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  • SSI Disability for IC?

    Is there anyone here in the US who has been successful in obtaining SSI disability for IC? After suffering for over a year and trying a few different therapies I'm finding that I am less and less able to function. My family has encouraged me to file for Social Security disability, and I've looked into the process and it is overwhelming and a bit discouraging to say the least, they want SO much detail about doctor visits, I can't even remember all the different doctors I've seen trying to even get diagnosed. I'm wondering how difficult it is to get disability benefits for this condition. Any help would be greatly appreciated.

  • #2
    Yes, there are people who qualify and receive Social Security disability payments for IC.

    Donna
    Stay safe


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    [3MG]

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    Comment


    • #3
      The ICN does have a IC Disability package you can order
      -Cassie

      21 year old female. Diagnosed as of November 2008 with onset of symptoms.

      I am currently diagnosed with IC, PFD, endometriosis, asthma, and vulvodynia/contact dermititis, IBS, and fibromyalgia.

      Medications:

      IC:
      -Amitryptyline 10 mg

      Fibromyalgia:
      -Neurontin (in place of lyrica because I can't afford it- lol) 300 mg x3 a day
      Flexeril. 10 mg. As needed.
      -
      Endometriosis:
      -Microgestrin.
      First laparoscopy showed moderate to severe endo

      Comment


      • #4
        IC Disability package

        Thanks for the information. I cannot locate this on the ICN. Could you please direct me? Thanks.

        Comment


        • #5
          I receive Disability

          Jen, I was diagnosed with IC in 2003, in the 7 years since diagnosed I have gotten progressively worse for me. It became incressingly hard to work, I would have to call in or leave early so they eventually fired me. I day after I was fired, I filed for disability. It took me 2 1/2 years from the first day I filed until I was finally approved and got disability. I know that they sell some sort of kit or something to help people with the paperwork. I did it all by myself until I was denied the second time. I then hired an attorney and with his help I was finally approved. If you believe that you are disabled and that you need it just be ready for a fight. It is almost certain that they will automatically deny you, you definitely need to fight it....
          Started Vaginal Valium Suppositories April 2014
          Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
          Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
          Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
          Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
          Interstim repair December 2008,Removal of the Interstim August 2011,
          6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
          Diagnosed with Raynaud's Syndrome November 2013
          Ambien 5mg for sleep.
          Elivil 50 mg at bed
          Lisinopril 20mg in AM
          Effexor 225 mg
          Oxycodone 10 mgs 2 x a day for pain
          Baclofen 20mg 3x a day
          Phenazopyridine 200 mg as needed
          Omeprazole 20 mg at night
          Lyrica 450 mg daily
          Requip .50 mg at night
          Ketorolac 10 mg as needed for migraines

          Comment


          • #6
            I was granted SSD for IC in Oct 2010. I tried applying myself a few years ago &was denied. Then I hired an attorney & was approved on the first try, took about 5 months with the lawyer.
            PM if you have any other questions..
            Karen
            Currently Taking:
            20 mg Celexa
            fentanyl patch 12.5 mcg chgd every 3 days
            morphine IR 15 MG, up to 3x daily
            Xanax 1mg as needed (not taken daily)
            900 MG Oxycarbizine (mood disorder)
            300 MG Welbutrin
            Tizanidine 4 mg up to 20 mg daily as need
            Prevacid 30 mg
            Ambien as needed

            my heating pad is my best friend, use daily on my lower back & pelvic area
            blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

            Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

            Comment


            • #7
              I have had helped numerous people apply for SSD with IC and yes it is possible. I recently wrote an article on applying for SSD with IC in case you are interested:

              http://www.socialsecuritydisability....itial-cystitis

              Comment


              • #8
                Wow! Thank you for sharing! It is great to know that there are others that have had experience with this condition! I have a question (one of many in the future, I am sure! )

                First off let me explain my status: I am 31 years old. I have had PCOS for several years. Before being diagnosed it took 2 years of TTC with fertility medications (Clomid) and gave birth to our son (via C-Section) in October 2009. I had 2 miscarriages after that. I first began having IC symptoms in October 2011, and after ruling out infection I was diagnosed in December 2011. I immediately found ICA and ICN and began the "IC Diet". My symptoms almost completely went away for 7 months, other than a few very mild "flares" once in a while, especially around my period. In early August my IC symptoms returned with a vengence. I am having symptoms every day since then. It is even worse during my periods. I have always had painful, heavy periods but My past two periods have been excruciating! It is so bad that I FEAR my next one! So my questions to you , I am wondering if you know if getting a hysterectomy would help me? My husband and I always wanted and planned to have one more baby, but I am not sure if that is a wise thing to do, if it is selfish? I heard that some women go into remission during pregnancy. I am just so scared because I feel like that choice is being taken away from me. My friends and family think that it would be wrong of me to have a baby, not knowing how my IC will progress. I need to hear from someone with experience, get their view. BTW I am also in the process of applying for disability and SSI.

                Mindy

                Comment


                • #9
                  Have you had a lapriscopic surgery to check for endometreosis? I have the same issue as you with really bad periods. I had the surgery done & it turned out I had severe endo. My surgeon removed as much as possible, but I was told it would grow back. Well I have had 3 periods since the surgery & the pain is still bad, the period is still heavy. So I am in your boat, considering a hysto. It is a very personal decision. I have 3 kids, youngest is 10 so I am finished as far as babies. I am tired of feeling even more pain during my period on top of my nasty IC.

