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Georgie xoxo

Seeking Whimsy, Enchantment, Wonder and all things Whimsical

Whimsy Wednesday Newsletter

A monthly email for those seeking whimsy, wonder and enchantment. Plus, your FREE Whimsy Wellness e-book & more magical exclusives.

Living with a Prolactinoma: Life with a Pituitary Tumour & How I was diagnosed with a Prolactinoma

29th October 2019 by Georgie xoxo 3 Comments

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.

Image Source

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.

Image Source

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.

Prolactinoma Symptoms

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.

  • Infertility
  • Amenorrhea (the absence of a menstrual period)
  • Irregular menstrual periods
  • Galactorrhea (nipple discharge)
  • Inappropriate breast milk production
  • Headache
  • 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.

  • Headache
  • 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
  • Infertility

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

https://www.pituitary.org.uk/information/pituitary-conditions/prolactinoma/

https://patient.info/hormones/prolactinoma

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

Click here for my Prolactinoma Posts

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Filed Under: Prolactinoma, Wellness

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Comments

  1. Clare says

    13th December 2019 at 6:37 pm

    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.

    Reply
    • Georgie xoxo says

      20th December 2019 at 3:12 pm

      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

      Reply

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Hello!

Georgie
I’M GEORGIE

Welcome to Georgie xoxo a whimsical blog for seeking everyday whimsy, with a heart full of wanderlust focusing on travel adventures, pretty crafts, chronic illness and words on finding the meaning in life through wonder and enchantment.

It’s my ultimate hope that it will enable you to travel into the deepest realms of wonder and enchantment so that you can truly feel and embody your own world, and the world around you, that can be filled with more magic than you could possibly imagine.

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Whimsy Wednesday Newsletter

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Dear younger Georgie, These are the things I woul Dear younger Georgie,

These are the things I would have wanted you to know this time last year as you celebrate being another year older. 

You were right to choose the word abundance for this year. Although, I don’t think you truly understood the true meaning at the time. Now you’ve learnt that true abundance, magic and the blessings of the universe are within you and around you always. 

You’ll find yourself on an alchemical process of turning dis-ease to simple ‘ease’. The flowing and harmony of life. You’ll finally learn how to move through emotions rather than allowing them to calcify in your bones. You’ll utilise a sense of watery spaciousness. Like the ebb and flow of the gentle tides you watched with awe in Saadiyat Island and the Caribbean. You will become that water. All your sacred energy will be charged by these waters.

You will sink into the golden nectar of your internal world and it will keep you centred and grounded without the pressure from the external world. And there you will finally feel at peace.

Ultimately, life is going to ask you to be constantly courageous. A chance for you to be really brave again and again. So know that no matter what you choose in life you will be met with depth. But to be alive is to be connected. Look only to your own divinity. A beautiful vehicle that carries your soul through life.

Holding you more closely than I ever have before and I promise to look after you from now on. A celebration of a year around the sun means that life gives you another gift. So, keep going small whimsical one. It must be so nourishing to feel the current of life within you again. 

