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  • I am so EMBARRASED!

    I have a history of ovarian cysts but they usually don't bother me at all. I woke up this morning in Horrific Pain on my right hand side below my stoma. I was called into the Hospital. I had a cyst on the right ovary that burst and is leaking fluid. My OBGYN said that I should feel better in a week.

    I am also having some really embarrassing pain due to a condition known as Clitodynia which is kind of a sister condition to Vestibulitis and PNE. It feel like a serious paper cut around the clitoris. I really did not want to discuss it but I am hoping that it could help others who may have it or have symptoms. I can not touch it, not even with underwear. I have to lie still and pray for it to end. I 've been having severe symptoms as with most of my other diseases right around ovulation and period time. Ice and Lidocane are being used along with Lyrica and Fentanyl (not much relief).

    I am so embarrassed. It is at times like this that I thank God Every Second for my Disability. And for a wonderful Husband! I could not do this journey without him.

    Kara
    Last edited by Kara29; 05-08-2007, 10:00 AM. Reason: spelling
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    Wow! I am sorry you have been having all that pain and had to go to the hospital. At least they found out what it was and hopefully, you will start to feel better now.

    Please dont be embarrassed about the other. It is just a body part, like any other. To the OB/GYNs, it is just like seeing your toe would be to a Podiatrist. No big deal to them! I know it is hard to think of it like that, but it helps to know that's how they think of it.

    I hope that your surgeries will help you alot and you will finally be able to reclaim your life.

    Love and hugs,
    Amy

    Comment


    • #3
      I agree with Amy on that Kara, dont be embaressed.. You mentioned Clitordynia, well that is what my GYN said I had, I dont have the pain all the time but when I do I cannot even wear panties all I can do is lay on the bed sprawed out... Its awful, I am so sorry you are going through this along with everything else, It just does not seem fair.. (((((((((((((hugs))))))))))

      Ronda
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        Dont be embarassed Kara!

        You have been through so much, it bothers me deeply to see you are still suffering. I also have problems with my clitorous. It gets a twitchy aroused feeling one in a while that drives me bonkers! I hope you feel better soon, and the decompression surgery is successful!

        Erika
        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control

        Comment


        • #5
          Oh, Kara, it's nothing to be embarassed about. But I know how sensitive you are and that you actually are embarassed, so I just want to say, it was very brave and very generous to share that on the boards, in case it might help someone else.
          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
          Wishing you happiness and good health, and all the best out of life.

          Peace, Carolyn
          ___________________________________________________

          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


          On the Beach with IC

          Comment


          • #6
            Please don't be embarrased!
            Meds I take:
            Elmiron, Elavil, Vagifem- for IC
            Albuterol, Flovent, Atrovent- for Asthma and lung problems
            Paxil, Clonazepam- for depression and Anxiety
            Atenolol- for rapid heart rate
            Nexium- for Gerd
            Levothyroxin- for Hypothyroidism
            Lasix, Pottasium- for edema
            Lipitor- for High Cholesterol
            I coated aspirin
            02 at bedtime

            Comment


            • #7
              I hope tomorrow is better 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


              • #8
                Kara...Sending you (((hugs))) and lots of prayers.
                Sharon

                Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                Where I can be found most days.



                Link to the ICN Patient Handbook:
                http://www.ic-network.com/handbook/

                Link to the IC Diet:
                http://www.ic-network.com/diet/


                IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Comment


                • #9
                  Please don't be embarrased....it is people like you that have helped so many others. I thank god for this website every day and for everyone on here that replies to messages and posts them.

                  It was very brave of you and I hope u feel better soon. Take care
                  Live your life to YOUR best, and Love to YOUR best!!!



                  DX in 03 with Shingles
                  Removal of Left ovary due to Cyst in 2005,
                  I have had cyst since I started my period as a child age 12
                  Hysterecotmy December 06
                  IC DX March 07 by PST
                  2 "rescue" instills in March 07
                  Cyco May 07 confirmed IC
                  Uro study June 07
                  1st Pain Block July 17,08
                  Hydro/Cysto Nov 11, 2008
                  12-11-08 was told I had alot of inflamation

                  Meds: Allergic to 6 things
                  Premarin......taking the gen cause I get it at Walmart for 4$$
                  Presique for my drepression :woohoo:
                  Abilify for my depression
                  Adderall ...found out I'm ADD...makes sense now
                  Kolopin for anxiety
                  Noroco for my pain
                  Valtrex for my shingles as needed

                  Sorry if my spelling is off on the meds [/FONT]


                  http://community.webshots.com/user/s...host=community

                  Comment


                  • #10
                    I have that as well and it's miserable, as well as the unwanted arousal that nothing really takes away. I've considered a female circumcision at times, but I probably couldn't get that. (Could I?)

                    I hope you feel better. It seems like some of us just keep suffering without relief and it's hard to understand why. I couldn't make it without my God either.
                    http://www.TheCraftyEwe.etsy.com

                    Comment


                    • #11
                      I feel like its time to say that I am just broken from "THE WAIST DOWN". Each time we seem to be coming to some conclusions as to what is happening and how to treat it, something else comes up "DOWN" there.



                      At least we are all in this together and we can help each other.

                      Kara
                      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                      I also have some journals of my journeys, past and some present at:
                      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                      Comment


                      • #12
                        Yeah, I'm thinking from the neck down. *pout*

                        Uh oh. I've got a pity party coming on! Darnit. I'd better go make a pot o comfort food.
                        http://www.TheCraftyEwe.etsy.com

                        Comment


                        • #13
                          Sending you 'hugs & kisses.
                          Sandra & family
                          "Never Give Up."

                          To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                          My Photobucket Link:
                          http://s237.photobucket.com/albums/f...ramack_photos/

                          Comment


                          • #14
                            Klara, when I had it, about a year ago. I finally turned on a fan and pointed it in a certain direction to hit directly, while laying on the bed. It seemed to give me some relief. I feel for you, you have been through so much and you're so young. Hope you're feeling better tomorrow.
                            Take care,
                            Bianchi

                            Comment


                            • #15
                              Pudendal Nerve Entrapment (PNE)

                              I have talked with one of my Doctors regarding this. Clitorodynia is as a direct result of Pudendal Nerve Entrapment (PNE). The only "cure" for it is Pudendal Nerve Decompression Surgery. This is extremely controversial and only done in 3 places in the US.

                              The dilema is that I have PNE with Vestibulodynia and have to have both surgeries. The Surgeon that is closest to me does not do PNE Decompression. The Surgeon that is far from me and also the most qualified Specialists to take care of me, does both Surgeries at once. The Surgery and Hospital stay is covered by my insurance. It's the lodging. I would be staying in the Hospital for a week and then have to stay locally for another week.

                              I am so close and have found some answers that for 10 years have been unknown so I guess I should be grateful for that.

                              I am pretty distessed about this. I'm in so much pain I am thinking about risking my Disability to find a job (standing up) so I can save up. I know this is irrational and probably not logical. I would probably lose more money in the long run if I do this, not to mention the loss of my Disability. It also took me 3years to get the Disability and is something I wish not to repeat.

                              I'm trying to reason this out in my head but I am having so much trouble....

                              I needed to talk to someone. My Mom just went out on her own Disability for her Cancer so our family is not as stable as we were.


                              Kara
                              Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                              "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                              I also have some journals of my journeys, past and some present at:
                              http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                              Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                              Comment

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