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    Community Voices

    I’m 9 weeks post-op from excision surgery of endometriosis and an appendectomy. The chronic pelvic pain has returned. I also have a post-op ovarian cyst that’s just adding to the pain. I’m so tired of living like this. I can’t handle it anymore. I don’t know how to cope with it. I can’t see the pelvic floor physical therapist until late December. What can I do? How can I survive this?

    2 people are talking about this
    Community Voices

    One Year Opioid Free!!!!!🥳💯🤘💥
    #Recovery #ChronicPain

    <p>One Year Opioid Free!!!!!🥳💯🤘💥<br><a class="tm-topic-link ugc-topic" title="Recovery" href="/topic/recovery/" data-id="5b23ceb100553f33fe99b555" data-name="Recovery" aria-label="hashtag Recovery">#Recovery</a>  <a class="tm-topic-link mighty-topic" title="Chronic Pain" href="/topic/chronic-pain/" data-id="5b23ce6f00553f33fe98ff5b" data-name="Chronic Pain" aria-label="hashtag Chronic Pain">#ChronicPain</a> </p>
    29 people are talking about this
    Community Voices

    When you know something is wrong but no one will listen

    I have been in a horrible #InterstitialCystitis flare since mid March. I had a hydrodistension and cystoscope two weeks ago. Then got an infection. I am still having horrible #Pelvicpain and mid flank pain on the left side. I’m hardly eating. I’m dropping weight. They also found a small angiomyolipoma in my kidney but urology says it “was an incidental finding”. I saw my pain management doctor and he is he only one who has listened to me. He was shocked at how I was dismissed by my urology and my gynecologist. He has been so helpful. He also feels like something else is wrong but doesn’t know who. We are trying a pelvic nerve block in two weeks. I know something is wrong but I don’t know what. I have so much pain and other symptoms that are different than a normal flare. I also have #IBS and #Endometriosis and #Fibromyalgia .
    I don’t even know what doctor to try to reach out to to try to solve this puzzel.

    9 people are talking about this
    Community Voices

    Weird comforts during flares?

    Anyone else have weird things they find comforting during flares? I am in a horrible #InterstitialCystitis flare right now awaiting surgery on Friday. I love watching old horror movies when I’m in flares. I’m taking like 1940s horror movies. I have done this for a long time. I also always buy a new pair of pjs to change into when I get home from surgery. #flare #InterstitialCystitis #Pelvicpain

    3 people are talking about this
    Community Voices

    Question for the Ladies: Pain from internal ultrasound still present 3 days later?

    Three days ago I had to have an internal ultrasound to check for structural issues with my uterus and ovaries. My doc determined that I have pelvic floor dysfunction related to my EDS causing a variety of symptoms, esp. frequent pelvic pain. But I am still having intense pain from the ultrasound even after taking my pain meds and using a heating pad. Have any other women experienced this same or a similar problem? How did you deal with it? #WomensHealth #Pain   #PainManagement #PelvicFloorDysfunction   #Pelvicpain #EhlersDanlosSyndrome   #EDSers   #HypermobileTypeEDS   #RareDisease

    16 people are talking about this
    Community Voices

    Cozy Sunday: Managing comfort with Interstitial Cystitis

    <p>Cozy Sunday: Managing comfort with <a href=" Cystitis" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8d00553f33fe9951f2" data-name="Interstitial Cystitis" title="Interstitial Cystitis" target="_blank">Interstitial Cystitis</a></p>
    4 people are talking about this
    Community Voices
    Community Voices

    Navigating Work & Illness

    How do I give what I can to my job and my health? It is a very difficult balance and not having a supportive supervisor makes it that much more complex. Someone who thinks every ailment has a fix/solution. Always being told "Well there must be something they can do." Or you have an emergency and she wants to know why it didn't happen sooner to give her notice. Sometimes I wish I was the rude unprofessional type to say something like maybe try looking up "chronic" and "emergency" in the dictionary? But I am not and I let her get to me and sit and cry myself into worse pain and totally debilitating anxiety on the days I am already doing so poorly I am not up to work. The stress of calling out is that bad. I have a meeting with the "big boss" scheduled, but given how long my supervisor has been there I am wondering if I am just going to have accept letting go of the job I love. Fighting everything including to keep my job just seems like too much. #ChronicIllness #ChronicPain #Work #Pelvicpain

    10 people are talking about this
    Community Voices

    A Letter to a Pelvic Pain "Specialist"

    Dear Pelvic Pain "Specialist" ,

    I am writing to let you know that while I may be just another face in a sea of patients to you; you are not just some doctor in a sea of them to me. While a world of doctors there may be, given all my "issues", you're special. So special you thought your MD gave you the right to violate me, take all my control, ignore my consent and assault me and then go on about your life as if nothing happened. Something did happen. Something that I want to scream from the rooftops until you stop seeing a sea of patients and see me and remember. It was not just another day just another procedure. It wasn't a mistake. It isn't "sorry you feel that way" And it sure as hell wasn't "do no harm". Harm was done and has remained marked down in my chart as routine. How long can you routinely do harm before someone steps up and stops you? How long before I get to quit hearing what an amazing doctor you are and hear the voices of those like me that have you seared in their brain not for your amazing help, but tremendous harm. How long until I get a letter "to the patient I assaulted" . Yea I bet I'll be waiting a long ass time.

    PTSD "Specialist" (thanks to you!)

    #PTSD #Trauma #pudendalnerveblocks #Pelvicpain #assault #SexualAssault #ChronicPain #Pelvicpain #MedicalTrauma #Endometriosis #Consent #emdr

    4 people are talking about this