We Need To Talk About Your Vagina, Cysts, Fistulas & Abscesses

Types of cysts & abscesses that are not common and need to be talked about. Period.

I felt so alone with my first Bartholin cyst. I knew it was dangerous to get it lanced and I’ve heard horror stories and many doctors prefer to ride them out and see where the cyst takes the patient. Luckily, mine expelled contents on its own with home baths and keeping it absolutely clean and dry.

Talking about complications that arise with Crohn's

Unfortunately, it has tended to pop up again in the same place/around the same area. Has it gotten easier? A little bit. But the mental anguish and physical pain that patients endure alone from these types of complications need to end. We need to talk about it.

It's important we get accurate and patient perspectives out there. Doctors are reading our educational pieces and opinion pieces - let’s be heard that it’s often too stigmatized to even bring up rectal and vaginal abscesses. Perianal cysts and abscesses. Sores on your bottom that turn into skin conditions that are hard to treat. Let's keep in mind that if that area isn’t free of bacteria and cleaned properly according to doctor’s advice, it could become severely infected and can actually lead to sepsis.

When you’re diagnosed, people don’t talk about the scary parts of Crohn’s disease or ulcerative colitis. They talk stomach issues, medications, but never really abut super private stuff. Why? Because it’s super private and culturally, there are a lot of people that struggle with this type of thing.

Caring for abscesses, sores, fistulas, and cysts

Many people feel as if they have to handle these things on their own or their cultures frown upon talking about certain subjects, especially sensitive topics like perianal fistulas or abscesses or cysts. Some of these things (most of them) need colorectal surgeons to help assist with the care needed to make sure things don’t get infected, things don’t drastically get worse and to provide you medications like antibiotics.

Some gastroenterologists will provide antibiotics until you’re able to get in to see a surgeon. And no, just because the colorectal doctor has the name “surgeon” attached to it does NOT mean things will always involve surgery. Often times, it involves observation for periods of time.

Too many people struggle and suffer in silence and it’s up to us to try and turn that stigma into something productive and educational. Too many people suffer and go months to years not knowing what’s affecting them because they are scared to go in, don’t want to go in, some can’t afford the care, etc.

A visit to a colorectal surgeon for these issues

Embarrassed to bring it up at your GI? Just mention that you’d like to see a colorectal surgeon, as many gastroenterologists are not IBD specialists and don’t know how to handle some of the harder cases.

Colorectal surgeons put in setons, lance abscesses, cysts &; keep a very watchful eye on fistulas. The things that are extremely hard to talk about.

Coping with extra-intestinal manifestations of Crohn's or UC

We need to talk and write about these things for the people that don’t have enough support to seek help, that aren’t educated enough on what they have and how relatable and common it all actually is.

It’s up to us, the seasoned and well-informed patients who have gone through this repeatedly and want others to know what their journey looks like. IBD is different in everyone, so are cysts, abscesses, and fistulas.

Extra-intestinal manifestations are some of the worst symptoms. Can you imagine finding a Bartholin cyst or a fistula due to IBD and being diagnosed through that? A lot of things would need explaining if you were in that situation and I know that I would want resources and people and talk to and be provided stories.

What is the biggest stigma you deal with living with fistulizing Crohn’s and the harder parts like vaginal and reproductive parts, IBD-wise?