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  1. #1
    ICN Member Antonia11's Avatar
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    After 21 years of IC, Finally joining up!

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    Hello, fellow IC sufferers!

    I was Dxed at 19, after developing symptoms my Freshman year of college (cystoscopy; definitive IC). I was tried on meds, but few worked and I am very med sensitive. I did notice that after a few years (the cystoscopy REALLY damaged me and led to a 90% increase in what was originally just a slightly annoying amount of symptoms) much of my pain was gone. Paxil cleared it up the rest of the way, but led to worse problems and I went off of that. Basically, I just exercised a lot (brief interruption for a nerve injury in my face, lots of meds, total disaster), drank only water, and suffered not much pain aside from the 2 UTIs. This was after docs had DXed me with fibro, central sensitization, trigeminal neuralgia, IBS, the whole gamut of "pain syndromes" and I was told I would never lead a normal life again. WRONG!! I even passed a brutal 7 hour belt test in a martial art that involved me getting hit. A lot.

    Long story short, my bladder flared after a weird chiropractic adjustment to my hip socket in July 2013, but it wasn't an infection. I had no idea why I would have a sudden IC flare of THAT magnitude (which grew to involve general pelvic pain as well, then massive spasms a few months later and inability to walk). It turned out that I had suffered a torn labrum in my right hip, which also had very minor FAI (femoroacetabular impingement), the pain referred straight to the bladder/groin (http://www.hss.edu/hip-pain-center-f...p#.U2GJOuZdWx4). My muscles spasmed to try and protect the joint, I tried to return to martial arts as advised by previously mentioned chiro, and promptly suffered a sports hernia (10 muscles tears at the pelvic attachment points. Ouch, right?). The resulting spasms and lack of DX or properly read MRI, hey I was a woman with diffuse pelvic pain despite exact dates of injury and got the "Dr. Drew treatment" from local docs, led to the worst bladder pain I have ever experienced in my life. EVER. The rectus abdominis muscles were trying to work, but they run right over the bladder, the pelvic floor muscles were compensating and dealing with neighboring adductors being torn, and everything went haywire. They spasmed until I was thrown back into the pain, my nervous system going nuts so that even my bed hurt my body, and was tossed unceremoniously to pelvic floor therapists, who claimed my problems were anger, anxiety (duh!) and pelvic floor dysfunction--with extremely sudden onset within 2 minutes of doing groundfighting with a 200 lb man.

    That wasn't a long story short! Terribly sorry. The long story short is that I finally got a proper read on an MRI, said adios to local docs and found a hip specialist out of state who specializes in the link between hip pathologies and pelvic pain--and also works with a surgeon who repairs sports hernias. I had surgery on 4/3 and am on the road to recovery--hopefully. It's hard to tell when muscles will heal when they've had to be sewn back onto the pubic bone! But I'm trying, and throwing the pain I have into the place in my brain previously assigned to shelve my bladder for "project ignore and tune out".

    The interesting link here is that I did have a VERY minor form of FAI (see link above; so minor it took this specialist to notice, local docs missed it entirely). My first bladder incidence of pain happened after going to college and starting to walk nonstop, which did also irritate my hip and hamstring tendon. My 2nd, which involved muscle spasms in the back, followed childbirth and 2 years of heavy duty belly dancing classes (imagine that hip irritation). The 3rd involved a trauma induced labral tear (the minor FAI likely had been irritating the labrum in the previous cases, though it apparently didn't cause the tear). I'm starting to wonder if my IC was caused, for 21 years, by an untreated hip issue? The only frequency I have (and I was never much of a frequency IC sufferer, more of a straight up pain) had since surgery has been when I accidentally irritate the hip too much.

    Has anyone else here suffered from any hip issues concurrently with their IC/other pelvic issues?

    Otherwise, great to be here, and much love and support to all the rest of you here, trust me, though I ignored my IC and minimized it,w when it was bad, it was BAD. I couldn't buy insurance pre-ACA because it was on my chart. I endured horrendous DMSO instillments in the 90s, my college career was destroyed by this disease, and anyone who has survived with it is tough as nails. Respect.

