Interstitial Cystitis

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Interstitial Cystitis
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    Community Voices


    Community Voices
    Community Voices

    So much pain

    I’m in a horrible interstitial cystitis (some call it painful bladder syndrome) flare up right now. Day 3 of this horrible horrible pain. My bladder is burning. It hurts to pee. It hurts to not pee. I can feel my bladder and pelvic floor spasming. It’s giving me a stomach ache and a headache. I’m afraid to eat or drink anything besides baking soda water. I’ve been taking azo as often as allowed. All I did was take 3 single sips of a drink my friend for a few days ago and I guess that was enough to do this. I haven’t had a flare up in years. I was supposed to enjoy the 4 days I had off with my boyfriend doing all the fun activities we planned and yet all I did was sleep the days away out of pain! No one understands how mad this makes me, how unfair this is! I finally get to go out with my girlfriends and this is what happens to me. This is why I never want to do anything fun. It’s never worth it in the end. Monday Tuesday and Wednesday spent in severe pain, spent sleeping. I have one day off before I go back to work for two nights. How am I going to survive work when I can’t even handle staying awake at home? I’ve maxed out on call outs this year so I’m screwed. I’m so sick of being sick. When does this end? 😭 #InterstitialCystitis #ChronicPain #Depression #alone #LymeDisease

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    Community Voices

    Running Through the Flames (poem)

    <p>Running Through the Flames (poem)</p>
    Community Voices

    Reminding myself how strong I am 💚

    <p>Reminding myself how strong I am 💚</p>
    15 people are talking about this
    Community Voices

    Reminding myself how strong my body is

    <p>Reminding myself how strong my body is</p>
    Community Voices

    I’m starting to think I might have Gastroparesis.

    Ever since I was a baby, I’ve struggled with stomach issues. I’ve never been able to vomit normally - I literally projectile vomit EVERY time. I’ve been told it looks like I’m a cartoon when I do it. I end up with EXTREME stomach and throat pain. And over the years, I’ve noticed that I can sometimes not have eaten for 6+ hours but I’m still bringing up an excessive amount of what appears to be undigested food.

    This past weekend, I managed to catch Norovirus - the “winter” vomiting bug. Between the hours of 3:30am and 8:30am on Sunday morning, I was curled up on the bathroom floor sobbing, unable to stop myself from bringing stuff up. But I hadn’t eaten since 6:30pm that evening. So, it had been around NINE hours WITHOUT consuming anything other than water.

    TRIGGER WARNING - this part might be a bit gross…

    When I started vomiting, I could SEE what I’d eaten for dinner. Very clearly undigested cucumber, cherry tomatoes, and stuff like that. I managed to fill a 2 LITRE bowl up twice in the space of about 30-60mimutes, then I continued to bring up insane amounts of bile (BRIGHT greenish yellow) for HOURS afterwards. This can’t be normal, surely? I thought the stomach was supposed to be empty after 4-6hours? But to have a FULL stomach after NINE hours? Jesus. I haven’t felt so ill in all my life.

    From all the retching and vomiting, I’ve torn the muscles in my sides and my abdomen - it’s really hard to laugh and cough without crying. My fever was originally 39.8°C but is now down to 37.9°. I’m still achy, though. I imagine it’ll be a few more days before I’m back to my version of ‘normal’.

    I’ve had SO many investigations for acid reflux, stomach aches and GERD in the past. All we ever found was the GERD, a hiatal hernia and VERY inflamed stomach linings. Surely gastroparesis would’ve been found before now…? How do I go about having this looked into?

    Thank you all in advance, guys. And I’m sorry for the graphic description of my puke. 😬

    #chronicillnesswarrior #ChronicPain #GERD #IBS #NAFLD #POTS #EDS #Dysautonomia #Norovirus #TMI #SicknessBug #InterstitialCystitis #Diabetes #Migraines

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    Community Voices

    Guess who managed to break her foot by WALKING!

    <p>Guess who managed to break her foot by WALKING!</p>
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    Monika Sudakov

