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    Spreading awareness about endometriosis

    March is Endometriosis Awareness month. On this week’s podcast episode, I speak with Alyssa Chavez. She shares her story about her struggles with endometriosis, infertility, and healing.

    1 in 10 women struggle with endometriosis. If you are someone that struggles with endo or infertility then you don’t want to miss this episode. Listen to this episode to learn more about endometriosis and to help spread awareness.

    #Endometriosis #endometriosisawarenessmonths #ChronicIllness #chronicillnessawareness

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    Obstetrician St Leonards |

    Finding a private hospital for obstetricians. is a private hospital for obstetricians named North Shore Private Hospital in St Leonards, North Sydney. Obstetrics services offered - infertility and pre-conception management, IVF and assisted-reproductive pregnancies, multiple pregnancies, e.t.c. Explore our site to know more.


    The hidden side of Kallmann syndrome / hypogonadotropic hypogonadism - missing out on puberty and adolesence.

    Kallmann syndrome (KS) is a form of hypogonadotropic hypogonadism (HH). It affects puberty and fertility.

    People with KS / HH do not undergo normal puberty and will normally be infertile.

    Hormone replacement therapy can help with some of the physical symptoms and there is even specialist treatments available to help induce spells of fertility.

    It is the pyschological aspects of the condition that concern me more at the moment. I talk to and meet many fellow patients and it is the perhaps the pyschological aspects that cause the most problems to fellow patients regardless of their age of diagnosis or treatment.

    As with most rare disorders it is difficult to discribe to others what it is like to have the condition. Puberty and adolescence are such cornerstones in the development of the individual to miss out on them must leave lasting effects I think.

    Having late puberty, being a "late bloomer" can be bad enough. However to be left behind totally is even worse. To be told to wait and see when you are a teenager as your friends develop physically and emotionally around you is not easy.

    In my own situation I had a normal enough childhood, nothing seemed amiss, apart from my poor hearing and lack of sense of smell. At the time nobody linked this to my lack of puberty. If they had, I may have been diagnosed earlier than 23 years of age.

    Socially i think I was a normal enough child but as a teenager I became more and more socially isolated. Through my own fault, I see now. I was invited to events with my teenage friends but as I grew older I felt more and more distanced from them. I began to turn down invitations because I felt so out of place. Eventually the invitations stopped totally.

    Since I did not go through puberty, I felt physcially out of place as well as socially out of place. The doctors just said "wait and see", so I did. This was just before the internet age. I knew I was missing out on relationships and indeed even sexual relationships while a teenager or later at University. I just assumed it would all catch up eventually.

    I concentrated on other things, I was not un happy as a young adult but perhaps I modified my personality and behaviour to make up for feeeling out of step of my age group. I did not learn the social skills or notice the signs of potential relationships. I developed my own traits to appear normal enough to function, trying to forget other things in life.

    I was not diagnosed until I was 23 and it was not until I was about 25 that my hormone levels (testosterone) reached that of a normal male. What happened next is another story that i would be happy to share another time.

    #kallmann #puberty #hypogonadism #BodyImage #Infertility #Sex

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    My Story

    Hi my name is Kara Simone and I wanted to share my story. I got diagnosed at 4 years old with Agenesis of the Corpus Callosum after having a seizure and subsequently getting an MRI. I got diagnosed with ADHD in middle school and Generalized Anxiety Disorder in my early twenties.

    If you don’t know what Agenesis of the Corpus Callosum (ACC) is already, it is complete or partial absence of the part of the brain that connects the two hemispheres. In some cases, ACC can be accompanied with other brain anomalies. It ranges in severity. I have Partial ACC and my case is mild, it can affect people in different ways.

    Also, I was diagnosed with Mosaic Turner Syndrome at 16. A somewhat traumatic appointment with an endocrinologist and a geneticist around that time revealed problems with my fertility. I’m fine with it now though, even though I have my moments. Other than anxiety, ADHD, and Thyroid problems, my health is alright. I had my first bone density test in 2020, that’s an important to do for those of us with TS considering lack of some hormones can lead to bone issues.

    Thank you for reading. I wanted to share my story because dealing with things that most effect my mental health and fertility has a huge impact on me and I want people to know they are worthy and not alone. #MentalHealth #Anxiety #AgenesisOfTheCorpusCallosum #TurnerSyndrome #Infertility #ADHD #GeneralizedAnxietyDisorder

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    Losing Joanna

    Part 1 of 2 I slit the edges of the package open without thinking, carelessly sorting mail and hanging up my child’s backpack at the same time. In the box was the pink fuzzy monogrammed blanket I had ordered from Pottery Barn the week before for my friend’s baby naming ceremony. Monogramed in loopy letters was the name: Joanna. It was the same name my patient had given the baby who had died in their arms that week after a traumatic birth. As I tried to quell sharp pricks of tears, I went into the other room to sit on my rocking chair, instinctively needing the repetitive soothing motion. I wanted to cuddle up in the soft blanket, holding it to my cheek, but recoiled from the name, once so musical, now a reminder of how cruel life can be.

    I had seen the couple in treatment for a few years, as they underwent countless IVF and other procedures in an attempt to get pregnant. I accompanied them as they rode out vertiginous cycles of hope and despair: Would the acupuncture be timed well for her cycle? Would the new procedure take? Could they survive as a couple as the hormones she injected brought on bouts of emotional chaos? Would this be the time she became pregnant, or would it be another bitter disappointment? It felt a bit like spelunking, groping in the dark through a cavernous unknown. Few people understand how difficult #Infertility is, not just emotionally but bodily. They were committed to one another, but their bond was daily undermined by infertility. The therapy felt high stakes: either we’d together find the light or become permanently lost in the dark.