    P.S. I was finally SO frustrated (I had surgery with dozens of women who went up to 10 years undiagnosed or misdiagnosed with their hip issues, many who also had either DXed IC or IC symptoms, that I have started a blog. I wasn't sure how to do a signature here, so I just wanted to add it here, because I am fed up and finally turning to activism: http://coreinjury.blogspot.com/
    Last edited by Antonia11; 04-30-2014 at 01:02 PM. Reason: adding link

  2. #2
    ICN Member Clevsea's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Yes, I fell on the ice at my doctor's parking lot about 1 year before I got IC. I did the "splits" on the ice and really wiped my hip socket out. It still hurts. I've wondered about that in relationship to IC because the bladder nerves are in the sacrum and my sacrum is hyper-mobile and it just makes me wonder.

  3. #3
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Good heavens....did they do an MRI to check for a tear in the socket? (My tear was missed the first 2 scans, and one local hip "specialist" claimed it didn't even look like a labral tear to him--my hip surgeon, who does 10 of these repairs a week said it was a "significant tear".) I wondered for YEARS what on earth could've caused my IC, especially as my mother has it as well, and was in agonizing pain the first 5 or so years of it. It ate up my life those years. Couldn't think about anything without thinking in terms of IC. "Is there a bathroom?" "No, can't go to that restaurant anymore...I love this or that dish, and can't have it anymore" (go home and cry, sit alone, wondering why I was cursed with this). It was awful.

    I often wondered, because my spinal MRIs show all normal, but I have a spina bifida occulta on my L5. The nerves are back there, true, but the referred pain from a hip injury can be BAD. It felt like a flare combined with an infection and hurt like I couldn't believe. In fact, I DIDN'T feel it much in the hip, I felt it in the bladder, and it was the strangest thing.

    From your signature, you seem to have symptoms like mine. Pain in bladder & urethra, not as much urgency and frequency. I could always (unless I went and ate something with loads of citrus or try to drink coffee--other than Kava instant, which I find doesn't bother my bladder too much, it's acid neutralized) hold it for upwards of 7-8 hours after the first year and the cystoscopy pain. I did not respond AT ALL to Elmiron, and was on one of the clinical trials for it (jeez, I feel old). Elavil, even 5 mg, knocked me out and cost me a semester of college. Paxil helped the pain a lot, as did klonopin, but too many side effects. Hydroxyzine did nothing. Instillations did nothing. No uro treatments helped me, ever. Tylenol hurts it worse than orange juice, to this day. Yogurt hurts it (?!?!?).

    I need to find where to make a sig! Try having them check the hip, it's worth a shot, though from your injury it sounds like you likely had it checked out somehow. There are nerves in the labrum that can refer pain all over the pelvis. I had no idea of any of this after 21 years of this disease, it took getting injured for me to learn about it. But heaven knows, if that knowledge can help even one other person, I'll tell my story until I'm blue in the face (or fingers).

  4. #4
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    Re: After 21 years of IC, Finally joining up!

    Hi Clevsea,

    I saw my new urologist today. He was very intelligent and really on target as far as I could tell. He thoroughly examined me and said that my problem is extremely tensed pelvic floor muscles that are irritating and squeezing my urethra. He said that unfortunately most pain medications will not work on this type of tension pain. He recommends pelvic floor PT and possibly estrogen replacement therapy. I am having such a difficult time tolerating this pain. I cannot sit for more than 5 minutes at a time without my whole body trembling with the pain. I am thankful I guess that standing/walking or lying flat helps with the pain. I started using the aloe vera gel and I think is helpful. Ice also helps. Have you tried PT? I tried it a couple of years ago and didn't find it helped but my doctor thinks I should give it another shot. It's just so expensive and not covered by my insurance. He asked me if I had lower back pain; I thought it was interesting why he would ask that. I do have lower back pain that comes and goes. I had an x-ray years ago that shows significant deterioration/arthritis with my hip on one side in particular. I have no idea why. I was told years ago to keep exercising daily to ward off the pain/stiffness associated with this degenerative condition.
    Nancy

  5. #5
    ICN Member Clevsea's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Hi Antoinia

    No, it was never X-rayed or MRI'd. It happened at the doctor's office so it was always touchy. I was never going to sue them (for not de-icing their parking lot) because I'm not the suing kind. I tried about 2 visits of PT, not too helpful. I did Chiropractic care on it for years (ever since it happened) and I've done a ton of massage therapy. Massage is an out of pocket expense for me but I have to do it once a week. It helps my neck (hit with a basketball think of that like a car wreck because it was bad) and it helps my IC pain too.

    I have pain in the hip socket and around to the sacrum and in the hip flexor in the front. It's a wide-spread pain in other words.

