Sydney's Upcoming Surgery and Recovery

Trigger warning: physical illness, infertility

The Long Story Short:

I have stage 4 endometriosis, and I am scheduled to have my 3rd and hopefully final surgery for a hysterectomy with bilateral salpingo-oophorectomy (to remove my uterus, cervix, fallopian tubes, and my ovaries). I will need to go on unpaid leave for several weeks until I am well enough to work. It takes 6 weeks to heal, and as soon as I am strong enough I will have to work from home some of those 6 weeks just to keep my head above water before I can return back to my full-time job. Any support would be amazingly appreciated, even if it's just a share or a thumbs up emoji. :) I write this not only to ask for help, but also to bring awareness and validity to any people with uteruses/ovaries/etc. that suspect that they are suffering as well. Thank you.

Hello! My name is Sydney Hankins, and I am 23 years old. I am a full-time administrative assistant at an office and to get to the point, I need help.

Last summer, I went to Urgent Care for terrible pain in my pelvis and an awful pit of dread in my stomach. After some time, I was diagnosed with ovarian cysts, the biggest being almost 3in in size. Many tests and expenses later, I was suspected of having endometriosis. Within several months, I had my first laparoscopic surgery and my severe endometriosis was confirmed.

Endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus. The tissue can be found on the ovaries, fallopian tubes or the intestines and can make these things stick together. Apart from this tissue, it can also create cysts. It explained a lot.

I did not realize was how much pain I had been living with every day, and worse on every menstruation cycle, since I suspect it started growing more severe, which was high school.

Days where cramps (which are contractions, by the way), would ravage my body and would only go away sometimes with meds, a heating pad, and a specific fetal position. (you can't do this at work or at school). Days where sharp pains would stab in my pelvis and drop me to my knees. Days where my legs were numb and my feet would drag because I was developing sciatica from the cysts pushing on the nerves in my back. Days where I had to use the bathroom every 30 minutes because it always felt like there was barely enough room in my body for my bladder.

All of it was hidden by the fact that I have a perfectly normal, regular menstrual cycle. Questions stopped at this one at the doctor's office. I lived with chronic pain and had no idea, because I was regular and thought that the rest was part of the experience. I had always planned on having children and getting a hysterectomy, I didn't want this experience for the rest of my life. I never questioned why others never felt the same.

After the surgery, I still had hope that I could have children. I wanted to have babies. I didn't want them then or now, but I wanted them eventually. What usually happens is that people with uteruses get diagnosed, get surgery, get pregnant, then get a hysterectomy. I am a single, queer woman, so getting pregnant within a few years wasn't exactly an easy process.

The relief after my 1st surgery was immense; I could go up 2 flights of stairs without being out of breath, I could go to the bathroom like a normal person, I was almost pain free apart from my menstrual cycle, which I would need birth control for pain management. Other forms of pain management included various medications or shots, there are plenty. But at the cost of bone loss? Infertility? Possibly worsening of the condition? And how to pay for it?

I'm already $2000 in just medical debt, and it was guaranteed to accumulate over the years. Surgery to remove endometriosis, which is never 100% removed, usually needs performed every 2-5 years. I thought there was plenty of time to lower that debt to stay above water.

Until a few months later. Walking got harder. Periods got harder. Holding my bladder got harder. Tight pants were painful. 800mg of ibuprofen every 4-6 hours felt like vitamins. No extraneous activity. No s*x.

Just pain, which was only helped by referrals to a pain specialist. Another co-pay? And a specialist co-pay, at that? I could barely afford to go to you, how am I supposed to add this to the list? Miss work for this?

No pain meds, even though they were amazingly helpful during the weeks leading up to my first surgery and then the recovery. There was too much concern I would abuse it. That being said, I am fortunate to have an amazing care team. I have great doctors that worked well with me, and a surgeon that never made me feel invalidated or crazy like I have heard so many other times from different people's experiences. I am thankful. I'm in pain though. Being thankful doesn't make it go away.

I hid from my decline with other things, and when I say decline I mean it lightly. I am not dying. I am aware of my fortune and my misfortune. I know there is worse and better. It doesn't matter, I was declining and I was sick of it. Sick of feeling sick again. Sick of thinking about not having babies. Sick of feeling betrayed by my own body. How could it do this to me?

My second surgery was in October, after months of avoidance and fear. It was easier. It was less stressful, less unknown, I trusted that it was necessary. I got the results just a week ago. It was severe, again. The 2-5 year need for surgery was not even close to what I need. My doctor was tense and pensive as he told me.

In my avoidance, I couldn't keep away coming to terms with infertility. Sterility. It was evident. He didn't know I had already mourned it. I wonder if he was relieved. Storing eggs is wildly out of the question, tens of thousands of dollars I wish I had. I don't even have the balance back for this last surgery or my upcoming one.

Even writing this now I feel imposter syndrome. Stop being dramatic, stop being whiny. Don't spiral, don't be pitiful.

But I'm ok now. I am excited for the difference it will make in my life. I hope that there are no out-of-pocket expenses. I hope that my debt won't become more overwhelming than it already is. I hope it goes well and that I am healthy and recover quickly.

I only realize now that I have used this little description box to lay out my feelings. I don't mind much if nobody reads this, if no one sees this or can help me. I think that saying it is good, all the same to just let myself accept what is and cannot be. I know that a uterus and that having a child does not make a woman, I have options. I have lots of time.

If you relate to this, maybe consider talking to your doctor. Do not stand for being gaslit or made to feel crazy. Self-advocate. If you are in the process of dealing with this, just hold on. It will be better, things will change. I am not speaking from the other side of some insurmountable challenge, I am in it still.

I am asking for any help you can give, a share is already more than enough. I will use this to help pay for the surgery and to make up for being on unpaid leave. Just bills and food, like everyone else. Thank you for your time.