                  So IMO, I would get a consult with an OBGYn & see about possible endo. Then its your chocie if you wish to do the hysto. I am heavily leaning towards one for myself.

                  As for SSD, i applied with a lawyer 2nd time around & was blessed to get approved within 3 or 4 months. Please hire a lawyer to help you, it is just to hard to do it alone.

                  Much luck & health to you!!!
                  Karen
                  Currently Taking:
                  20 mg Celexa
                  fentanyl patch 12.5 mcg chgd every 3 days
                  morphine IR 15 MG, up to 3x daily
                  Xanax 1mg as needed (not taken daily)
                  900 MG Oxycarbizine (mood disorder)
                  300 MG Welbutrin
                  Tizanidine 4 mg up to 20 mg daily as need
                  Prevacid 30 mg
                  Ambien as needed

                  my heating pad is my best friend, use daily on my lower back & pelvic area
                  blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

                  Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

                  Comment


                  • #10
                    Thank you for the reply! It is so nice to be able to ask someone who KNOWS what I am going through, and the whole emotionally draining decision-making process. Thank you so much. I guess I just need thoughts from someone.... I have a close friend and my Mom who think that I am a completely selfish person for wanting another baby when I am faced with this condition, not knowing how it will effect my future. Maybe I need to start a thread about that topic and get some insight to all types of women that have IC and how they feel about it given their unique circumstances..

                    I haven't had surgery to check for Endometreosis, no. I had several ultrasounds before becoming pregnant due to fertility issues and pcos, and my OBGYN did not believe that I had Endometreosis, but that was 4 or 5 years ago, so that is a good idea to have it checked. I do not have pain after intercourse, so I figured it wasn't something to think about. I do have a family history of Endometreosis though. My sister and aunt both had very awful experiences with it.

                    I've been doing some research, and reading a lot on the ICN website and read that having a hysterectomy can actually create worse symptoms for IC sufferers.... Darned if we do... But like they say everyone is completely different.

                    Are disability lawyers very expensive? I definitely want to go that route, but am totally unaware of costs and all that... Sounds like it is worth it though!

                    Thanks again!

                    Mindy

                    Comment


                    • #11
                      Hello,

                      It is possible for people to receive SSD benefits with IC. However, the SSD process is anything but easy. Almost 70% of applications are denied at the initial level and most will have to go to a disability hearing in order to be approved for benefits. It can take over a year to have a hearing in scheduled in most states due to the backlog of cases in the system.

                      Here is some more info on the application process.

                      Good luck with everything!

                      Comment


                      • #12
                        My SSD lawyer took a percentage of my backpay. Thats usually how most lawyers work it, they dont get paid unless you win. Therefore they will do their best to win for you!! The above member is correct with apps being denied 1st time. It usually happens because the SSD wants to see if the person is TRULY determined to win. Alot of people will just stop after the 1st denial. I say keep going until you win!!!!!!!
                        Karen
                        Currently Taking:
                        20 mg Celexa
                        fentanyl patch 12.5 mcg chgd every 3 days
                        morphine IR 15 MG, up to 3x daily
                        Xanax 1mg as needed (not taken daily)
                        900 MG Oxycarbizine (mood disorder)
                        300 MG Welbutrin
                        Tizanidine 4 mg up to 20 mg daily as need
                        Prevacid 30 mg
                        Ambien as needed

                        my heating pad is my best friend, use daily on my lower back & pelvic area
                        blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

                        Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

                        Comment


                        • #13
                          Hi. I am 31 and fighting for disability benefits with a lawyer. He is taking 25% of the back pay that I receive if and when I am approved. That is the max the disability office will allow a lawyer to take. The lawyer only gets paid if you win also. I have massive anxiety that causes me to pass out without any warning along with the IC and I was denied first try. I am in the reconsideration appeal process right now.

                          As for the hysterectomy, I had one in March of this year. There was a problem with my bladder not wanting to stay out of the operating field and my gyno messed with it alot during the procedure. I was in excruciating pain for over 4 months after the surgery and was diagnosed with IC after a cystoscopy with hydroextension. The urologist said the surgery caused it to flare up massively and I have probably had it for a few years. It explains a lot of my pain and infections for the past few years. I am still in a state of constant flare up and just now got into pain management to control the pain. Any type of abdominal surgery will cause the IC to flare up according to my doc.

                          As for the child issue, I wish I would have had one more before the hysterectomy. My gyno thought I had endo but it just turned out to be massive ovarian cysts and with a family history of ovarian cancer, he took everything out. I have two children, a 10 yr old boy with my first husband and a 7 yr old girl with my new husband. I wish we could have had one more but my daughter caused massive complications complete with blood transfusions after I had her so doc said no more children. If you want one, talk to your OB/GYN and urologist to see if it will affect your IC. That is the only way to know what to do. Do not let anyone else make your decision because of what they "think" is right for you. Make up your own mind after you have all the facts.
                          Diagnosed with IC in July of 2012

                          Complete Da Vinci hysterectomy because of abdominal pain in March of 2012

                          Diagnosed with Fibromyalgia in January of 2013

                          Anxiety since 1996 and a fainting problem no one can figure out so they blame it on anxiety.

                          Extremely chemical sensitive so I cannot take most medications.

                          Current meds:
                          Ativan 3-4 mg at bedtime for anxiety
                          Hydrocodone 10mg 4 x day for pain
                          Phenegran 25mg every 6 hrs for nausea

                          Been following the strict IC diet ever since I was diagnosed and still in pain daily

                          Currently not able to work and fighting for disability.

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