    I've brought up the hip injury and it's possible connection to the IC to the massage therapist and the chiropractor. My hip is hurting right now but it's got a lot to compete with the IC pain which has my full attention. I knew when I fell that it was bad....huge, huge pain. And, it just didn't heal. I probably do need an MRI and a hip specialist.

    Thanks!!!!

  6. #6
    ICN Member Clevsea's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Hi Nancy,

    I did try pelvic floor PT...it didn't help my IC, in fact I think it worsened it. I went faithfully for 12 weeks and did all the homework.

    Sometimes IC pain radiates around to the low back. I've read that here and in several IC books.

    As to pain meds working or not working on tense pelvic floor muscles I would respond with this....."How about a muscle relaxer then?" I try to voluntarily relax my pelvic floor muscles as much as possible but they seem to want to "help" in other words "guard" from the urethral pain. I can't get them to simmer down.

    Sitting is the worse for me too!! I recline or stand.

    I've used the Desert Harvest Aloe Vera gel....it's okay but Lidocaine Jelly numbs the pain about 30% I'd estimate and that's a good thing!!

    I like ice too. That's my last resort method but I do use it.

    The uro-gyno I've been seeing must be on the Hormone Replacement therapy's payroll because they will not stop suggesting it. I've declined and that hasn't dampened their efforts to get me on board with that.

    I do like an intelligent doctor!! What could be worse than being smarter than your doctor? There is nothing reassuring about that situation. I'm glad your new urologist is smart, this could be very helpful!!

  7. #7
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Clevsea, I found my doctor on another forum, one for general pelvic pain that had a thread about labral tears. Your pain sounds similar to mine, actually, especially with the hip flexor involvement (the psoas runs right over the hip socket, and can spasm out of control due to a hip socket injury of any kind). That will put pressure on the hip joints, especially the SI and pubic symphysis. This has been my experience, at least, and the experience of my former pelvic floor PT who also had recovered previously from a hip flexor injury (though no bladder symptoms or hip socket in her case). This link, and the doctors at this hospital are priceless: http://www.hss.edu/hip-pain-center-f...p#.U2G47uZdWx5 Dr. Bryan Kelley and Dr. Struan Coleman are amazing, and have both studied the links between general pelvic pain and hip injuries/pathologies (Coleman more than Kelley, from my understanding). They also fixed the hips of everyone from Lady Gaga to major sports figures to people like me and other "regular" people. My local docs were not very understanding or knowledgable, so I sent copies of my MRIs to those doctors I mentioned along with two others (Marc Philippon in Colorado and Dr. Byrd in Nashville, Tenn......these were the ones I found most recommended, though there are others). They will look over your scans and at least consult for free, in the cases of Coleman, Kelley and Philippon at least. It was well worth the time for me, and then local doctors couldn't help me due to the amount of muscle tears, so I had to travel for surgery anyway. (Coleman does surgery at both HSS in NYC and Vincera in Philadelphia)

    You've got me curious about the ICN shop now! Good heavens, I do hope they can find something out about your hip! In my case, after 20 years of IC this pain was MUCH more severe and just, well, stranger. I had to fight with almost every doc I saw, saying that yes, I have IC, but this was NOT due to the IC and not normal for my IC. If for no other reason, even if it doesn't resolve the bladder pain entirely, maybe treatment can lessen it and save your hip from degenerating and causing more trouble down the line.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  8. #8
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Kitty, that sounds awful....I was told that about the clenched muscles as well, but turned out to have other bigger issues causing the clenching. Muscles automatically spasm around a damaged joint to try and get you to not move it, the brain does that automatically, from my understanding, and it is very hard to keep from this, not to mention "guarding" due to the pain itself. Kitty, you sound like how I was about 3 months ago. I couldn't sit, there was nothing, no position to release me from the pain. Was this sudden for you or has it worsened over time? Your hip doesn't sound like it's in good shape! Have any of your doctors linked that to the rest of your pelvic pain, or are they saying it's the IC and the clenched muscles? Have they identified why that one hip has degenerated so much? I'm wondering if you maybe have FAI on that side as well. I'm so sorry you're in that amount of pain. I am so recently out of that level of it myself, if I could send you healing in a post, I would.

    Have either of you tried trigger point therapy/trigger point releases? My pelvic floor PT (she had suffered this herself after an injury) was pretty experienced and really good at teaching me to find and release those spots. They were hitting my urethra, and she would have me apply gentle pressure with my finger--very gentle--while doing this specific breathing (diaphragmatic), and I swear, it really did work! I got rid of several points of pain that way. In my case, they kept coming back until I had surgery, but it really helped before I could get to my surgical "reassembly".

