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Still Lost - Post Laparoscopy

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  • Still Lost - Post Laparoscopy

    On 1/10/20 I had a laparoscopy to remove endometriosis. There was no indication if the surgery would make my IC worse or better. I was told there was no way to know for sure. The first few days following surgery I noticed a little less pain than usual however, I was barely moving off the couch, had little stress, and wasn't eating much (bland light diet for what I was eating). Has anyone else had a laparoscopy or similar procedure and had issues? I had a catheter for about two hours during surgery and experienced irritation and stinging but that went away after a day or so. Up until the day before the procedure, I was taking Lo Lo Estrin birth control. My surgeon had me discontinue it prior to surgery and wants me to start Orilissa and Norithrendrone post op once I get a period. Problem is, I haven't gotten a period yet due to being on continuous birth control for 2 months... I really want to start these new meds and see if they help but I can't until I actually get a period.

    The last few days my IC has flared so severely. Frequency, pressure, and pain are all up. I am on Norco daily under the care of a pain specialist but its losing effectiveness and I've had to take more and more over time. The pain specialist wants to get me off Norco soon. I've tried Cystoprotek, pelvic floor therapy, antidepressants, natural supplements, heat, rest, limited exercise, lidocaine patches, NSAID's, massage, acupuncture, Uribel, Azo, antihistamines, and so much more. I've been to 5 urologists. I've tried all their recommendations. I've listened. I've suffered through every side effect from every medication. I am tired. I am broken down. I am at the point where I do not care about life much. Bladder instillations are not an option due to risk of UTI and not being able to take antibiotics due to cdiff history. I've had 2 fecal transplants because of cdiff and I have severe PTSD over hospitals, medical issues, and the like.

    I've been positive, I've persevered, I've held hope. It's been over 2 years with IC. I also have severe IBS. I don't drink, I don't smoke, I don't do much of anything. I watch my diet. I am still searching for answers. I see a therapist regularly. My nightmare with health issues started with a GI infection 7 years ago and has snowballed -- including 3 colonoscopies. The only reprieve I get is for a few minutes in the shower when the pain is somewhat dulled and I've taken a large dose of a painkiller. I'm 29. I have little social life, I cannot maintain a regular normal romantic relationship. Any help is appreciated.

  • #2
    How long has it been since you took the last birth control? Does it usually take very long to start your period when you do the break from them? My heart goes out for you. I wish I could have a perfect answer for you.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I took the last dose on 1/9/20. Before 2 months ago, I had never been on birth control. So I have no idea how long it’ll be before I get an actual period. I had very very light spotting but no actual real period yet. My docs office said everyone’s body is different and it could be a week or it could be a month, it just all depends... I am so uncomfortable. I don’t know what I did wrong. I was not flaring like this after the procedure or for many days after. Now it’s all hitting again. I even did a home UTI test because I was paranoid but it was negative.

      Comment


      • #4
        It might be your hormones flaring you...maybe your period is on the way. My ic always got worse right before my period. I’m sorry you are in so much pain. Being on BCP actually always helped my IC. I wonder what the reason is that you have to wait for your period to start? Have you tried Elmiron? I know it’s controversial right now but it helps me.

        Comment


        • #5
          Hi Melinda. Still no period. I never thought I'd be praying for it to show up. My IC was always worse right before it too. I want to take the birth control and see if it alleviates anything but I'm a sitting duck right now. The surgeon's office said you have to wait for your period to start so you have normal cycles. If you take the Orilissa and birth control before your period arrives it causes sudden breakthrough bleeding and irregular periods as well as random bleeding that feels like a period but isn't. They said if I start the meds early it will throw my body off entirely and I will never have a regular cycle or know when it's on it's way if I ever was to get off the meds at some point. They said they've had one other patient who has started meds early because she had to go back to work right after her surgery and was in considerable pain. But it is not common for them. I will express my issues to my surgeon. I have not tried Elimiron. I have suffered through so many medications and side effects and I have long term damage from IC meds as well as meds when I had cdiff. My body has been through the ringer including hair loss and permanent gut damage along with so many other problems. Every urologist I've talked to has said Elmiron is extremely hard on the body and not good for someone with IBS like me as one of the common side effects is diarrhea. I also don't want to risk vision loss and whatever else Elmiron can cause. I'm glad it works for you. Do you still take birth control or are you just on Elimiron now? What works best for you?

          Thank you!!

          Comment


          • #6
            This is not your fault! I suspect it's happening because of hormonal changes in your body. I just hope that once you get your period and can take the new medication, you will feel better. I know it's not easy, but hang in there --- things will get better.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              Thanks for the encouragement Donna. I'm hoping things settle down soon. I cannot pinpoint exactly what caused this flare and sudden increase in pain other than the fact that my insides were manipulated via surgery and they're not happy. I also wanted to give Prerelief a try if I eat something that flares me but I am leery as I don't know if it's an antiacid or PPI like the regular Pepcid and Prilosec etc. I cannot take those as acid reduction can cause an environment which makes me more susceptible to cdiff. I've messaged my doctor to ask. I'm trying to figure out what else I can try for IC. I even tried a TENS machine. The only thing that slightly works is NORCO but it's not working how it used to. I can't help but think there is something else going on here besides IC. The pain is unbearable. I believe you take NORCO, how do you not build a tolerance to it?

              Comment


              • #8
                I know this post is from January but I just wanted to comment and see how you’re doing. I have IC, IBS and Pelvic congestion syndrome. Ugh. I know what you’re going through. I’m 35. We have a lot in common if you ever want to chat

                Comment


                • #9
                  Jppow, what is pelvic congestion syndrome?
                  Pat

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