Hidradenitis Suppurativa – You Are Your Best Advocate (Part 2)

In case you missed it, check out Part 1 of this series!

You made it to the appointment! Maybe it’s your first time with this doctor, or maybe it’s your twenty-first, but be prepared to be shocked: you can walk out of this appointment if you are not convinced your needs are being met. Is the doctor only providing you with one or two options for treating your HS maybe because of lack of education, or do they tell you they will only use a few methods simply because that is what they have used for years? Maybe the doctor is throwing out a major attitude. I mean, really, who wants to deal with HS? You can tell that doctor that the treatment they are offering does not meet your needs. That’s okay. This is your body. Actually, this is your body on HS.

A couple of disappointing appointments

I had a couple of really disappointing appointments that I would like to use as examples. The first was when I was attempting to get diagnosed. A nurse practitioner accused me of self-harm when I tried to get some active HS spots examined. Let me assure you, I was never participating in self-harm. I was trying to keep the bits and bobs that I was born with healthy. They had already experienced enough trauma to last me a lifetime. I had three spots that would pop up every couple of months for nine years, they were incredibly painful, and they were in a place I could barely reach.

Years later, a plastic surgeon was talking about Bartholin’s glands and indicating the outside of my body, pointing to my abdomen and my pelvis instead of my inner canal, which is absolutely anatomically incorrect. Ladies, Bartholin's glands do not sit on the outside of our bodies. I also told the plastic surgeon that I was not able to use lidocaine to get numb, because of one of my rare diseases. He said not to worry, they would just give me more and more of it. I hope that if anyone else is in this situation, no one allows a doctor to proceed just because they are a doctor. 

Doctors learn from us, too!

When you have decided to not seek care from certain providers, don’t just fade away and let others take your place. Let the providers know why. Trust me when I say that doctors learn from us too. If you are able to, keep a level head when you give this feedback. Regarding the nurse practitioner, I had a discussion with my regular OB/Gyn, who is part owner of her practice. The doctor was the appropriate person to have this conversation with. She followed up with the nurse practitioner. I don’t even have to see the NP anymore in the future if I don’t want to.

Regarding the plastic surgeon, I told the front office to not put me on the schedule. They acted shocked and asked me why I was refusing the procedure. I told them I wasn’t comfortable for anyone on that team operating on me in that specific area of my body who didn’t know female anatomy, and he also wanted to only give me lidocaine, which I didn’t react to properly. Did I want someone chopping on me and I would feel every slice? No. Nope. Definitely not.

Be an advocate for yourself and for others!

If you write an online review of a doctor, there are certain things to keep in mind. Be very clear about your message. No one is going to feel your information has any merit if your message isn’t clear, and that includes spelling and punctuation. Don’t write in all caps, and don’t use a bunch of exclamation points or question marks. Don't falsify any information. In this way, you are acting as an advocate in your community.

Check out Part 3 of this series!