Love, older Georgie xoxo 

#thecaribbean #barbados #growglowcreate #barbadostoday #barbadoslife 
#islandlife #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost #luxuryworldtravel #wanderlusttribe #caribbeansea
#womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy
One of my bucket list goals in life was to see fla One of my bucket list goals in life was to see flamingos in the wild and I got my dream this January 😭🦩.
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Bonaire is abundant with their love for flamingos. Their airport is even pink and called 'Flamingo Airport'!
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The Pekelmeer Flamingo Sanctuary is one of only 4 areas in the world where Flamingos breed, making Bonaire the ultimate spot for those who love flamingos as much as me.
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Tourists are not allowed in the sanctuary, but the birds can be watched with binoculars from the road or nearby Pink Beach. The Caribbean flamingo is also the most colourful of all species of flamingos, due mainly to the red carotenes in their diet.
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Before I go, some flamingo facts no one asked for but I need to share (🙈): A group of flamingos is called a ‘flamboyance’. Both flamingo and flamboyance come from words referring ‘to fire’. And Flamingo comes from the Spanish and Portuguese flamengo, literally, ‘flame-coloured.’ And finally, Flamboyance comes from French, meaning ‘to flame’ or ‘flair.’ 🦩🇧🇶💓
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#thecaribbean #bonaire #growglowcreate #bonaireisland #flamingo
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#womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy
If you have been to Bonaire, you might have spotte If you have been to Bonaire, you might have spotted the distinctive line of white salt pyramids at the southeastern end of the island. Each pyramid, roughly 50 feet high, contains approximately 10,000 metric tons of 99.6% pure salt. Within these huge mounds of crystals is the Flamingo Reserve that is protected. Bonaire is known for its love of nature and I have so many more images to illustrate this coming soon. And yes I did spot some flamingos in the wild and it was indescribably magical 😭💓🦩🇧🇶
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#thecaribbean #bonaire #growglowcreate #bonaireisland #saltpyramids
#islandlife #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost #luxuryworldtravel #wanderlusttribe #caribbeansea
#womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy
Bon Bini to Bonaire! Along with Aruba and Curaça Bon Bini to Bonaire! Along with Aruba and Curaçao, it is 1 of 3 islands that make up the ABC Islands in the Lesser Antilles.
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The islands are all part of the Kingdom of Netherlands and have a distinct Dutch flair compared to other islands on the Caribbean map.
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Among its 18,000 inhabitants, Bonaire counts no less than 4 languages! Whilst Dutch is the official language, it is the colourful Papiamentu that the locals commonly use, along with glimpses of English and Spanish, as well as other languages associated with the many religious faiths found on the island.
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With colourful architecture, and unique culture that awaits you on each of the ABC islands, it’s a trip that you’ll forever cherish. And honestly, I’m VERY seriously thinking about moving into these colourful flamingo buildings🦩😍❤️
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Much more from Bonaire soon. Has anyone been? Or to the Caribbean? I’d love to know! 🇧🇶
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#thecaribbean #bonaire #growglowcreate #bonaireisland #pastelhouses
#islandlife #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost #luxuryworldtravel #wanderlusttribe #caribbeansea
#womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy
The history of the Caribbean is rich with adventur The history of the Caribbean is rich with adventurous tales, blended cultures, and natural diversity.
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The most important thing I wanted from this trip back in January was to connect deeply to this history and the beautiful souls who call the Caribbean home.
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From meeting artists in Barbados, to the honour of meeting Carib-Indians in a community in Dominica, I feel so thankful for the blessings of this trip that has enriched an even more powerful exploration of what it means to connect through our shared compassion and humanity.
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I’ll be posting them on my blog so I’m not restricted by words and images and post when they are up (I can’t believe it’s 10 years since I opened this space!).
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But before I go, I was really touched by an interview I watched recently between @brenebrown and @chasejarvis. In it, Brene calls for ‘a minstry of presence’ with people and how this and empathy are the most powerful gifts we can bring to the world.
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I haven’t been able to stop thinking about this because I truly believe that wherever we are today, even just as we move through this online landscape, and through our own communities in the safest way we can now, that arriving with our full presence and the deepest empathy we can bring is a form of medicine that is indescribably powerful.
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I met so many people on my travels who just long to tell their stories and talk to us. I feel so privileged to share these stories and that I have your presence with me as I share them 🇦🇬☀️
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#thecaribbean #antigua #antiguaandbarbuda
 #growglowcreate  #antiguaandbarbuda
 #islandlife #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost #luxuryworldtravel #wanderlusttribe #anguilla 
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I was just looking through some of my photos from I was just looking through some of my photos from the Caribbean and this capture of a Rainbow in Bonaire really spoke to my heart and soul.
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Rainbows are one of the most potent reminders of hope as they often appear when the sun follows a heavy rainfall. They serve to remind us that there is hope and light to follow even after dark times.
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Now, more than ever, we need hope. For if we are to sink into the uncertainty the world is facing right now, the most natural thing to do is to succumb to hopelessness and despair.
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But in the midst of this suffering and in times like this I know it can seem impossible to find hope.
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But ultimately hope helps us process the uncertain times to blossom into something beautiful. Even if it’s fleeting in our imagination.
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This year, the arrival of spring has reminded me of the powerful message of hope that the sacred rhythm of the universe brings.
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For the light begins to shine brightly once more, animals emerge once again, and plants and flowers ‘spring’ into bloom.
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And just as the bulbs of blooms come to break through the earth searching for the sunlight, I hope so dearly that this message of hope will give you a glowing golden light at the end of the tunnel to lean into.
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Because I am always determined, even when it feels impossible, to remain focused and hopeful on my quest to find the gold at the end of all 🌈s 💖🌈💖🌈💖🌈 (from Whimsy Wednesday April 2020)
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#thecaribbean #bonaire #rainbow #growglowcreate #luxurytravel #railtravel #goldenera #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost #luxuryworldtravel #wanderlusttribe #belmondpostcards #womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy
The Orthodox Alexander Nevsky Cathedral with its g The Orthodox Alexander Nevsky Cathedral with its golden domes dominates the city and is a symbol of Sofia. Started in 1882 it was finished in 1912 and named after the patron saint of the Russian Tsar Alexander II who was in power at the time.
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The peal of its 12 bells can be heard from 30km away and it is considered to be the largest operating Eastern Orthodox church in the Balkans. Inside you can see wonderful icons, huge chandeliers and the royal thrones.
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I thought this stunning spot was the perfect place to end my adventures in Sofia and now I’m going to get back to savouring every single second I have left here in the UAE 🇧🇬❤️
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#sofia #bulgaria #nationalgallery #theartofbelmond #София #growglowcreate #luxurytravel #neoclassical #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost  #luxuryworldtravel #wanderlusttribe #belmondpostcards #womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy #bulgariaofficial #sofiabulgaria #talentedbg #alexandernevsky
The prettiest front view of the breathtaking Alexa The prettiest front view of the breathtaking Alexander Nevsky Cathedral in Sofia. The other side of this stunning cathedral from this loveliest city will be the final for this series 🇧🇬❤️
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#sofia #bulgaria #nationalgallery #theartofbelmond #София #growglowcreate #luxurytravel #neoclassical #journeysofgirls #girlpowertravel #femmeborntotravel #journeysofgirls #damestravel #dametraveler #girlvsglobe #travelbabes #girlaroundtheworld #girlsthatwander #sheisnotlost #travelingwomen_ #sheisnotlost  #luxuryworldtravel #wanderlusttribe #belmondpostcards #womanwhoexplores #luxuryworldtravel #globelletravels #travellushes #seekingeverydaywhimsy #bulgariaofficial #sofiabulgaria #talentedbg #alexandernevsky
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