I apologize in advance, this is kind of a long winded explanation that brings me to where I am now. My pelvic pain story spans many years, with varying levels of discomfort. If you make it through this, I promise the next entries won’t be so meandering.

Nearly five years ago, I went to my local emergency room with intense pelvic pain. At the time, I was not on my period, and only had major pain (mostly in the form of cramps, with the occasional ovarian cyst) right before and during my period. I remember going to see my primary care doctor who told me that he had no idea what was going on, and that I needed to go to the ER.

I called my boyfriend (now fiancee) who met me at the hospital. He was there with me when I had my first internal ultrasound, which right then and there was absolute torture. I remember crying and yelling in the private little room, feeling immense pressure and pain as I was prodded with the internal wand. The OBGYN said, “that’s it!” and that was the moment I learned I had a growing fibroid. Before this moment in time, I had never heard about fibroids, and cried, asking the doctor to remove it, having no knowledge of the condition. When he told me that it wasn’t something they would be removing, and that it was only the size of a grape, I remember feeling so frustrated. I didn’t care how insignificant the size of it was – it was hurting me, enough to visit the emergency room – and I did not want it in me.

Of course nothing happened that day of significance. I was sent home with a mild pain killer and was recommended to find a doctor who had experience with fibroids. Being in New York City, I was able to easily find an OBGYN with my insurance at the time who had experience with fibroid removal.

I visited Dr. Zhanna Fridel within a month of my ER episode. She was such a lovely doctor who truly cared about my reproductive health. Instead of opting to remove the fibroid, Dr. Fridel put me on a birth control regimen of overriding my periods and had yearly ultrasounds to check on the progress of it’s growth. This was fine for a while, until I became a freelance photographer, and lost access to insurance that Dr. Fridel accepted. For two years my primary care doctor refilled my birth control and my yearly ultrasounds never happened.

Fast forward to fall 2015. I have gall bladder surgery after learning my gall bladder is enlarged and infected. Deciding to kill two birds with one stone, I requested an OBGYN to be present during my laparoscopic surgery to peek around in my pelvis. Dr. Fridel had always assumed that I had endometriosis in conjunction with my fibroid, so I figured we might as well take the opportunity to take care of any lesions that may be present.

Before my surgery, the resident OBGYN asked me if I would like to have my fibroid removed if they deemed it safe. I decided not to give permission for this to happen as I feared that cutting into my uterus would affect my chances of fertility in the future. When I awoke in the recovery room, the OBGYN was there to update me. She said they did not find endometriosis implantations, but that she suspected I had adenomyosis in my muscles. She also informed me that if I had signed off on it, she easily could have removed my fibroid right then and there with likely no repercussions. At that moment I didn’t really care that I hadn’t had it removed as I figured it was better to be safe than sorry.

Then, around Thanksgiving 2016, I started having intense pelvic pain. Not having an OBGYN, I decided to go to Planned Parenthood for my annual exam. I let my provider know my pelvic history and asked them what they thought I was experiencing. I was feeling the urge to pee all the time, even if it was small amounts of water in me. My pelvis had so much pressure and often times crazy throbbing sensations. My PP provider had me get ultrasounds.

At the ultrasound appointment, I was asking the technician what she was seeing. Of course she was weary to say anything since she isn’t a doctor. I asked her if I had any ovarian cysts, and she said I had one small one on my left ovary. I pestered her to see if I had anything on my right side, as that had been my most intense area of tenderness at that time. She commented on my fibroid but said there was nothing she could see on the right side that should be causing me pain. I left that appointment feeling terribly depressed and in tremendous pain from all of the pressure of the internal wand, and the external sonogram.

After the ultrasound appointment, I took the subway back to my neighborhood. When I got off the train, I was feeling sick from pain and discomfort, which was radiating on my right side. I decided to be safe, I should go to CityMD (our local urgent care) to see if they had any feelings about what I was going through. At CityMD, the physician was very concerned that the location of my pain could be appendix related, so he rushed me to the ER.

At my local ER (the same one where I was originally diagnosed with the fibroid years before) I received a CAT scan and IV drips of pain medication. I was in so much pain (likely from all of the pressure from the ultrasound earlier in the day) and beginning to get concerned. Luckily, the CAT scan came back negative and I was released. The ER doctor decided I had a UTI and was constipated (which I knew wasn’t true, as I have no issues in that department) and I went home frustrated, but relieved to know my appendix wasn’t messed up.

A few days after my ultrasound and ER day, I received a call from my Planned Parenthood provider. She left me a voicemail insisting I call her back immediately, so of course I got in contact with her as soon as I could. It was then that she let me know that my uterus was greatly enlarged, my fibroid had grown tremendously (went from being the size of a grape to the size of a clementine) and my left ovary was also enlarged. She said that all of my pelvic organs had shifted to accommodate my situation, and that I needed to find a specialist right away.

It was at this point that I had my first breakdown. All alone, I began to cry. At this moment, I decided that mentally I needed to expect the worse in regards to my fertility, and to put my health and well being as my number one concern. I shared the news with my fiancee, who was amazingly supportive. I let my friends and family know, and started looking for a specialist.

I asked my neighbor, who also works at Planned Parenthood, if she had any suggestions for an OBGYN specialist. She immediately suggested a woman associated with NYU Langone. I was able to book an appointment with her – but wasn’t able to be seen until early March. Me, making this appointment in mid December was gutted. I knew I wanted to see this doctor, but was crushed I would have to wait so long.

I kept investigating and found that the doctor who originally diagnosed my fibroid back in the emergency room years before was practicing locally and accepted my insurance. I was able to make an appointment for 1/20/17 – inauguration day – and booked that right away, keeping the NYU Langone doctor as a second option…