    Men, Ask Your Female Partners About Their Reproductive Health

    Note: Not all cisgender heterosexual relationships are reflected in this story, and not all individuals with uteri are women. “What is endometriosis? I’ve never heard of it.” I stood in awe as I heard these words come out of the mouth of a person I know fairly well. This gentleman is in his 30s, well-educated, married, and has two children. The conversation began with my disclosing that I write for The Mighty and that lately, I’ve written a lot about endometriosis. Maybe I’m naive and obviously, I’m well aware of the lack of research and knowledge surrounding endometriosis, but I just assumed that most people have at least heard of the term even if all they know about it is that it is a condition affecting individuals with a uterus. Clearly, I was mistaken. This got me wondering, “How many men don’t know about the reproductive health issues those born and identifying as female deal with, and what are the ramifications of this?” After a quick Google search and cross-referencing numerous articles, what became clear to me is that this is a globally recognized issue that influences everything from female mortality due to childbirth to intimate partner violence. While religious and cultural views do exert powerful influences upon views regarding the importance of women’s reproductive health, there is a general consensus that lack of education, media bias, and social stigma are among the leading factors as to why men appear to have such restrictive knowledge about the way women’s bodies work. So what does all of this mean when it comes to the partnership between two individuals? I’d argue that it is a fundamental issue that could not only revolutionize the power dynamics between two people in a committed relationship, but it might also be one of the greatest keys to establishing deeper levels of communication and intimacy between partners, the lack which often lands people on the couch of a couples therapist’s office. Furthermore, in a society where women’s reproductive healthcare is often treated with suspicion or neglected, having an ally who is both knowledgeable and engaged in their partner’s reproductive health could bridge the gap so those identifying as female can obtain a prompt and attentive diagnosis and treatment of conditions like endometriosis from medical practitioners. What should men be asking about their female-identifying partner’s reproductive health? Here’s a list of six key questions to consider. 1. Basic anatomy. Let’s start with the fundamentals. Do you know the structural anatomy of a woman’s reproductive organs? Do you understand how they work and why? Do you have a rudimentary idea of how a woman experiences orgasm or sexual pleasure? Let’s be honest, sex is an important part of a relationship and is one of the most frequent sources of strife between couples. A man who is armed with the foundational principles is a man who is a step ahead of the game where cultivating a satisfying sex life is concerned. 2. Are you familiar with your partner’s menstrual cycle and how they experience it? Do they have severe PMS? Do they undergo an increase in their libido? A decrease? Are their periods heavy? Do they typically last three days, four days, or five days? What other symptoms do they experience? Are their periods irregular? All of this information is invaluable in not only family planning, but any concerns or irregularities may indicate an issue that might require medical attention. I get it, periods are uncomfortable to talk about. But your partner spends a significant percentage of their life experiencing their menstrual cycle. Pretending that it doesn’t exist or ignoring it is rejecting an integral pervasive part of their life. 3. Does your partner experience any pain or discomfort during sex? This one strikes a particularly sensitive chord because if the answer is “yes,” something needs to be done about it. I want to state one thing loud and clear — if there is a medical or emotional reason a person is avoiding sex, this is in no way a rejection of you. I say this from personal experience. While my sexual dysfunction was both structural (brought on by endometriosis) and psychological (a by-product of my sexual abuse), neither of these had anything to do with my husband’s prowess as a lover, attractiveness, or my love for him. But it most certainly affected him. We avoided this conversation because it was so uncomfortable. But once we finally engaged in an open and honest dialogue about it, we could begin to figure out what the causes of my sexual discomfort were and what we could both do as a team to address it. It’s not a magical cure and it can involve some tears and possible medical interventions like pelvic floor therapy, but it’s absolutely essential to the health of a couple’s relationship. 4. Does your partner have a family history of any kind of reproductive health condition? If they do, what are those diseases, and what are symptoms that both of you might be keeping an eye on? Examples include endometriosis, fibroids, cancer, interstitial cystitis, and polycystic ovary syndrome. Thankfully with the internet, this information is readily at our fingertips. There are even websites and blogs uniquely designed to educate men on their partner’s reproductive health and chronic illnesses like Worryhead, which has printables, infographics, and even an endometriosis e-book. 5. Do you want to have children? This might be a question that you should have asked way before committing to a long-term relationship, but if the answer is yes, any underlying reproductive health issues might make conceiving a challenge. If you do experience trouble conceiving is your partner interested in pursuing fertility treatments? Surrogacy? Adoption? Laying these concerns out prior to having to make these decisions won’t eliminate the grief that inevitably comes with having to come to terms with it, but it does help to have a game plan ahead of time that both of you have agreed upon. 6. Ask your partner if there are any questions they have about your reproductive health. I know, your brain just did a double take. You thought this was all about men learning about their partner’s reproductive health. Yes. That’s true. But the conversation must go both ways. If you are withholding information about things that might be affecting you, or if your partner fails to acknowledge them, that impacts both of you. You deserve to have your health and wellness taken into consideration as part of the system that exists between the two of you. Your lives are intertwined in a dynamic interconnection and that includes your bodies and minds. Don’t allow fear or shame to stop you from telling your loved one about something that might be concerning you. You owe it to your partnership and more importantly to yourSELF. What I’m suggesting above involves a radical act of self and other discovery. It represents the rejection of the status quo where matters of discussion regarding anything having to do with reproductive health are concerned. And ultimately it requires the kind of intimate emotional engagement that might feel terrifying and completely foreign. We are not socialized to be this vulnerable in our relationships, and it is my personal belief, and one that my therapist would agree has validity, that all of us would benefit from cultivating the ability to communicate on this kind of level.

    Community Voices

    Advice for a Mothers Day Fail

    Well we all at one time in our lives have probably questioned if we have been too sensitive. Today Mother’s Day my Daughter had to work. I have only the one. I knew she had to work and had no issue with that.

    Problem was today was a day like any other day. Nothing special no cards no flowers nothing but what really upset me was she didn’t call until 7pm. By then I became petty Betty. I was up all day and for those with Chronic Illness etc we know there are days we don’t know when we might have been up all night or 2-3 nights like it happens to me so daytime sleeping happens.

    So I didn’t take the call I felt you could take 2 mins from your day or even text me Happy Mothers Day. This has happened before like my Bday etc. where the day comes and nothing. Makes me feel the same like nothing. My husband will say well you were sleeping all day no I was up all day. He actually spent the day helping his father. He also make comments like I’m not his mother. I really need to know if I’m over reacting. There are a lot of factors like chronic pain, chronic stress, ptsd etc.
    I am hurt and sad. When your disabled and you struggle with not being able to do so much it just adds to the pain of it all. ##fibromyalgia #fibrowarrior
    #fibrofighter #sickofbeingsick
    #chroniclymediseaseawareness #lymesucks #lymewarrior #lyme
    #invisibleillness #spoonielife #chronicpainsucks #epsteinbarr
    #ra #rheumatoidarthritis #ic/BPS #interstitialcystitis #ptsd #sciatica #pituitarytumor #nervedamage #ankylosingspondylitis #lymedisease #lymewarrior #chronicpain #chronicpainsufferer #ddd #migraines

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