The First Days

I will never forget the day I was diagnosed with Behcet’s – February 19th, 2009. I had a particularly bad case of genital ulcers, and my OBGYN was not able to work me in. I had been seeing the same OBGYN for about 7 years, for treatment for the ulcers and some pretty nasty cramping and cycle issues. We had a love / hate relationship – when I had first visited him at the age of 14 for genital ulcers, he had insisted I was just lying about being sexually active and contracting Herpes. He told me that it may be a different condition, but he had only seen one other patient with the condition while he was practicing medicine, so I just needed to be honest.

Over the years, I had visited him several other times for cramping, heavy bleeding, and irregular (and generally awful) cycles. He had seen me only a few months before when I was practically bedridden from cramping and diagnosed me with an arcuate uterus, and we had been on better terms since then. But, since I wasn’t particularly attached to him and really wanted answers for the recurring ulcers, I made a call that changed my life. At the urging of a friend, I called another OBGYN, one who specialized in high-risk obstetrics. This doctor was able to see me within hours, so I readily took the appointment.

Going into the office, I filled out pages of paperwork with my various medical issues, and waited. I was only about 2 months post-op from my first set of clots, so I was still learning how to navigate giving my medical history to the nurse. When my doctor entered the room, I told him about my genital ulcers that had been plaguing me for my entire teenage years, and he began to ask questions. I told him about a retinal detachment that happened my senior year of high school; a seemingly random arterial clot; my sordid history with my menstrual cycles. He continued to ask questions, and then patted me on the shoulder and told me he would be right back. He returned with a single sheet of paper, and gently told me that he thought I had a disease called Behcet’s. He wanted to do some bloodwork and get me in to see a couple of other doctors who could confirm or reject the diagnosis. He handed me the single piece of paper – the only page in any of his med school textbooks that gave information on this mysterious illness, and cautioned me against using internet message boards when I did my own research. He also gave me a prescription for Lidocaine ointment, which was the first time that a doctor had ever validated the physical pain that went along with my ulcers. Sidenote: For anyone who has not discovered this gem, Lidocaine ointment is the only thing I have ever found to help with the pain of the ulcers. No more squirt bottles or immediate baths after urination, just use a little of the Lidocaine and it’s almost as good as new. For someone whose ulcers tend to be more like gaping, weeping craters, this changed my life!

I left that doctor’s office feelingĀ happy because someone had finally given me an answer. Someone had finally said that things like this didn’t happen to everyone. Someone had finally connected all of the “random” medical issues I’ve had and put a label on it. I assumed I would get some bloodwork back, see the other doctors, and pop a pill each morning, and then get my life back.

In the parking garage, I read the page that talked about Behcet’s. It seemed to describe me, and it didn’t seem to be very horrible. I remember calling a dear friend and saying the now-ominous sentence, “I mean, it can’t be that bad – there’s only one page in a medical textbook about it.” I called my parents and told them. They reacted differently – they became very worried and had a thousand questions whose answers were no where on my sheet of paper.

In the next few days, I got calls from the doctor’s offices that I had been referred to, and oddly enough, both receptionists said something along the lines of, “Dr. X is pretty booked, but (he) has moved some things around and can see you next week.” I didn’t really understand the urgency, but I happily agreed to the special treatment. I was used to doctors telling me that my symptoms were odd, but nothing to worry about.

As I waited for the appointments, I began to do some research of my own online. I started to realize that I was in for a much bigger medical experience than I had previously thought. I was suddenly thrust into two doctors appointments. One with a dermatologist, who was wonderful and helped me navigate many of the obstacles that came up in the first two years of treatment, and the other with a rheumatologist, who proved to be my first experience with a doctor who chose a treatment course without consulting my individual case or symptoms.

I will forever be grateful to (and still see regularly), my new OBGYN who, all dramatics aside, saved my life. With the progression my case has taken, I firmly believe that had he not remembered that one page in one of his textbooks, I would not have made it to today, or at the very least, I would not have made it to today in one piece. Doctors who genuinely care and take the time to work with patients are rare, and I am so blessed to know some!

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2 thoughts on “The First Days

  1. Alison,

    Oh my gosh! Reading this was so much like my own story. All the STD tests, all of the looks from the nurses and staff and comments like, “Now, please just tell the truth, it will help us to help you.” Then the condescending looks, and the “Hmmm”s from the physicians. When I was finally diagnosed up at Mayo Clinic, I remember leaving the appointment, getting out into the hallway, and breaking down and crying. I wasn’t upset in the sense that my life was being destroyed, but I felt so…validated. So happy that finally someone listened, someone put all the pieces together. I was even more excited to find out that they caught it so much earlier than they do in most cases. Even though my disease is aggressive, it’s definitely a candidate for remission.

    I can’t imagine the strife you must have gone through. 14! I’ve heard the younger the disease shows symptoms, the worse it is. I did want to ask you if you notice that your flares tend to be worse around your menses? I feel like whenever I have a particularly bad period, the Behcet’s is especially bad too. Since the disease tends to occur more in men, it’s difficult to find information.

    So happy you’re telling your story!

    XX
    Nikki

    • Hey Nikki,

      Thank you for your post – it’s always great to hear from other people who can relate to all of this – it doesn’t happen very often!

      Because my uterus is misshapen, I have difficult cycles. And, whenever I start a new immunosuppressant, I tend to not have a cycle for 3 – 6 months while my body finds its homeostasis again (I’ve spoken to my doctor, and this doesn’t seem to be common amongst other women on immunosuppression therapy, but it does happen to me each time). So, it’s hard to connect menstruation with symptom flares for me. However, one pattern that I have found is that anytime I run a fever, I will become symptomatic with ulcers and occasionally more severe symptoms. For instance, in 2010 I had the stomach flu on Monday and Tuesday, and was in the hospital with a set of clots by Saturday. My job causes me to be exposed to illness more often than most people, so it’s a pretty tried-and-true pattern for me.

      A

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