    Six months into her pregnancy, they declared they’d made it through.

    “I think we are cured,” she laughed, as we had our last session.

    After years of treatment, of arguments, repairs, bursts of fragile hope ending in sadness, there was a whole new depth to their relationship. I felt invested in their pregnancy project, and immense joy for them when they passed the 3-month mark and made the move from the infertility clinic to a regular OB-Gyn. In that moment, I felt less like a therapist than a guide, reminding them that they were in it together, that turning toward one another when things were hardest was the only way through.

    I saw a new side to them as her healthy pregnancy progressed. They had always sat in separate chairs in our sessions, but then they moved to the couch, his hand stoking her back occasionally as we spoke. There was a softness between them. I agreed that we had come to the end of our work together, an intense collaboration that felt satisfying and complete. They promised to send a baby picture when she arrived.

    A few months later, the phone rang. It was his voice, frantic and shrill.

    “She can’t get out of bed,” he kept repeating. “I can’t get her to move.”

    I sat down heavily, my body tense. “What happened?” I asked him.

    He paused for a long moment. “We lost the baby. We lost her—her name is-was-is-Joanna.” His voice was raspy and dazed.

    I tasted metal in my mouth. “What can I do?”

    “Can you come? I mean, here? She really can’t get out of bed.”

    I arrived at their brownstone building and went up the stairs, acutely aware of the baby strollers and child-sized rainboots outside apartments as I climbed. I entered and felt a strange unease. I’d rarely spoken to them on the phone, never mind visited their home. Therapists don’t see patients in their homes, but there they were, sitting on the floor surrounded by the brutal reminders of the baby they never go to know. I sat down beside them.

    “We don’t know what to do with all this,” the husband motioned to the piles of impossibly small onesies and newborn diapers stacked on the chairs. “We can’t even open that door,” motioning to the baby’s nursery. I tried to move as little as possible as he spoke, afraid that the wrong gesture might at any moment shatter their fragile equilibrium.

    “And we can’t seem to go outside,” the husband said. “How is it that people are just acting normal? There’s this disconnect—it feels like this should be on the front page of the newspaper, that the world should be as altered as we are. But they are all the same. Life is just going on. Only we’re not the same.” Their knees touched, sitting next to each other on the floor. “What do we do now?”

    I searched for an answer but had none. We sat in a weighty silence.

    Eleven years have passed since Joanna died. I still wince when I hear that name called on the playground, or by a teacher in my daughter’s classroom. That name, Joanna, is for me buried, along with the tiny body who never heard her name.

    Recently the wife called me out of the bl


    Losing Joanna

    Part 2 of 2 ue, asking to have a session, this time by herself. She caught me up on their life—a gorgeous 7-year-old boy, a move to the suburbs, new work for them both.

    “Joanna, though, she’s here. She will always be here,” she choked out. I swallowed the lump in my throat.

    “I will never forget coming to your apartment the week that she died,” I said.

    “I forgot that you are there,” she murmured. “I think that’s why I wanted to see you. I wanted to talk to someone else who knew us as parents of two children.”

    I sat quietly while she cried.

    “I don’t know why her eleven-year anniversary shook me so much,” she said, still tearful.

    “I hate saying this, but it’s true.” She looked down at her lap, picking at some loose threads on her dress. “Without her there would have been no Jonathan. And that I just can’t imagine. He is just such a delight in every way. I know every mom says this, but it really is true. I don’t believe in God, but if did it would be because he came to us. But I hate saying that about Joanna, it feels like a choice between them.”

    “Does it have to be?”

    “What do you mean?” She leaned forward.

    I thought about the ghost of Joanna, how many times I’ve thought of that powerful afternoon I spent on their floor, and how I too carry her brief presence in the world with me. The last trip the couple had taken before her pregnancy foreclosed travel had been to London. She had been particularly taken with the symmetrical rows of birches outside the Tate Museum. They had imagined Joanna swinging in the birch trees, playing and laughing as she ran from tree to tree. I winced as I remembered how I had encouraged them to picture their daughter, to give themselves permission to dream about holding and playing with her despite the ordeal they had experienced getting there. They had found the Robert Frost poem “Birches,” which I happened to already love.

    Sitting with her, the poem came back to me.

    “Do you remember how we imagined Joanna swinging in the birch trees?”

    “I do,” she smiled, wiping her tears. “I still love Birch trees.”

    “You know there’s something I never said back then.” I studied her face and swallowed. “Those trees in the poem, the reason they were weighed down was because they were covered with ice. Not because of the boy swinging on them. They bent almost to the ground but didn’t break.”

    “What?” she looked startled.

    “The boy in the poem, he did swing between the birches the way we imagined Joanna, but their branches stayed bowed down because of the ice.”

    She blinked.

    “I totally forgot that part,” her voice trembled. “Joanna was born in an ice storm.”

    “I remember,” I said.

    “That image of swinging freely and the birches being weighed down with ice-they are both in that poem…”

    “I sometimes don’t know the boundary between grief and love for Joanna…Are you saying that I can get to the place where I can hold both children?” Joanna’s absence felt palpably present between us.

    My heart pounded as I responded. “No, I’m saying you already do.”

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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

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    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

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