Disclaimer: The information in this post is based on my personal experience of living with a pituitary condition and other illnesses as discuss below. This is not medical advice. It’s highly advisable to contact a medical professional to discuss Pituitary conditions.
October marks Pituitary Awareness Month and I would like to take this time to write in detail about living with a Prolactinoma and how I came to be diagnosed.
As of this year, it’s now 10 years since being officially diagnosed with a Prolactinoma, my personal type of Pituitary condition. I can hardly believe it’s been so long.
Whilst sometimes I feel self-conscious discussing the condition in detail, I truly feel that acknowledging this condition, and the vulnerability illuminated surrounding it can then illuminate hope and comfort for others processing similar things. It’s my greatest hope that this post can be something I longed for when I was initially diagnosed.
What is a Prolactinoma?
Before I break down what a Prolactinoma is, let’s first take a trip back to biology class and discuss the pituitary gland, where it is in our bodies, why it is so important, and how it works.
The pituitary is a gland about the size of a pea that is joined to the base of the brain. It is found behind the nose and the sphenoid sinus (the air space behind the face), right below another important and related structure called the hypothalamus.
Known as the ‘master gland’ from school, the pituitary gland is often called the master gland because it controls several other hormone glands in your body, including the thyroid and adrenals.
Though just a small, pea-sized gland on the underside of the brain, the pituitary is a crucial and complex hormone powerhouse that also produces many different hormones, that helps to control and coordinate the release of other hormones throughout the body.
The most common problem with the pituitary gland occurs when a benign tumour (used to describe a ‘growth’) also called an adenoma, develops.
The more common pituitary conditions include acromegaly, Cushing’s, diabetes insipidus, hypogonadism, hypopituitarism and prolactinoma. The latter of which I live with.
A prolactinoma is a type of pituitary tumour (adenoma) that produces an excessive amount of the hormone prolactin. And although pituitary conditions are extremely rare, prolactinomas are the most common type of hormonally-active pituitary tumour.
Doctors and specialists use the words ‘tumour’, ‘adenoma’ or ‘growth’ which means a swelling on the pituitary gland. These tumours only grow very slowly and many do not seem to grow at all.
Prolactin is an important reproduction hormone and following childbirth, prolactin levels are increased.
Prolactin is sometimes known as the ‘milk hormone’ because it stimulates milk production after childbirth, but it is also produced in men, although in smaller amounts.
FSH and LH hormones are in control of sex and reproduction. In women, they cause the release of the sex hormone oestrogen and stimulate the ovaries to produce eggs. Together these hormones are essential for a normal menstrual cycle. In men, they cause the release of testosterone and stimulate the production of sperm from the testicles.
The normal function of prolactin is that it stimulates the breast tissues to enlarge during pregnancy. After the delivery of the baby, the mother’s prolactin level falls unless she breastfeeds her infant. Each time the baby nurses from the breasts, prolactin levels rise to maintain milk production.
Most pituitary adenomas are slow-growing and benign, which means they are not cancer and do not spread to other parts of the body. However, as they grow bigger, they can put pressure on nearby structures, such as the nerves that connect the eyes to the brain and cause symptoms.
There are then two types of prolactinomas: microadenomas (this is my type) that are less than 1 cm while macroadenomas are above 8mm. The size may play a role in symptoms caused by local compression and may determine the therapy of choice.
Symptoms of a Prolactinoma
The following symptoms are likely in premenopausal women.
- Amenorrhea (the absence of a menstrual period)
- Irregular menstrual periods
- Galactorrhea (nipple discharge)
- Inappropriate breast milk production
- Impaired vision
- Vision loss
- Low bone density
- Increased growth of hair on the face or body
Women who have already gone through menopause may experience the following.
- Impaired vision
- Vision Loss
Symptoms likely in men include the following.
- Decreased libido
- Erectile dysfunction
- Inability to maintain an erection
- Enlargement of breast tissue
- Nipple discharge
My Prolactinoma symptoms
Before I discuss my own personal prolactinoma symptoms I had building up to my diagnosis, I thought I would discuss my medical background before then.
It was during my late teens and early twenties that a ‘clusters of symptoms’ started to develop within my body. But things truly spiralled during my time at University.