    The PT helped me a lot. I'd been sent to other PTs, and they had me doing core strengthening exercises, which as it turns out if your muscles are torn, they just spasm and others start taking over for the ones that are injured or spasming, so my pelvic floor started compensating. I was SO convinced (from the spasming) that I was about to prolapse that I was clenched so tight I was unable to urinate completely for 2 months. Just learning about relaxing, doing "reverse kegels" and such, it helped quite a bit. Well, I stopped having trouble urinating immediately. Along with the trigger point stuff. I kept getting that pain as well, right at the urethra, and somehow what that PT told me to do with the gentle finger pressure while focusing on that point and deep breathing (she said "breathe TO the spot") would eventually work. It took several tries in most cases, but it DID work to get me through until surgery. The PT also found some of the worst internal spots, and worked on them, and I had one transvaginal injection (not a euphemism, and as horrible as it sounds--but it did work) for the worst of the internal muscles. My hip surgeon was surprised that had been done prior to getting to him; he said that one was one of the worst in hip cases (the obdurator internus was the specific muscle).

    The best thing about this particular PT was that she'd been through it, and she sent me home with sheet after sheet of anatomical charts, made me learn every muscle, ligament, tendon, etc. in the entire pelvis. She said I'd have to advocate for myself and be my own best doctor; she taught me how to release muscles, trigger points and even realign my pelvis on my own without a PT, DO or chiro and do it gently. I really owe that woman a LOT.

    At this point, unfortunately, I owe everyone else a lot as well, and most of them didn't do anything for me, and I'm a bit, well, broke at the moment.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  9. #9
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Quote Originally Posted by Clevsea View Post
    Hi Nancy,

    I did try pelvic floor PT...it didn't help my IC, in fact I think it worsened it. I went faithfully for 12 weeks and did all the homework.

    Sometimes IC pain radiates around to the low back. I've read that here and in several IC books.
    One thing I also discovered with the low back pain and IC; it is bad during flares or UTIs. For me, it changed with this, because I was clenching and so unable to sit comfortable (or lay down, really, either) that my low back ended up hurting differently from the previous IC related low back stuff. The muscles were trying too hard to do all of the work holding me up, basically, and were getting hurt and exhausted doing the extra work.

    Just something else I've noticed in my normal IC vs. injury IC battle.

    I'm sorry the pelvic floor PT didn't work for you. Have you tried the reverse kegels?

    My PT and one doctor recommended magnesium as a supplement to help relax the muscles, whereas my internist says to be careful with it. Any experience taking it for you guys? I found it minimally helpful for a while, but I was wary after my internist said to be careful with it. Just curious.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  10. #10
    ICN Member Clevsea's Avatar
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    Re: After 21 years of IC, Finally joining up!

    I just took some Magnesium today. It was only my third dose. Every time I take it I get a headache but the internet says it's prescribed for headaches so I don't know what's going on. I write everything down so I'll keep trying and logging what happens.

    I'll check your link for those doctors. It would be amazing to find out all of my IC began with one icy trip (ha-ha) to the doctor.

    Thanks!!!!

  11. #11
    ICN Founder icnmgrjill's Avatar
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    Re: After 21 years of IC, Finally joining up!

    I'm in physical therapy right now (had an ultrasound today) for a pelvic floor/sitbone muscle spasm and possible tear. Muscles so tight that they were spasming like a violin string whenever I sat down. I greatly appreciated your story! It's a perfect example of what's good in the IC research movement.. the now clear recognition of the role of pelvic floor muscles in triggering bladder, urethral and pelvic pain. Well done!

    They think that mine is from an old muscle injury deep beneath the glutes that happened when I was playing tennis in college… a possible tear of a ligament that has now scarred and has been aggravated. It's all a bit of a guess.. but the good news is that it is responding slowly to physical therapy. I've been doing it for two months now.

