A Reflection on Life with Kallman's Syndrome

A reader emailed me this morning with the following articulate, moving message about her life with Kallman's.  I asked her if I could post it and she consented, which I greatly appreciate.  For those new to this blog, I had written about it in the past; you can find it if you google Kallman's and the name of this blog. 

 

 

I don't know exactly what it is I wanted to say to you, but felt compelled to reach out as I have never read of Kallmann's from a personal and female perspective. I feel like most information on Kallmann's is so medical that I need to google 75% of the articles and still don't have the answers I am looking for. My doctors and nurses, while wonderful, are not always the best at translating the syndrome into real life. The nurses are kind and sympathetic but often don't fully understand the condition, given how rare it is. My doctors are factual, scientific and strangely excitable. Over the years whenever I meet a new OBGYN or endocrinologist I become the source of many questions- to them I am a medical enigma, a short chapter in their med school text book, certainly not a case they'd ever thought they'd ever get to treat. 

I was diagnosed when I was 16 and put on low dosages of premarin and prometrium. I had very few side effects, my mood, skin/hair and sex drive were all great. I stayed on these medications for 4-5 years before stopping them all together (foolishly, I felt like they were making me gain weight...if only I could go back in time). After a few years of no HRT, I realized the adverse affect this was having on my body (again, the dangers of not arming a young woman with the information to make better decisions) and went through the next 7 years of trying to find the right combination of hormones to make me feel okay again. Unfortunately, at 30, I have yet to regain the balance I had in my teens and early twenties. My once beautiful hair is now dull and coarse, I have a constant spattering of hormonal acne, and have gained about 60lbs, all of which pales in comparison to my constant mood swings and chronic fatigue. Most recently, visiting a new doctor I broke down in tears and told her "I have felt terrible for so long now, I don't know if it's me or the hormones anymore." We have yet to sort that out, and I am exhausted.  

That struggle aside, I also felt compelled to contact you because about a week ago my husband and I began the process of trying to have a baby. I have been a patient of an endocrinologist's office since I was diagnosed (to find a silver lining, it is kind of beautiful to sit in the same office where I was diagnosed as a child and discuss having a child of my own)! I began my first round of Menopur injections, and have been carefully monitored every 3 days with blood work and ultrasounds (to avoid a multiple pregnancy). Like you, twins sound exciting and convenient, especially after reading that having multiple children is not a given, but my doctors are focused on one. 

I am not sure if it's the hormones coursing through my body, or if I am finally realizing the reality of my condition, but I am terrified. I have wondered a lot in the last week what it must feel like to be one of those women (many of my friends) that can go off of their birth control or "just see what happens," without having to plan every aspect of your pregnancy. I wonder what the feeling would be like to surprise my husband with the news, instead of jamming needles into my stomach wondering if any of this is possible (while he has to turn away because needles make him nauseous). Will my child be born with kidney issues, or deformities because of my condition, will my child be born at all? Every woman much have anxiety surrounding this stage of their life, but with Kallmann's tacked on, it all seems so scary. 

I've always been a driven, intense personality. I don't like to lose, and I enjoy the satisfaction of working hard to get the results I want. I feel like I don't have control of my own future- what if I can't be a mother to my own child because of my Kallmann's and not because of anything else? I feel wildly unprepared to take this on. 

Just sitting down to write this made me realize how emotional i actually am. I appreciate your blog post so much because it helped me process some of the feelings I have had for a long time but have never really translated into coherent thoughts. If nothing else, just having the opportunity to vent to someone who can actually relate is a privilege that I did not know existed and I am very grateful. 

Thank you for sharing your story and allowing me to share mine.