5 years ago, my dermatologist gave up on all of her meds and sent me back to my endo with an hormone (basically, birth control) prescription. My endo agreed to put me on it, and did some blood work. The levels came back extremely high. And stayed high. So, my endo decided to put me through extensive testing. I was tested for several diseases, including tumors, and genetic diseases. One day I spent most of a day at TCH, getting blood work drawn, going back to get a shot, then doing more blood work. I was sent to have an ultrasound done.
I was scared.
Really scared.
Then, she sent me to the GYN next door on that floor. She looked at my ultrasound results. And kept looking. She kept sending people in there to check on me, saying that she was still looking. I'm not kidding, this went on for 2 HOURS.
I was panicking.
Finally, she came in and said a whole bunch of things with dangerously italicized mights and thinks.
My mom and I headed back to the endo. I was in tears.
The endo agreed to see us, and told us that I would probably be okay, but I might not be able to have children.
I was devastated.
I was 16.
She decided to do some genetic testing, and said it would take 6-8 weeks before we would know the results.
We waited.
And waited.
10 weeks rolled by, and we never heard anything.
Finally, my mom called, and the nurse on duty said that the results came back fine, that's why they didn't call us.
I never found out why those levels were so high.
About a year and a half ago, I got off of the BC pills, because they make me cry all the time, and it was getting to the point where it was, seriously, all the time. The breaking point was my crying at school. Which was college. Which was really embarrassing.
I got off of the meds the next week. I just couldn't handle it anymore.
Fast forward 3 months, and I started going to an adult endo.
I never said anything about the hormone thing, until my acne started coming back horribly.
At my last appointment, she did blood work, and put me back on BC until the results came back. When they did (high, again), she put me on spironolactone. I had to get off of the BC, because I was in tears all the time, AGAIN. The new med took about 6 weeks, and now my skin has cleared up A LOT.
I went back to the endo again today, and we told her that story. She looked at me and said the reason that my levels are so high, because I have PCOS. She showed me the levels, and explained it to me. She said it didn't show up on the ultrasound because people with milder cases (like mine), don't have the cysts all of the time, and I likely didn't when the ultrasound was done.
To some, that diagnosis might have been devastating. To me, it was an answer.
She said that if I stay on my current med, and try to keep my weight reasonable, that, while it may take a little longer than "normal" to happen, I should be able to have kids.
Years ago, I had swallowed that bitter pill, and it's been in the back of my mind ever since.
Oddly enough, that diagnosis set me free. Free from years of pain and worry. Free from thinking that it really wasn't worth it to pursue any kind of relationship, because it might end in heartache from something I couldn't help.
Anyway, I hope this can help someone else.
Get answers.
Push the issue.
It just might set you free.
Thank you for sharing this story. Being given another diagnosis is never fun, but I can totally relate to the relief of finally having an answer. Not knowing is always the scariest part.
ReplyDeleteI understand this, Emily. When I first became ill two years ago, multiple sclerosis was the last thing on my mind (I was initially diagnosed with an inner-ear infection), and when it was first suggested, my reaction was "Anything but that!" However, by the time I was diagnosed with MS, there was a sense of relief - I felt as if I had been going mad, I felt guilty because I had been off work, and I was terrified by all the what ifs and uncertainties. Once diagnosed, though, I could research it, make a plan, get treatment, etc, as distressing as it was to be diagnosed with such a serious disease. The way I always viewed was: I had MS anyway, whether or not I had been diagnosed with it, so it was always going to be better to know.
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