THINGS YOUR ENDO WON’T TELL YOU, AND MIGHT DENY

I haven’t been on this forum in some time. I figured I would return since I am pretty much starting this process all over again.

BACKGROUND

Eleven years ago, I was diagnosed with a Prolactinoma.  I was only 16, but I was overweight and did not have periods.  I was VERY active. I participated in sports year-round (volleyball, basketball, track, golf, etc).   I also had relatively decent eating habits.  As a teenage girl, I did not cope with the weight gain well.  Each year, I weighed more and more.  I remember being 14 and having someone very close to me tell me they were concerned about my weight because I had put on so much so fast. I was devastated. I battled with depression and anxiety daily.  Eventually my sweet great grandmother hired a personal trainer to help me lose some of the weight.  To my trainer’s dismay, I did not lose a pound. This ultimately led everyone to believe I was lying about what I ate, which was not the case at all. I was eating nothing but protein, vegetables, and a very small amount of grains.

When I turned 16, I had my first trip to the gynecologist. She was surprised I had not had a period and tested various hormones to see if there was an issue. My thyroid results were normal, but my prolactin levels were the highest she had ever seen.  I was treated with Cabergoline, which was successful. The prolactin levels decreased and I lost nearly 50 lbs.

TODAY

I have been off Cabergoline for 7 months due to financial issues and poor insurance coverage and folks, I am back at square one; twenty lbs. up in two months, no cycle, extreme fatigue, crippling anxiety and depression, body hair, no libido, you know the drill.  I will be seeing a doctor next week, so I figured it was time to reflect on a few things I have learned along the way.

THESE ARE THE THINGS YOUR ENDO WON’T TELL YOU (And will more than likely deny are related to your condition)

ANXIETY- I have dealt with anxiety for my entire life, but it becomes extreme when my prolactin is elevated. After 10 years of dealing with this, I can say confidently these must be linked. From the time I wake up, until the time I fall asleep, my brain is spinning.  My mind does not shut off.   I have a very difficult time adjusting to new situations. I find myself avoiding human contact if possibly. I sweat uncontrollably.  I grind my teeth at night. I usually have to convince myself to leave the house. The only thing that really forces me to is my financial situation.  I have to work (3 jobs actually, thank you shit economy), so staying home in bed is not an option, but I promise if I could, I would.  I live in a constant state of nervousness and fear that can come about for no real reason at all.

MEMORY LOSS- This started out very mild. I would forget the name of a movie or song. It eventually became worse, I would forget entire days. I could not remember certain words and would stop mid-sentence.  I would look at something I did at work and not remember doing it at all. I feel very “foggy” most days.

BODY HAIR- It started out with just a few hairs here and there on my chin and neck. Now, we are in full beard mode. I have to deal with hair removal daily.  My endo told me this was non-related and that facial hair can happen in some women and recommended a few removal techniques (Gee thanks) and also prescribed me Metformin for some reason she did not explain very well. I did not end up ever taking it. The hair is not limited to my face; I have hair on my stomach, nipples, and pretty much everywhere else.

FATIGUE- Oh the fatigue. Waking up is EXTREMELY difficult, like put your alarm clock on the other side of the room to make sure you have to physically get out of bed to shut if off difficult. I found myself taking naps in my car on my lunchbreaks. At times even driving my basic commute to work is scary because I feel like I could fall asleep at the wheel.  When I get home and lay in bed it is over. I will be sleeping within minutes.  No amount of sleep I get seems to help. I never feel rested.

WEIGHT GAIN- This is what initially led me to seek help.  My weight WOULD NOT BUDGE no matter what I did. I am a personal trainer and am very knowledgeable about weight loss. I have tried everything;  low carb, carb cycling, Paleo, Adkins, South Beach, Mediterranean diet, Weight Watchers, high fat, low fat, high protein, vegan, vegetarian, juice cleanses, dairy-free, gluten-free, sugar-free, and the inevitable “fuck it” diet where you just eat whatever the hell you want because nothing works anyway.  I have also stuck to a strict exercise schedule my whole life. For the past ten years specifically, I strength train five days a week with heavy weight, with additional yoga and HIIT cardio added. I was told that weight is not linked to Pituitary tumors and additionally I should eat a healthy balanced diet and exercise more (thanks Doc). During this visit (2 years ago) I was 4 lbs. up from my normal weight after they decreased my Cabergoline dosage. My endo suggested I might be dealing with an image problem and that I would need to understand my limitations. She assured me this was a normal weight.  30 lbs. up from that weight is where I am today…..

EATING DISORDERS- This sounds like a no brainer, but what does one think is going to happen if no amount of diet/exercise helps with weight? You are going to have a VERY unhealthy relationship to food/exercise.  Because weight loss and maintenance are very difficult with a proloactinoma, it can be EXTREMELY difficult to cope. This led me to several bad habits, bulimia ,anorexia,  and over exertion, just to name a few.  

LOW/NON-EXISTANT LIBIDO- When my prolactin is elevated, I could literally go my entire life without even thinking about sex. My poor husband.

RED TAPE/EXPENSIVE- If you do not have great insurance, treatment is not cheap. It also is never ending, since I will likely need this entire life. Most insurance companies do not cover this medication anymore, or at least not enough to make a difference, and I have paid up to $500 a month for it. Not to mention, every time I change doctors, they make me jump through hoops to get my prescription by conducting numerous tests with various different doctors.  MRI’s, lab work, endocrinologist appointments, optometrist appointments, neurosurgeon appointments are all very costly. You will need to make sure you have a low deductible if you have this condition, otherwise you will find yourself paying a lot of medical bills, or just stopping treatment (like I was chose to do).

CONSTIPATION- Could be a week sometimes before I go number two. This is listed as a side effect of Cabergoline, but when I asked during my visit, this was dismissed and was told to eat more fiber.

DEPRESSION- How could you not fight depression when you are a tired, groggy, anxious, sweaty, sad, smelly, stopped up, infertile, chubby girl with a lady beard and nipple hair? Am I right?

Moral of the story is, you are not crazy. Once I discovered this forum, I felt like I was no longer alone. Most doctors I have seen (and trust me I have seen many all over the US) do not have as much knowledge about this condition as they should. More than likely, you will walk in knowing more than they do. Do not give up. These side effects are real. If you spend more than five minutes on the internet reading through various forums, it won’t take long to see most people are going through these exact same things.