    Jill
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  12. #12
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    Jill, thank you, and thanks for putting up with me. I just wrote this out (in a more concrete and less introductory form) over in the related conditions: http://www.ic-network.com/forum/show...er-Pelvic-Pain
    Just knowing the difference between normal old IC pain and the level it hit with this made me wonder if either it started with hip irritation for me or if many diagnosed with IC and other pelvic pain aren't suffering the consequences of hip issues. So many disorders get mentioned in related discussions all over the web, but IC is one that never, ever comes up. That is very interesting about your injury and the sitbone pain! I just (boy, I was a mess!) had a lot of scar tissue removed from the sitbone on the right side along with a minor repair to the hamstring tendon that attaches there (yes, this was all in one surgery!) and at 4 weeks tomorrow, I can actually SIT without pain there for the first time in a year. I'm glad that therapy is going well for you, even if it's a bit slow! I have, sadly, been schooled in the sitbones as well. The hamstring tendons attach there (the ischial tuberosity) and the pudendal nerve is in the general vicinity as well, so any spasms in that area can cause a bit of nerve irritation until the muscles calm down a bit. Mine had years of scarring, and hurt whenever I walked--but didn't stop me from my 6-8 mile a day regimen, only hip surgery finally did that...lol.

    I think we may have spoken on the phone 2 years ago, when I was desperate for information on how to buy insurance for myself when I kept being denied due to IC! In any case, thank you for the info then, and thanks for this network. At the time, I was terrified that if I even acknowledged my IC, it would again spiral into pain, obsession with diet, and the insidious manner in which it can take over one's life. Now that I've been through such extensive pelvic/hip injury, I don't mind one bit, I only want to share what I've learned and possibly save others from the agony and havoc this can wreak on so many lives.

    Clevsea--it would be interesting to find out! And in any case, it would be good to get that hip looked at as well! I do hope that you get some resolution in both cases, regardless. Please update me on what they find, if anything, but don't get discouraged if they don't do much. As I said, the doctors above will consult if you send your disks if a local doc is not as knowledgable or is dismissive.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  13. #13
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    Re: After 21 years of IC, Finally joining up!

    What were your symptoms? Are you food sensitive? Just wonder if referred hip pain can cause the thinned/broken bladder lining.

  14. #14
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    prisd--actually, I'm glad you asked, because when I really look back on it there was the hip/hamstring pain then as well, but also something systemic. I (along with every other woman with a high metabolism) just didn't react well to dorm food, and a lot of us got very irritated stomachs. There was a massive run for the women's room on our dorm floor after every meal...lol. I was under sudden academic stress, and went from drinking tons of the free grape juice downstairs to suddenly having it hurt my stomach as well as bladder. Then this flu went around, and they put just about everyone on erythromycin. It was after that that I started really noticing the bladder pain/frequency, which continued until I was DXed that following summer with cystoscopy/hydrodistention. I did have the "pinpoint hemorrhages", as they were referred to then, and pain and frequency. Also a bit of pain with sex at first. My stomach normalized a bit, but after the cysto (the uro explained that my bladder was smaller than what they expected and they accidentally distended it too much) the bladder just got worse. Mainly food sensitivities and pain, urgency and frequency were further down the list, and got better with time.

    In short, I have absolutely NO idea. My first episode with my hip was when I was 9, and doctors thought a virus I had had had gotten into the hip socket (I have been told that that is as absurd as it sounds), but I remember always being just really bothered after that by having ANYTHING in my bladder when I went to bed. I'd get back up several times as a teen, long before I had any pain, with this desire to make sure it was empty. I was a real treat at sleepovers...lol.

    When I got symptoms, my mom had been finally DXed about 2 years before, so she knew about the dietary restrictions, and I started those a bit before even having the cysto. I don't think the hip could've caused the lining to have gone, but maybe it being more sensitive over the years made it weak and it finally went in that "perfect storm" of whatever happened Freshman year?

    What I DO know is that when the labrum was finally torn last July, the referred pain to the bladder was enormous. And like nothing I'd ever felt in 20 years of IC. That was exactly the 20 year anniv. of my cysto. in terms of month, and I thought I had a flare on top of a UTI on top of having possibly having been sneaked some vitamin c pills or something. It was absolutely horrendous, and I heard some of the other people getting labral tear repair mention having had referred pain all through that area as well, also to the bladder, people who hadn't had IC. I had referred pain so bad to the urethral/clitoral area that water in the shower was suddenly too painful to stand for a week or so. I knew my hip hurt a bit, but I was feeling it worse in the bladder/groin area. That was later overtaken by massive spasms from my low back through the pelvis all the way to the knees, after I tore so many muscles. But when they said I was negative for a UTI, I was shocked and thought this was some new hideous form of IC thrown down on me, and now I'm back to where I was before the labral tear, and I'm not even fully healed yet. Tolerating foods very well again, even an acid neutralized coffee I drink sometimes ("Kava" is the brand).