I was battling a plethora of very strange symptoms that I just couldn’t understand. However just to rewind to before my time at University, I was dealing with amenorrhoea (loss of periods). In truth, I feel I never started my periods properly as a result. Things only ‘started’ when I was put on the pill at 17. But bizarrely, when I did eventually have a period, I suffered horrific period pains, so severe I couldn’t go into college or my student job, and that one period could sometimes last for a whole month. It would then disappear for months and months and months. Before the age of 21, I probably had 2 periods a ‘year’, other than the phantom period pains I experienced.
And at this time in life, I still have no regular monthly period despite 10 years of medication to treat the prolactinoma. This lack of the seemingly ‘normal’ 28-day cycle that is drilled into us, or even beyond has left a scar of being deeply unconnected with my soul femininity that has plagued me throughout my teens and early twenties. I felt so self-conscious and still do. And I’m torn between seeing menstruation as a deep blessing but also when I do experience it, a hugely unbearable thing to endure.
Like every undiagnosed, chronically ill person reading this knows only too well, suffering in such a way is not just physically draining, but also emotionally unbearable, and especially in such formative years of my life.
I went backwards and forwards to doctors who left me with diagnoses of exhaustion, stress, anorexia and depression. The latter at least was resonating more than ever with the symptomatic lost feeling I had towards my health and life at that point.
But I forever felt that I had to fight relentlessly to be taken seriously by the medical profession and it truly felt like being in an actual ‘game’ attempting to fit the pieces of the jigsaw together myself. I started to feel like I didn’t know who I was anymore, as my body was transforming beyond my control and I didn’t know how to help or stop it getting worse.
And then the galactorrhea started and I just knew it was time that I demanded something more than symptom management and for someone to join the dots together. My galactorrhea became so severe that I felt I was pregnant and had to seek supplies as if I was. And yet in a cruel twist of fate, the majority of people with prolactinomas are infertile and often discover something is wrong when they want to start a family.
As well as the above symptoms, I was suffering headaches and severe vertigo and nausea making it almost impossible to be alone too much in case I fainted and ended up a vulnerable position. My skin was also suffering from mild acne with mild facial hair, and I was just feeling the extremes of PMS without any periods.
It was finally just about 10 years ago now that I was diagnosed with having a prolactinoma along with PCOs and endometriosis (I’ll focus on the overlaps of these conditions in a separate post). Naturally, the diagnosis was heartbreaking, but eventually, I took this pain and my circumstances and illuminated it with the start of Beauxoxo. Truly, without the diagnosis of this time, it’s impossible to say where or what I would be doing.
Tests and diagnosis for a Prolactinoma
Living with a Prolactinoma
On hearing the news I had a prolactinoma, I received a deeply concerning letter saying I had a tumour in my brain and that it would need to be operated on as soon as possible….!!!!!! Can you imagine how terrifying that was for someone literally putting pen to paper on my dissertation?! It’s taken so much strength to forgive my GP surgery for delivering the news so coldly when in fact once I was referred to a lovely endocrinologist I felt so reassured about the treatment options ahead.
In my case, I was given a full blood test to test all my hormones. I was then sent for a magnetic resonance imaging (MRI) scan of the pituitary gland by my specialist. I was also sent for other scans and treatments for PCOs and endometriosis but again, I’ll discuss that in another post.
The initial treatment for a prolactinoma is a dopamine agonist medication. Dopamine, a neurotransmitter, controls pituitary hormone secretion through receptors on the pituitary cells. Prolactinoma cells have a high density of dopamine receptors. Dopamine agonists then bind to the dopamine receptors and block the ability of dopamine to bind, preventing the cells of the tumour from secreting prolactin. These typically improve symptoms of hyperprolactinemia and cause the tumour to shrink, improving the visual symptoms as well.
The two most commonly used dopamine agonists are cabergoline and bromocriptine. I personally take cabergoline twice a week as it has fewer side effects for me however my vertigo issues remain and sadly my tumour still remains with fluctuating prolactin levels, but this is complicated due to the fact I now have Scleroderma and other off-shoots of this autoimmune condition such as Raynaud’s disease and gastroparesis.
Sometimes, the tumour does not respond to medication, or you cannot tolerate the medicine, perhaps due to unwanted side effects. Or in my case, other conditions might complicate the way in which the medication works. At this moment in time, this is where I stand with my prolactinoma, as the medication I take and need for Scleroderma interferes significantly with my prolactin levels. In this unusual and rare case, a specialist may recommend surgical removal of the tumour as mine has.
