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    Kallmann syndrome is not the same as delayed puberty (or I am not a late bloomer).

    A common theme with rare disorders is the delay of diagnosis.

    I was seen as being a "late bloomer" when I had not started puberty by the age of 16. Even though I had two of the extra symptoms, lack of sense of smell and poor hearing, I had to wait until I was 23 before I got the correct diagnosis and was put on testosterone treatment.

    Late diagnosis and treatment can make such a different to fellow patients.

    Even with treatment patients do not experience normal puberty and would require extra treatment if fertility is desired.

    One issue patients can experience is that we are mixed up with "late puberty" patients. Some people assume that after treatment all is normal.

    Delayed puberty patients can experience normal puberty after a short course of treatment and will experience normal puberty and be fertile. Patients with Kallmann syndrome (male and female) do not experience normal puberty, will need life long hormone treatment and require specialist hormone treatment if they wish to be fertile.

    #testosterone #kallmann #puberty #Infertility #latebloomer


    Does anyone else feel broken or not whole?

    I feel broken and inferior to other women. I feel empty and as though I do not deserve to be a woman. Infertility I is getting harder and harder to cope with


    My Pituitary Story

    Part 1 of 2 The Pituitary Foundations Awareness Month – Live Well With Pituitary Conditions

    Patient Stories Submission – The Pituitary Magazine – 1177 Words

    Although my Pituitary journey officially began in 2008 I’m convinced it began long ago as a child. I can recognise the signs and symptoms. Especially when faced with stressful situations. Times when exercising at high levels of intensity in sporting activities.

    My ‘actual’ diagnosis came through an unconventional route, as it does for many. A tremor developed in my hand. Headaches, dizziness, sickness and being run down were daily features. Due to the tremors, I was referred to a neurologist. He gave me the choice between living with it and not knowing if there was anything serious, or having a brain scan. Stating there was a 25% chance of something showing. Am I glad I had that scan? YES! However, my follow-up was very brief and was pushed out of the door rather quickly, only being told a lesion had been found.

    Left waiting and wondering for 2 weeks was not helped by a letter that hit the doormat talking about Pituitary Surgery. Before being connected with an Endocrinologist. Pituitary Adenoma with Apoplexy was the diagnosis I got and needed. For someone who had just battled through training for and running in a London Marathon (completing it somehow) leading an active social life and working at an amazing job, this was a real shock.

    Numerous tests and scans were now a part of everyday living. The terms LH, FHS, progesterone, prolactin, and cortisol formed part of everyday language. At one point my prolactin levels rocketed from a secure 150-7500 in a matter of 3 months. A battle with medications and side effects ensued. Including three long years with no periods at all. Infertility also surfaced and my consultant urged me to grieve. I don’t think I will ever fully accept that. For me, that’s been the hardest part of the process.

    A few turbulent years were to follow. With the battle to find a treatment, I could tolerate. Needed to suppress the prolactin. The impact of a decline in neurological health, and the return of chronic fatigue/pain, I had suffered with at varying levels since a teenager. Largely down to Ehlers-Danlos.

    Another twist came as I tumbled down the road into pituitary insufficiency and then further into Addison’s. The diagnosis hit me hard. Fear set in and everyday normalities became mental battles. Shock packs and careful monitoring. Now having to manage both pituitary insufficiency and hyperprolactinemia. By this time I had lost not only my health but my career, sporting activities, hobbies and purpose in life.

    Added stress and struggles of my brother’s illness and subsequent death sent my mental health tumbling. Later that year a Psychotic Episode occurred to make matters more complex. Careful medication monitoring is key for me. Balancing hydrocortisone with antipsychotic medication is difficult. The withdrawal of Cabergoline (for prolactin) was essential.

    Some luck was to lead me down a different path. I fell into two things that kept me going. A Para-Swimming career ensued. Looking for a sporting hobby I joined a local swimming club. It supported my mental health and general well-being. After classification, things progressed fast: achieving National titles, swimming in International events, and breaking British Records. Even travelling to Nice to participate in the European Masters Games. Working with top coaches and training with elite athletes. All amazing experiences and unexpected.

    The Pituitary Foundation filled the other part of that void. I became an Official Campaigner. Initially supporting on social media, taking leaflets everywhere – hospitals, swimming pools, doctors! Telling anyone I could about the perils and challenges of all things Pituitary. The understanding of the hours put in made it easier to feel like I’d contributed. I could help when I felt well but pull back when not.

    Creating Time To Heal was a way I thought I could help others face the same battles as I did. Proud of my website and the message it aims to promote. At the centre of the website is my quirky and creative blog. The spelling and grammar may not be perfect but they all come from the heart. Being added to The Pituitary Foundations’ list of patient blogs gave me great satisfaction.

    In addition, I was asked to become an Active Essex Disability Ambassador for the Essex All Together programme. It aims to inspire, support, promote and deliver accessible exercise and sports provision for a broad range of LTHCs and Disabilities. My work has been celebrated with a page of my own on the Active Essex Website, through the Active Essex Sports Awards and within Ambassador Team Meetings.

    Both volunteer roles have

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    What is the toughest conversation you’ve ever had about infertility?

    Talking about infertility can be really challenging — the grief, the anger, the shock, the emotional lows — especially when faced with stigma or lack of awareness from others.