    There's no getting the lining back, but when I think that someone might be pursuing a urinary DX if they had something with the hip and this whole process is just starting for them, it might save the bladder a bit to get the hip addressed, if that's what the primary issue is. I haven't read about the lining issue in years, and need to catch up on my IC research (back then, it was the ICA and these monthly mailings, no internet). But heaven knows, that referred pain I felt (and others have reported, even men who feel all sorts of genital discomfort and urinary symptoms from labral tears) was so bad I can see someone running to a uro for a DX of a bladder issue and PFD as well, from the spasms. And even if the lining is gone (which is horrible enough), if that referred pain from the hip can be eliminated, that's a LOT of pain and spasming that can be removed in one procedure. (Not to mention, the spasmed muscles from a labral tear often do lead to muscle tears if you're really active, from trying to work muscles spasming around a joint injury.) Sports hernias following labral tears are common, and no one needs that much pelvic pain in the first place, but with IC in the mix it just adds that much more agony.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  15. #15
    ICN Member Antonia11's Avatar
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    Re: After 21 years of IC, Finally joining up!

    My trainer sent me to a chiropractor for adjustments, and one day after I kept reporting the hamstring tendon pain, he decided I MUST have something wrong with the hip socket. I must have been out of my mind and overly trusting to have let him do this (chiropractors I've talked to since have said they would NEVER do an adjustment of this kind, that it's not even a "real" chiro adjustment), but he said he was sure I had hip dysplasia, and my hip wasn't in the socket correctly, and that "resetting it in the socket" would fix me up fine. Uh huh. He had me lay down on my back, and using a drop table started lifting my leg and jamming it into the socket. After about 5-6 times of this, I had this sudden pain and "something's wrong" feeling, and made him stop. He was upset, said the hip was still "not in the right place". I just trusted him, he was a friend and part of the training school I practically lived at. Anyway, he had torn the labrum at that point. I took a break and just walked instead, but my trainer kept sending me back to him because I had that sudden bladder and groin pain I mentioned. I felt my core muscles not working correctly. He was supposed to help DX the sudden pelvic trouble and clear me to train, which he did (I did get an X-Ray, but those don't show labral tears, just showed that I had no dysplasia--my FAI was so minor that even local hip specialists didn't notice it--so the x-ray was pretty useless in that regard).

    So I was cleared to train, went to do some groundfighting and in one or two thrusts of "bucking" (this was with a male partner about 180-200 lbs; basically you do what they call a "bridge" in PT, but explosively, and throw him off of you with the force of the buck--it's self defense if someone tries to mount and strangle or beat you if you're on your back on the ground being attacked, and I've done it literally hundreds of times with no problems) I tore my rectus abs and 8 adductors (inner thigh).

    I more recently found out that this "chiropractor" hasn't had a license since 2008 and is now under investigation for practicing, and practicing VERY questionably (he was also doing PT on VERY disabled people), without an active license. I have been going through hell from having this done to me, and I've not really shared it, don't know why I felt the sudden need. Please excuse me for that. I just can't take it some days that someone I trusted sent me to someone else I trusted and he basically destroyed my pelvis. Started smoking cigarettes, which I haven't done in years, kept getting the Dr. Drew treatment from doctors AND this fake chiro, who told me I was turning into a hypochondriac and it was all in my head.

    All I could think was that I beat all of these pain disorders, ended up pain free to the point that I was fight training against big guys (I'm extremely small) and really healthy, and this one con artist fake chiro just smashed it all with one unfounded and weird idea on some whim that I needed my hip "put back in the socket correctly". I was really healthy, and actually a pretty good fighter! I was going to start teaching women's self defense, but that's down the toilet now, too. I can't even find an attorney, or I'd never be posting this publicly, because he was not licensed and likely has no malpractice insurance. Worst of all, his inactive license status was right there on the state health website, and apparently I'm the only person in a whole training school who ever bothered to look him up and call to ask if it was legal for him to be treating people!

    Anyway, thanks for letting me share that. I'm angry and hurt, and the flip side of that reaction for me is to start being an activist and trying to help others. Otherwise I'd get unhealthily preoccupied with feeling really screwed over all the time. At least with IC, it's something I've had forever, and this helped me discover a link between labral tears and bladder pain that might at least help someone else out there.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

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