Whilst I sometimes have a habit of searching for light, hope and meaning in everything, it has also felt necessary to acknowledge and grieve the above deeply this year and how my current circumstances have left me unsure what direction my prolactinoma will now take.
It’s such a deep contradiction that I can readily discuss my more sinister and more menacing autoimmune disease and yet I often close-off when it comes to discussing my Prolactinoma so I feel deeply vulnerable but so proud for writing this with as much honesty, and as much as it has felt comfortable to do so. But without doubt, these 10 years have taught me that once illuminated within with light, that pain can become something of a spiritual mentor.
And whilst this is not a happily-ever-after story, rather it is still unfolding, and as much as I can focus on the positives above, I think we still wish we could do more and have more no matter who we are.
But even on the worst days all I want to do is help others so they don’t have to suffer the long anguish of isolation and pain I suffered on my long battle to be diagnosed.
Finally, I wanted to post this here because I know there’s a lot of people out there like me who have battled with ‘clusters of symptoms’ with no support and no light at the end of the tunnel or have watched loved ones go through this painful time.
But most importantly, if you have a Prolactinoma, are waiting to be diagnosed or recognise yourself with some of these symptoms, please know that the treatment options nowadays is wonderful, as well as the understanding about the condition.
I really hope this account of my own journey has helped to comfort and seen in the light of the fact it is only my other illnesses making mine so mystifying and troubling at this current stage.
Support and further information for Pituitary conditions
A huge thank you for taking the time to read this and engage in any way you can with this awareness month. Truly, your constant love and support is the strength that I use to create impossible things.
If you want to help me raise some money for the vital work the Pituitary Foundation do, you can shop my Depop shop throughout October and November, where I will be donating the money to the vital work done at the Pituitary Foundation. Otherwise, sharing this post would be the kindest, most wonderful thing you could do for me.
If you have any questions about pituitary conditions, and specifically a prolactinoma, please leave your questions and comments below and I would be thrilled to connect with you all. Thank you so much for reading again xoxo
Thank you so much for sharing your story. As someone who has just been diagnosed with prolactinoma reading about and relating to your experience is so comforting.
All the best with your journey.
Thank you so very much for finding this post, Clare. I am so, so sorry for your diagnosis but I am so glad this post has been of comfort to you. I’m sending you all my deepest thoughts in the world. Whatever challenges you’re facing in your life right now I promise you have what it takes to make it through always. Sending you so much compassion and so much strength. I’m always at the end of an email or comment if you want to reach out for understanding. Love Georgie xoxo
I arrived here because yesterday my dr got my blood work results back and said my prolactin levels are high. She wants me to do an MRI, I haven’t gotten my period in almost a year but that’s my only real symptom. I have acne but I figured it was from wearing a mask all the time. I also have sprouted a few hairs on my chin (gah!!!). I have severe Generalized Anxiety Disorder as well as Hypochondria so I’ve been having panic attacks unless I read your post.
I’m now almost sure I too have a prolactinoma and I feel better knowing I’m not gonna drop dead tomorrow!
You’ve made me feel a lot better and I wanted to thank you. I haven’t done the MRI as yet but I already know. Thank you again, looks like I don’t need these Xanax after all:/
Hi Nattalie, thank you so very much for your message and for reading my story with this. I am so sorry you could have a Prolactinoma/the symptoms of one right now. I for sure identify with everything you have above re symptoms 💕. Please don’t hesitate to email me if you ever want to chat. I am holding you deeply in my thoughts and thank you so much for stopping by to leave this comment. Take such good care of yourself and I see and hold you ❤️ xoxo
Thanks for this Georgie. Like above, I have an MRI test for this soon and my doctor thinks prolactinoma is likely. From thinking this morning I probably just had some stress related cycle changes, suddenly hearing someone on the phone talking about brain tumours and possible surgery was slightly terrifying! Reading your post has made me feel a lot better, Thankyou xx
Thank you so very much for finding this post, Gemma. I am so, so sorry you could have a Prolactinoma, but I am so glad this post has been of comfort to you. I’m sending you all my deepest thoughts in the world. You’re never alone, I promise. Yes, it’s always SO scary when the mention of brain tumours are mentioned. The way the news was broken to me will most probably haunt me forever. Take such good care of yourself Gemma. I promise you, you will be okay. But if there are moments you need to talk on your journey with this, please know I’m always at the end of an email or comment if you want to reach out for understanding. Love Georgie xoxo