How Being Desperate for Relief From Hidradenitis Suppurativa Ruined My Womanhood (Part 2)

When I put on my first pair of underwear after my surgery, I knew my life would never be the same. Uncomfortable isn't even the word to describe how I felt and still feel about the surgery procedure to remove hidradenitis suppurativa from my groin area. Disappointed and heartbroken are more fitting adjectives. As I emotionally tried to process what had happened to me, I also had to make adjustments to the clothes I wore because I no longer had a full bikini line.

Shoulda, coulda, woulda

I notified the doctor at my last visit of my worries and complications. While he acknowledged how I was feeling, the way he addressed my concerns was a bit dismissive and maddening. He told me he understands how I feel, which he doesn't, but it's something they can fix in a year. My question was why couldn't they have done all they could while I was on the operating table to maintain the shape and placement of my labia major? His answer was it would've been too much surgery. So, my thought is why not leave it alone and just tell me you couldn't perform the surgery how you wanted the first time around so a second surgery is needed?

It honestly would've saved me a lot of the headache I've experienced. These are all shoulda, coulda, woulda's. The fact is that now, I am experiencing exactly what I dreaded initially which is the separation of the surgical wound because all of the HS was not taken out properly. This means I am now looking into plastic surgery options to reconstruct my vagina. One of the hardest things to do is to have hope without medical insurance. I am doing my best now to get state medical insurance because I am currently a freelance and contract worker. I love the life of being able to work when and how I want but the inconsistency of benefits and security is not okay.

Fighting the feeling of unworthiness

Despite all of this, I am learning to love myself through this tumultuous period in my life. It's the most difficult thing I've probably faced since the onset of this disease. It's not easy and every day I have a breakdown while changing my bandages or looking in the mirror. It's hard to fight the feeling of unworthiness or like I expressed to my father, that I am damaged goods. Recently, I had to have a serious conversation with myself about the narrative I hold regarding beauty. My desperation to be in closer proximity to this ideal standard of beauty our society has set is what motivated me to push forward with a surgery that had so many red flags.

Not only that, but my desire to be intimate and close with a partner without pain shooting through my body or puss leaking was on the top of my list. In the midst of my desperation, I did more damage. In the grand scheme of things, this serves as a lesson to us all on this journey with this condition to think twice before we jump into something because we are on edge. It's always important to take a breath and let the emotions dissipate so the logical mind can kick in. It's hard to do that as an HS patient because we are constantly emotional and battling so many shadows and tangible and intangible demons. However, taking the extra time to think through our decisions will enable us to receive the care that will benefit us in the long run rather than the short term.

I did what I thought was best at the time

This isn't to say any decision we've made thus far is our fault because once again, we did what we felt we needed to at the time, but it's just a reminder to us all to slow down a bit. Not all developments and treatment options are effective or right for our specific genetic makeup or bodies. Keep all of this in mind when seeking treatment for anything especially with hs. I wish I had this mindset back then but I was young in my journey and was very desperate for relief. I end this journey with a call for us all to forgive ourselves for what we may or may not have done.

Read this next sentence aloud, "I [insert your name here] forgive myself for [insert scenario]. I did what I thought was best at the time. From this day on, I move with confidence and surety rather than desperation and sadness. I advocate for myself and educate myself on the steps needed to heal mentally, physically, and emotionally." Now, give yourself a big hug! Our story isn't over, this is just a minor setback in the larger picture. A moment to be capitalized on in the sense of providing communal space for others to share similar experiences. Utilize this time to fully heal so when your season comes to receive the treatment you need, you're fully prepared inside and out.

Read Part 1 of Jasmine's story How Being Desperate for Relief From Hidradenitis Suppurativa Ruined My Womanhood.