Abby has graciously shared her story of her battle with endometriosis as part of our Endometriosis Awareness editorial series. She lays it all out- the good, the bad, the ugly. We applaud her courage and vulnerability, and encourage other women to share their stories.
If you haven’t read Abby’s Story, Part 1: Diagnosis and Treatment, find it here.
The First Meeting with Dr. Khan
As soon as he walked through the door, I was blown away by him as a person. Dr. Khan was so welcoming, so kind, and so positive. It was weirdly one of the best medical appointments I had ever had. I felt validated, and that I was talking to someone who understood- and believed- what I was saying. He never made me feel like I was exaggerating, or just “being a baby” about it. It was very clear to me that he had not only the knowledge and confidence, but that he was dedicated to figuring out my situation, no matter where it led. He made me feel confident, and that we had a plan. “We’re going to get through this, Abby,” he said. This positive attitude has played out with every single person in that office— the entire medical team.
First, Dr. Khan ordered an MRI, which I had never had up until that point. Endometriosis can spread to distant places in the body outside the pelvis and invade into surrounding pelvic structures like the bladder, ureter, and bowel, and he wanted to see where it was in my body. I remember being horrified, as it made everything seem very real. It was scary. The MRI showed that the endometriosis had grown back and spread again, all over the pelvis. He scheduled my surgery. Before surgery, he ordered bloodwork to check my egg reserve. It was decent, but every time you have ovarian surgery, there is the potential to decrease the egg reserve, which ultimately ended up happening to me.
The morning of the surgery there was a snowstorm, but somehow I was mostly calm, until they came to take me back to the operating room, and then I lost it. There were a LOT more people in the operating room than there had been for my other two surgeries, and I was terrified. Dr. Khan put his hand on my leg and said “It’s going to be ok,” and went to prepare. I just bawled, I was so scared. Everyone was kind and friendly, but one nurse looked me in the eyes. She completely stopped what she was doing, walked over, and just held my hand and rubbed it until I fell asleep. She did nothing else. And that made such a difference. That small gesture was so important to me. I asked Dr. Khan find her after surgery to tell her how much those few minutes (or seconds…it’s a little blurry) really mattered.
After surgery, Dr. Khan told me he had removed all of the disease he could see, as well as my appendix. That recovery was harder than my previous 2 because he was aggressive—which is what you want—but the recovery was rough. However, after surgery, for the first time in about 5 years, my GI symptoms and digestive issues disappeared. It was amazing.
At my 6-week post-op appointment, Dr. Khan told me the next step was Clomid and Intra-Uterine Insemination (IUI). I have never been one to google things—a conscious decision—because it just adds to my anxiety and is a rabbit hole that I’m not willing to go down. As a result, I had no idea what to expect. I have a lot of PTSD, so my body gets extremely tense, making the IUIs very painful. After the first IUI, my period was late. My hopes were so high that it had worked right out of the gate…and then the next day I woke up and got my period. I did not anticipate the emotional toll this would take on me. There was no baby, so I didn’t experience a true loss, but it felt like a devastating loss all the same.
I did not anticipate the emotional toll this would take on me. There was no baby, so I didn’t experience a true loss, but it felt like a devastating loss all the same.
I was a mess. I avoided social settings where I might encounter pregnant people, because I just couldn’t. I would go to Target, see a pregnant person, and just leave. I was so mad. When does someone who has gone through so much finally catch a break?
Before my final results of my fourth (and last) IUI, I made an appointment with Dr. Khan. I needed to have a plan for what to do if/when it didn’t work. We had a really productive discussion and created a plan for the next steps. When the test came back negative, I wasn’t devastated, because we had a plan.
Before starting In-Vitro Fertilization (IVF), the team ran my bloodwork and found that my egg reserve was very low, and that the endometriosis was growing back. This felt like a punch in the gut; a lose-lose situation. No surgery would have meant no pregnancy, but having surgery reduced my egg reserve. Oh, and by the way, the endometriosis was still growing back. Once again, Dr. Khan talked me down to earth, and assured me that the growth was small, and that we were still ok to proceed with IVF.
IVF brings lots of big appointments. Lots of numbers, a big financial meeting, signing a ton of papers, pay rent space for the embryo, and so many other things I didn’t expect. After that was my first drugs and administration meeting. I sat there feeling like I was there physically, but not there at all, just in a fog. The nurse came in with a basket of needles, vials, and things to practice injections on, and I just burst into tears. I was so overwhelmed. She kindly suggested that we do this part another day. 10 days later, I came back by myself, and sat with the nurse for 2 hours. She never looked at the clock. She went through everything with me, patiently, one step at a time. At one point I broke down crying, and she started crying as well. She gave me a hug, and it made me feel like she was on my team. Now I had 2 people: Dr. Khan, and my nurse Tiffany.
When I started my first night of injections, I did them myself because I felt like I needed to have some control over what was happening to my body. In my life, I have never had control over what was happening to my body. After years and years of being examined, touched, invaded with ultrasounds, and cut with surgeries, my body didn’t feel like it was mine anymore. I also needed to show myself that I could do it. So here I was with the 2 shots in front of me in the bathroom. I remember wanting to throw up, so I sat down on the toilet lid. The first one was like an epi-pen, so I couldn’t really see the needle. That one wasn’t bad. The second one was a legit needle. After giving myself the 2nd injection, my skin started burning. I was so paranoid that I had done it wrong and called the pharmacy in a panic. The pharmacist reassured me it was normal, that particular injection really burns, and gave me some advice to help manage it.
After that, we developed a system where I would give myself the first shot, and someone (my husband or my mom) would give me the second shot. My parents were consistently supportive: “Abby you are tough, and you can do this. YOU CAN DO THIS,” which really helped me to keep going.
Finally, I had enough follicles to do the egg retrieval. The retrieval was a success, though I was scared the whole time. Not only was it a different physician doing the retrieval- a trigger of mine- but also I knew that when I woke up we would either have healthy eggs, or none, and then it would feel like a total waste. We had 8 eggs, and I cried because I was so happy. But I was not naïve, I knew that 8 eggs doesn’t mean 8 embryos. 2 embryos made it through to the stage where they could be implanted. The night before implantation, I was in a weird headspace: my babies are literally in a dish at Mayo. For the implantation, they gave me a valium to keep me calm, as you are awake during the procedure. My PTSD from all the pain, exams, and appointments makes me so tense, and they want you to be as calm and relaxed as possible for the implantation to be a success.
Miraculously, the first implantation took, and I was pregnant. It admittedly took a long time for it to feel real though. For the first several appointments, I really didn’t have much emotion. I suppose it’s self-protective, after so many disappointments in the past. After being able to hear his heartbeat, and seeing him kicking on the ultrasound and seeing his features, it has finally started to feel real.
We do know that because my endometriosis is very aggressive and keeps coming back, I will have to do IVF again, likely starting 6-9 months after baby is born. While that thought is daunting, I showed myself that I did it once, and can do it again. I know that just because it worked on the first try last time, there’s no guarantee or expectation that it will again next time. It could take a few rounds, or not work at all. At this point though, I can’t risk another surgery (which I will eventually need) with my egg counts as low as they are. But for now, I am thankful, and focusing on this pregnancy and baby.