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  • Embarrassing question

    I went to my first uro appointment on 3/6. Started IC flare on 2/4. She did the pelvic floor exam and found lots of tension and triggers. It was a 6 hour drive total, plus the 2 hour appt. On Tues afternoon I notice stinging sensations on my clitoris. I took a sitz bath with no relief. It felt like fire ants there all night...nervy. I noticed swelling there and to date its still very tender with less swelling. I am not sure if this was due to the stress of the exam and drive or if I now simply have pedundal nerve problems too. My sciatic has been bad ever since this flare started and I know the muscles and nerves are all intertwined in the pelvic floor. I had also just started a new compounded progesterone the week before. I was nervous it was affects from that and the testosterone shot I received the week before. Now I am thinking it is related to IC/PFD??? I am on 10 mg amitriptyline, 10 mg hydroxyzine, and waiting for vag valium supp and elmiron to arrive. Anyone else have this and what will help to reduce the sensation and pain there? I can't get in to the PFD PT until April 7th and my follow-up with uro for cystoscopy isn't until the 19th. Its just so embarrassing and definitely making intimacy a big no with my husband. I thought just the IC pain and frequency were enough and now this?? Thanks for input.

  • #2
    Re: Embarrassing question

    I have had IC for a while and now and then, I will get pain/burning in that area that hangs around for a while. I believe it is hormone related (as I also think my IC is).

    For me, progesterone is a big trigger, and the testosterone might be affecting it as well. If that's the case, I would think it would calm down with time.

    I know, as if IC isn't enough to deal with, right? I hope you start to feel better soon.
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

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    • #3
      Re: Embarrassing question

      My progesterone was in the tank per recent bloodwork despite being on 200mg of plant based prometrium for over 2 years. So I was put on a compounded day release. Its so hard to decipher what is causing what. I need the hormones for other reasons and I heard that progesterone helps with the bladder lining. ugh. I hope its hormones and not the pedendal nerve. Trying to be positive. Thanks for your help.

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      • #4
        Re: Embarrassing question

        Are you putting the progesterone locally or on another part of your body.

        If it us timed released it could be the time release stuff not the progesterone.

        You are on a low dose of ami and hydro can you talk to your doc about upping one or both.

        Use ice I locally, clean around your swollen C with a soft wet cloth, sometimes a white thick gunk collects there and can irritate things.

        Good luck
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment


        • #5
          Re: Embarrassing question

          Please don't ever be embarrassed here on this forum. We all go through some weird and embarrassing symptoms, but chances are someone can identify with what you are going through. I understand so much what you are feeling!!! I have been having that same sensation and believe me, I would rather have the pelvic pain I experience over the hypersensitive clitoris. Mine started when I inserted an estrogen, progesterone and testosterone compounded cream that was actually intended for topical use. I developed a baseball sized rash around my vagina! This all knocked off my vaginal ph leading to BV (which I had never ever had). I went through four rounds of antibiotics to clear this up. Anyway, prior to all these events I had given myself an instill and noticed that when I urinated it out...my urethra was killing me! I cried and cried. All this to say..I am finally seeing a light at the end of the tunnel. My PT (who is fabulous) has been a lifesaver, along with friends from this post and a vaginal estrogen cream.

          My PT said all the events mentioned above caused the perfect storm for some nerve irritation down there. Along with this she checked my clitoris (God bless these precious ones), and said my clitoral hood is adhered to the clitoris due to lack of estrogen. She is actually doing PT on my clitoris - LOL!! Sorry if this is TMI, but I want to help others just in case they have similar problems. The only one ( other than you guys) that I have shared this info with is my hubby!! Anyway, she takes a q-tip and gently lifts the hood away from the clitoris for a few seconds. She is trying to make it mobile again. I get the sensation when I walk, bend a certain way, etc. Along with this I am inserting a bioidentical estrogen cream and then putting a dab on my clitoris. Also, I am taking Tramadol and Ativan, which relieves that sensation. I only take a half a Tramadol and half an Ativan. All these things are beginning to help. I was so afraid the sensation would be permanent, but she asssured me it's not. It will, however, take time.

          This was my experience and maybe it will shed some light on why you are going through this. I bet those nerves are irritated and being testy. Be gentle and pamper those nerves and they will get better. Oh...I also drink chamomile tea to help calm my over-ramped system.

          I will be thinking about you! Please keep posting and let us know how you are. Also feel free to ask about anything!! We are here for you. Hugs!!

          Comment


          • #6
            Re: Embarrassing question

            TMI doesn't exist here, imagine sitting around the table telling theses things about our selves, but it is important, it just might be that little tidbit that helps some else
            My are with you all. May you all find a way to peace and joy in your lives.

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            • #7
              Re: Embarrassing question

              Progesterone is compounded pill. Its really feels like nerve and irritation. Thanks for responding!

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              • #8
                Re: Embarrassing question

                Oh my gosh thank you for sharing your similar experience! I just started with bio hormones and a shot of testosterone the week before this all started. However, I saw the urologist of the first visit the day before the sensation and pain started. So now I don't know which is causing the pain and irritation. Im waiting for the uro to call me back hopefully tomorrow. Im so frustrated and have to wait to see the pelvic PT until the 7th to see if its the pedendal nerve thing with my PFD. This IC is all new since Feb and I am overwhelmed. I'm hoping to get answers soon, but you really have given me hope that this too is not going to be my future. When my first IC flare happened last month unregulated all of my old nerve pain from injuries and back surgery. I even have a tooth with nerf pain that had healed after inflammation from sinuses that is now yelling at me. Just never had clitoris pain...or pain with intercourse. Poor hubby is on hold for awhile lol.

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                • #9
                  Re: Embarrassing question

                  I guess you are right! thank you!!!!!

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                  • #10
                    Re: Embarrassing question

                    I have had very bad clitoris pain sometimes. Only thing helping me, is my osteopathy therapist. She somehow looses the muscles around and after session the pain is gone. Maybe you find some near you.

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                    • #11
                      Re: Embarrassing question

                      Girl...bless our poor hubbies also!! I am so thankful for mine. Always keep in the back of your mind that this will get better. And like I said before, never be afraid to ask questions. I would be lost without this forum. My goal is to go into remission and come back to tell about it!!! I also want to be able to help others as best I can...just as others have helped me. I am forever grateful to this site, my family, and above all God. I use to question why, but now I don't. I pray for healing and for His will to be done (however he chooses to use me). Big hugs being sent your way!!

                      Oh, by the way, I am also on the hydroxyzine (25 mg) , elavil 25 and Elmiron ( 2 at night and 2 in the am). I am finally getting relief from the elmiron, so don't give up too soon. I hope to decrease the other meds as soon as I get through this current hurdle. Right now it is not possible.

                      Good luck with everything. It's a lot to take in...it takes a lot of diligence!! But you've got this!!!

                      Comment


                      • #12
                        Re: Embarrassing question

                        Hi it does sounds nervey doesn't it? Can you up your ami ?
                        Progesterone flares me too.
                        I wonder why there was swelling there though? Was it accidently injured when your uro was poking around? Had you had sex just prior?
                        Never worry about too much information here, we are all in the same boat.
                        I hope you get answers soon
                        UTI 3/2015
                        IC ,PFD
                        prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

                        Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

                        Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


                        Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

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                        • #13
                          Re: Embarrassing question

                          I think the swelling is from the testosterone or progesterone. I think I remember my first doctor putting me on a testosterone and a progesterone cream and telling me I may experience swelling in the genital area. And I did! Maybe good ole trusty google will let you know.

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