    If you can relate, how did you navigate that tough conversation?

    Feel free to share your story and experiences in the comments below 💌

    #Infertility #Endometriosis #OvarianCancer #Grief #PCOS #ChronicIllness #ChronicPain #RareDisease #CheckInWithMe #MentalHealth #Anxiety #Depression #selfcare #Trauma



    All my friends are having babies and a say congratulations and act happy then I cry as my heart breaks and I fall into my depression no not fall crash in to depression.i hate my body how could you do this to me. #Infertility

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    I did a thing #CheerMeOn

    Infertility depression has been wearing me out: I’m so tired of the monthly disappointments. But today, after another failed iui, I managed to pick myself up and get a workout in. I still feel fucking awful, and I’m not excited to do another round of any treatment, but I’m proud of digging myself out of the hole enough to do this. #Infertility #Depression #HypothyroidismUnderactiveThyroidDisease #Disability

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    Identity and chronic illnesses #ChronicPain #Identity

    #Fibromyalgia #Lupus #Infertility #COVID19 #Depression #PulmonaryHypertension

    I have not written for a while, the simple reason I had to take a break after writing my book. I landed a bestseller allowing people to step into my journey with fibromyalgia, depression and infertility. The struggle to find out who I am now that I cannot work, and the meaning of life continues to be a daily journey. In 2016 I stopped working and was in severe depression and in excruciating pain. In 2019 I was diagnosed with lupus. By that time, I was so tired of the fight I shrugged my shoulders and cried and went on with life.

    2020 I was in the first group of COVID sufferers. I almost lost my life and the subsequent chest infections and sepsis with 4 admissions in the last 2 years have taken a lot out of me. My lungs were scarred and I have borderline pulmonary hypertension. Accepting living with a limiting diagnosis and reduced mobility has made me quiet. Quiet because I got tired of explaining to anyone what they could not see. I did write the book, did I not!

    Many of us struggle in finding who we are again as the pain rips through our bodies. It is a daily decision. Our responsibilities as husbands, wives, siblings and colleagues weigh heavily against the pain. We diet, we walk, we look for solutions and you find no size fits all. Who you are is your character, it is not your job title and through therapy, we revisited my values.

    As a fibromyalgia and sufferer who suppressed a lot of pain, I learnt to have boundaries and put myself first. I learnt to be self-full (coined by Iyanla Vanzant). It has been a surprise to many. I am lonely, something I had not counted on. My friends have moved on with their lives and even when you get an invite you have to choose between the pain the next day and disappointing people.

    The next big decision I made was not to have children. With the pain, depression and inability to have a child, I chose to not adopt or go for surrogacy. The tradition, of course, was busy challenging me “you know you have to have a child to work for”. My question was, if my pain is 15 on the richter scale and I take opiates, how do you deal with a 2 year old? The grieving of motherhood was difficult and continues to be a companion who turns up at inopportune times triggering a flare.

    I reinvented myself to be a best selling author and I am writing my second book on grief. I have had to fight against the norm of how people did things. Social media did not help the insecurity of not being good enough. I found a lot of people do not understand invisible illnesses and the safeguards we have to ensure to live. It took me 5 years to write my book and I wrote it so that someone who looked like me, a cross-cultural British Kenyan woman would have a reference point. Perhaps I continue to hope that professionals will read the book and understand how we present with pain. The language we use when explaining pain needs to be understood. I have been able to help people in Eastern Africa and America who have struggled with understanding the multi-system diagnosis. Yet I still don't feel I am good enough.

    I have found my passion for creating awareness on mental health and infertility which are a taboo subject in the African community has been worth it. I evolved and became more compassionate and learnt to listen. I now use a walker to help me walk and sometimes I cry because I am an old woman with a young spirit. Then I am reminded who I am and how I stand with the weakest is most important. I think one of the greatest challenges is not being financially independent and is soul destroying, but that is a story for another day.

    Hang in there, the sky may be grey the sunshine will turn up when you least expect it.

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    #Depression taking over again #CheckInWithMe

    I recently came back from Hawaii. I know, sounds like I should be completely relaxed. I’m not. I’m struggling greatly. Vacations don’t mean what they used to. I spent my time navigating people and trying to be mindful of covid. I felt the impact of my recently job termination in our trip budget (this trip was already paid beforehand). The weight of infertility burdened me as I avoided local coffee and alcohol with the hopes it would benefit me during the two week wait while we were away. While I did enjoy my time, it honestly was just a reminder of how much I needed an escape from my life, and how I still couldn’t REALLY escape. There’s so much weighing me down and I feel so empty. Honestly, I wish I didn’t come back. I wish I could’ve died in the Pacific Ocean, and maybe had a little peace for the first time in a very long time. I’m so tired. Tired of everything that comes with mental health issues, thyroid disease, infertility; my race, my gender, My socioeconomic status. I just feel so perpetually hopeless. It feels like everything I’m trying isn’t working. Even expensive vacations aren’t helping the way they “should”. I feel awful complaining about a trip to Hawaii, something many can only dream about, but it doesn’t change how I feel inside. I just feel so empty. My life is so empty. My soul is craving happiness I feel like I will never experience. Im tired of just existing. I want to feel alive. #Depression #PTSD #Anxiety #HypothyroidismUnderactiveThyroidDisease