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    Maison Fioravante

    Navigating a Pelvic Mass and Chronic Health Issues in a Post-Roe USA

    Hi, there fellow humans, I’m Maison. My pronouns are she/her, I am a 26-year-old cisgender (identifying as the sex I was assigned at birth) woman and I have been living with multiple health conditions my entire life including but not limited to: severe widespread chronic pain, disk herniation, and lower back arthritis (as well as in some other places), PCOS, lymphatic issues, chronic wounds, and most importantly, it seems, a rare and still undiagnosed genetic overgrowth syndrome that affects my right leg and foot since birth. My overgrowth syndrome has also caused some overflow of my adipose tissue that composes my leg into my pelvis. On June 24, 2022, as most of us with uteruses know, the United States Supreme Court abolished federal protections for abortions that were previously protected under Roe v. Wade which came into effect almost 50 years ago on January 22, 1973. Since (formerly) being in place, not only cisgender women, and people of other gender identities with uteruses, have had the federal right and protection to get an abortion dependent on state laws for certain gestational periods of pregnancy. However, since it has now been overturned, abortion laws are up to each individual state. Prior to Roe v. Wade being recently dismantled, many states had “trigger” laws, which, according to Wikipedia’s definition, is a “nickname for a law that is unenforceable but may achieve enforceability if a key change in circumstances occurs.” Ever since I was a little girl, I have dreamed of becoming a mother, and hopefully having the ability someday to carry at least one of my own children someday if my health issues allow me. I felt comfortable until recently, to know that if goodness forbid, I would need to terminate my pregnancy for any reason (not that I would want to unless absolutely necessary), including for my health and well-being, my rights to that abortion were protected and basically guaranteed in my state of Pennsylvania. At the moment, abortion rights are still protected under Pennsylvania law, but our future as Pennsylvanians is hazy as we are expecting a new governor come election time, and each candidate has very different opinions on abortion. If we consider just Democratic and Republican candidates, our democratic candidate, Josh Shapiro, is pro-abortion rights, and our republican candidate, Doug Mastriano, has proven his views to be highly against upholding abortion rights for Pennsylvanians. Speaking more about my personal health, I had always thought for a long time that I would be able to not be considered a high-risk pregnancy, albeit I was diagnosed with PCOS, (a condition which causes cysts on the ovaries as well as hormonal issues and oftentimes infertility in those who have it), at age 14. I had experienced heavy and extremely painful menstruation since starting to menstruate around age 10. I remember being at a gynecologist appointment with my mother, maybe around the age of 16, and having a more in-depth discussion with my former OBGYN and my mother (who I am so incredibly close with to this day as she is not only my mother, but my best friend and full-time caretaker) asking if I would be able to have children someday and my doctor had replied that it was more than likely. However, as time passed and my other health issues (like my overgrowth syndrome that affects my leg continuing to grow as overgrowth syndromes typically do, etc.) continued to make themselves more well known, I started to gain an immense amount of doubt about my possibility of becoming a biological mother carrying my own child. Flash forward to now as a 26-year-old woman. I would have no problem when the time is right to have children with options such as surrogacy or adoption, but I still cling to the hope of being able to at least try and carry my own child. Those hopes were somewhat crushed when I heard that our Supreme Court had abolished federal protections for abortion by dismantling Roe v. Wade. The day that it happened, I had a major news network channel on television broadcasting a talk show, and it suddenly went to a breaking news segment: Roe v. Wade no longer existed in 2022 America. I grabbed my phone (as my boyfriend lives in England and I wanted to show him what was going on) to record the television while half-screaming expletives in disbelief. At that moment I knew things were going to change across the nation and not for the better for people with uteruses. Since the ruling happened, I’ve really begun to ponder my future, which has been accompanied by some tears that weren’t all based on the chronic pain I feel. I asked myself a lot of questions, played out scenarios in my head, and the list goes on. In truth, I cannot deny that this whole ordeal scares me for many reasons. It scares me for the countless people this decision will affect, especially minority communities (as minorities of different types are statistically and historically most likely to be affected) like people of color, those with disabilities and health issues, LGBTQ+ individuals. I identify as pansexual and queer (although in a “heterosexual presenting” relationship) and am disabled. As stated previously, ideally I would like to carry at least one of my own children. Whatever happens after that is left to some semblance of fate. But what happens if I get pregnant someday? If I do, goodness forbids I need to terminate my pregnancy for some reason and my state changes its course on abortion rights protocols. This is why voting is integral as well as protesting and speaking our minds to fight for our rights. We as Americans need to make sure to do our research before it is time to vote for new persons in office and make sure they will fight for our right to abortion and other basic human rights, we need to show our governing body that we will have voices heard. I am very much for the sentiment of “my body, my choice” as I couldn’t even imagine telling someone else what to do with their body and their health because of my personal views. People like me, and anyone really, should not be denied the choice when it comes to abortion, because abortion is truly not an easy choice to make regardless of the reasoning. I should be allowed to try and carry my own child, and if I need to terminate that pregnancy for my health and well-being, it should be thus. My fingers are crossed for the best, and you can be assured that I will be voting come November. On a final note, I would like to add this: people in America with uteruses, and those without who stand for abortion rights…I see you, and I stand with you. Together there isn’t anything we can’t do. We will prevail.

