Patient Comments: Prolactinoma - Symptoms

What were the symptoms of your prolactinoma?

Comment from: betsy, 19-24 Female (Patient) Published: August 12

The first sign on my prolactinoma was on my 16th birthday. While in the bath, I noticed my breast had leaked a pale white fluid. I cried to my mum, who was horrified thinking I was pregnant. Obviously, still a virgin, I was so confused as to what it was. My general physician said it was nothing to worry about, so I didn't; for 3 more years. It was only when I went into the doctor's for the 3rd time, saying I wasn't having periods, was I sent to have an MRI scan. I am now 19 and have been on cabergoline for over a year. It makes me extremely ill, depressed and anxious. I am very confused about what's next for me, it seems that with my age, doctors hold off from telling me what really going on. I really hope I can have children one day.

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Comment from: curtdave, 55-64 Male (Patient) Published: April 14

I suspect that I had prolactinoma for twenty years before it was diagnosed. It affected me mostly as sinus problems, headache, mucus discharge and drainage that caused heartburn. I did also have low sex drive and was receiving testosterone injections. I went to 3 different ear, nose and throat physicians and had 3 different sinus surgeries. I went to a fourth ENT because none of the surgeries or treatments relieved the sinus issues I was having. The fourth ENT performed a CAT scan and found something unusual and sent me for a MRI. The MRI showed a very large tumor on my pituitary gland, it was so large that it had invaded my sinus cavity. Blood tests showed low T, and very high prolactin levels. Cabergoline was prescribed and in less than a month I lost 50 pounds, my sex drive was back, sinus issues went away and testosterone levels went to where they belong. My endocrinologist seems to think that the weight loss had nothing to do with the tumor but I think it does, I have not changed my eating habits or how much I exercise. It"s been over two years now and I feel great, better than I felt through all of my forties and my early fifties.

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Comment from: Keatta, 35-44 (Patient) Published: December 27

I was diagnosed with prolactinoma (adenoma) when I was about 25 years old; that was about 14 years ago. I had an endocrinologist who prescribed bromocriptine for my galactorrhea (breast secretions) for about 8 years. I asked to attempt to be off of it. He dropped me as a patient. I was off that drug until last year at age 38 when my symptoms returned. I've since had vertigo, headaches, and been to a new endocrinologist, who doesn't seem to think there's cause for concern at all. He's sending me for an MRI, considered non-emergency of course. I practically had to beg for it. I take a probiotic daily and I'm wondering if this is a contributing factor to this resurfacing galactorrhea. My TSH and TRH (hormone/thyroid) levels are normal apparently.

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Comment from: SHarb, 25-34 Female (Patient) Published: November 20

My first symptom was breast milk production, although it was very little. I didn't worry about it until we started trying to conceive and could not. One and a half years after trying actively, I started having pain during intercourse. The doctor took blood and saw that my prolactin was double what it should be. He sent me to get an MRI which I am getting next month. In the meantime I am taking Dostinex twice a week for one month. Hoping to be able to have kids!

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Comment from: BB12, 55-64 Female (Patient) Published: October 08

In 1991 my body started to shut down. The doctor who first examined me said it was arthritis, then fibromyalgia, and then nothing. An endocrinologist did an MRI that located the prolactinoma (pituitary tumor), and the out of order blood counts. I had my first surgery in February of 1992. At that point, my symptoms included severe headaches and loss of vision. The size of the tumor was larger than a golf ball. In 2000 I was surprised to have the same symptoms reoccur. I went to another endocrinologist, who discovered the tumor had grown back. After this surgery, I went for 6 weeks of radiation treatment. I now have MRIs every five years. The second surgery caused more damage, and I now have scarring on left temporal lobe. I also have scar tissue in both left and right sinuses. I will be taking medication for the rest of my life. This is very serious, a life changer.

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Prolactinoma - Share Your Experience Question: Has prolactinoma affected you or your family? Please share your experience.
Prolactinoma - Treatment Question: What kinds of treatment, including medication, were used for a pituitary tumor in you or someone you know?

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