or develop allergic reactions to just about anything). Since EDS presents so differently, it won't be possible for me to cover every single surgical consideration here. It's just too individualized. Which is honestly one of the main reasons it's important to have a surgical team that truly understands how EDS works, so that you can get the individualized care that is necessary in such a dangerous setting. I really do recommend at least listening to that podcast episode, even if the paper isn't something you want to get into. It's not super technical, it's very engaging and entertaining, and there's so much great information packed into one place.
Some general complications that EDS patients need to consider:
Resistance or hypersensitivity to anesthetics. It is very, very common for people with EDS to be resistant to anesthetic. This can manifest in a number of ways. To name a few:
Needing far more anesthetic than the standard dose
Delayed onset of effects
Wearing off too quickly- sometimes local anesthetic will only work for a fraction of the expected time, sometimes people will wake up before a surgery is complete, ect.
Local anesthetic may not distribute to as wide an area as it's supposed to
Allergic reactions to anesthetic
Needing far less anesthetic than the standard dose
Unexpected or rare side effects
Joints dislocating or injuries (to joints or other parts of the body) caused by improper handling while under general anesthetic
Medications or supplements could interfere with things that are given during a surgery
Fragile skin and soft tissue that could tear
Any adhesive used could cause a reaction or could tear the skin when removed
Excessive bleeding during or after a procedure
Dysautonomia causing rapid, excessive, repeated, or and/or unexpected changes in heart rate and blood pressure
Dysautonomia causing loss of consciousness
Sutures not staying in place
Wounds that take much longer to heal, or that heal in correctly
Opioids as standard post-op pain relief may have no analgesic effect at all
Increased likelihood of infection due to immune dysfunction
Other symptoms may flair during recovery due to prolonged lack of activity or access to treatment
Deciding to have a surgical procedure, even a minor one, is a big deal. I mean, it's a big deal for anyone. But it's a very big deal for people with EDS. Especially given the lack of knowledge about the syndromes and the medical field's habit of not believing EDS patients about their known medical needs.