    Community Voices

    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

    Community Voices

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

    <p>What is the toughest conversation you’ve ever had about infertility?</p>
    Community Voices

    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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    Community Voices

    I did a thing #CheerMeOn

    <p>I did a thing <a class="tm-topic-link mighty-topic" title="Cheer Me On" href="/topic/cheermeon/" data-id="5cacee6c78919e00e432de21" data-name="Cheer Me On" aria-label="hashtag Cheer Me On">#CheerMeOn</a> </p>
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    Community Voices
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    Community Voices

    Join us in our new Mighty group… Infertility In Focus!

    <p>Join us in our new Mighty group… <a href="https://themighty.com/topic/infertility/?label=Infertility" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8c00553f33fe994f9b" data-name="Infertility" title="Infertility" target="_blank">Infertility</a> In Focus!</p>
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    Community Voices

    how the Duggar trial affected me so profoundly

    Part 1 of 2 The Duggar trial and the plethora of information to be found has proved to be an obsession for me. As a survivor of CSA and rape, I have read, watched and listened to anything and everything about the trial, verdict and the aftermath. Somehow I thought watching him be convicted and incarcerated would bring me some kind of “closure”. It didn’t. The person who abused me as a small child was technically a child as well.  I told a social worker at school when I was nine. He was not yet eighteen, but close, He was convicted as a minor and sent to a “boys home” for psychiatric treatment for a year or so. He was allowed to finish High school. He was gifted with a college education. He was able to marry a woman with small children and was later allowed to foster and adopt vulnerable children from foster care. He is a “pillar” of his business community and his so-called christian community. He is also a child molester. He violated my body and soul in terrible ways. I was a very small child. I was clearly and firmly prepubescent and he was not. He is a bad person who did terrible things and has been rewarded and given everything by society. I got nothing, except a lifetime of PTSD and #Infertility. “Justice” was served I guess. My suffering and the execution of my childhood mean nothing. The enormous economic, psychological, relational and physical toll I have been forced to endure and suffer are inconsequential and meaningless. I’m guess i’m just being dramatic and “jumping on the metoo bandwagon”as far as most are concerned. All the opportunities that were destroyed and stolen by him don’t matter and I should “stop playing the victim”.

    Society at large refuses to care or recognize the damage done by those who delight in the soul murder of children. They blame survivors, young and old, and demonize us for having any reaction except silence or capitulation to their feelings and their imagined narratives about us and our #Abuse. They demand we never show the negative repercussions we live with, every single day. They demand to know why we “let it happen” and didn’t go to police and subject ourselves and families to the injustice of the system. They call us “bad witnesses” and feel sorry for and make excuses for our violators. They demand we navigate society “normally” while never providing any real help to us. They blame us for failing to engage fully in life , for being unable to recognise or trust in opportunities presented, for becoming addicts or mentally ill and call us weak or lazy for it. They can’t even handle hearing the details of what was done to us but we are weak for being unable to be “normal” while we had to live it. Those horrific things Josh Duggar had on his computer are the things he did or wanted to do to small children. These things are the things real people do to real children, every day, and record it for posterity. Children who are abused have to live with all of it in their memories, brains and bodies, every single moment they continue to breath. This is reality. We don’t get to close our minds or ears to the horror, and neither should society.

    People who perpetrate, fund or enable #Abuse, like Josh Duggar and his community who enabled him, need to be held accountable. All of them. The lifelong treatment required for victims to thrive must be fully funded and made available. Society must truly denounce and stop enabling the rape of children by meeting out real justice and funding the real and proven (not some undereducated, unlicensed non #Trauma informed “spiritual counseling”) #Trauma therapy and lifelong support all sexual #Trauma survivors need and deserve. Perpetrators and the people who purchase, possess or even look at this material should receive long prison sentences and mandatory lifetime sex offender registration and treatment. They should earn their freedom only when their victims no longer suffer from negative repercussions and they have taken full and honest accountability for every single act and offense they committed against their victims and society.  They must be held to account every time a survivor of their willful and purposeful soul murder has a #MentalHealth setback or physical issue caused by their choices. They should NEVER be allowed to live with or adopt any children, ever. Maybe then we can stop them. Maybe then fewer children will be permanently scarred by this #Abuse. Maybe then children could be saved and maybe then, survivors w

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    Community Voices

    What they don't tell you in Sex-Ed..

    Part 1 of 2 Throughout my school years I attended many #sexedclasses they all covered different aspects however all had a very common theme in them which was “If you have #Sex without protection you WILL get pregnant” they went into great details about safe sex and how to practice it, they even spoke about options if you were to fall pregnant, and the help and support out there.I’m 25yrs old and I have carried those lessons around with me in my head for years but not because what I learned from them but because of what they were lacking, you see the word #Infertility never came up in those lessons, what it was or why it happened, never mind support for it. Instead I learned the word as I watched my older siblings battle against it as #Infertilitycame banging on their doors yet I was still absolutely clueless on the full meaning until it came banging on mine last year.Since then I’ve been on this journey that I was not prepared for, I’m in a rollercoaster that has sharp bends and big loops yet my seatbelt does not do up instead I’m having to hold on as tight as I can and try to grab supplies to fix my belt just as I’m collecting knowledge about this unknown subject a subject that I should of been taught on.What to do when you want to start a family yet your haunted with negatives every month?How to accurately track your ovulation days and how many days your cycles are?What to do if your not in a #Relationships but you want to become a Mummy? And the stigma around it?Information about sperm donorsInformation about IVFThe anger and grief you go through everyday and how it comes in waves and some of the waves can knock you down for what seems like weeks..How to deal with the overwhelming guilt you feel when you feel such pain when a family member or friend announces they are expectingConstant Dr appointments and the tests with the exact same responses “try to loose weight” “your time will come” “your still young you got time”Feeling such a type of broody that it actually hurtsMy life has become a draw full of pre-pregnancy supplants, ovulation tests, pregnancy tests, ovulation/period tracking tools, donor information, tables and charts and notes and Dr letters. I’m having to learn about all about this while living through it however I know exactly how to put a condom on and the different types of contraceptions there are and my rights if I wanted to terminated so why didn’t I know anything about #Infertility, how didn’t I know that #Infertility affects 84% of couples and half of women, how didn’t I know that there are so many different types of #Infertility ranging from just taking a long time to get pregnant to illnesses such as #PolycysticOvarySyndrome, how didn’t I know that the fact that I didn’t start my period till I was 18 could have something to do with my now issues to conceive, how didn’t I know that sometimes I won’t get a period but not because I’m pregnant but because my hormone levels can’t regulate, how didn’t I know that at just 25yrs old I would be experiencing isolating nightmare.I think that’s the main thing people forget to tell you about the trying to conceive journey is how #lonely it is, I struggle to connect with my peers because of how cut of this journey has made me, I feel like I’m in a prison where #Infertility are the bars while I’m looking through watching my friends and family live their lives, lives without negative tests, appointments, draw fulls of supplants and failed tests, baby clothes that stay in the closet for what may even be forever and there is nothing they or anyone can say to make this better.I wish they would of mentioned this all in sex ed, honestly that could of put people off the idea of reproducing all together because I wouldn’t wish this journey on anyone but at least I would of been prepared and that I wouldn’t have to be battling blind through this beast. #Infertility and trying to conceive needs to be spoken about more and it needs to be a conversation that is had at schools that

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