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  • menstruating and ic

    Exactly a week before my period I go into the worst flare. I also can not wear tampons AT ALL. as soon as i put one in it feels like its piercing my bladder. Does anyone us go through this? any suggestions on relieving the cramps along with the bladder pain?
    shannon

    previous meds:
    Elmiron 2 3x a day
    Hydroxyzine
    Elavil
    hydrocodiene for pain

    been med free since september 2010

  • #2
    Shannon I think most IC'ers is worst during menstruation time. Relaxing, heating pad, pain pills helps me. Tampons do sometimes cause more problems, best if you can stay away from it and just use pads.

    Hope you feel better soon,
    Sending hugs, Trishann

    Comment


    • #3
      Shannon,

      Has your Dr. ruled out endometriosis? Just wondering. Trishann is right...most ICers do have their worst pain and IC symptoms right before and for the first few days of their periods. But, endo could also cause the symptoms you describe. Just to be safe, it would be a good idea to have a talk with your Gyno and make sure that it is the IC, and not something else going on too. Have you had a pelvic exam since these symptoms began? Sometimes, (though not often), endo can be detected during a pelvic exam. However, for the most part, it is usually takes laproscopic surgery to find it to make an accurate d/x.

      Though your symptoms are most likely IC related, it still could be something else and other causes need to be ruled out to be for sure.

      I hope that whatever the cause of your pain, you find a Dr. soon who will treat you compassionately and give you something to help with the pain.

      Hugs,
      Amy

      Comment


      • #4
        I go through the same thing. I found that using the OB tampons without the applicator I can get the tampon in far enough so I don't feel it at the bladder. Never knew anything about them until someone told me about it on the message boards. The thing I use for the cramps is Naproxen. 500 mgs. I get a perscription from doctor for it. Have you tried Midol? I used to use that but the cramps got worse with time.

        Comment


        • #5
          I think Trishann, as usual, has it right. Heat, rest and relaxation. I also find that a prescription muscle relaxant is helpful for cramps.

          The last time I used a tampon, I went into a flare that lasted over two years. Never again!
          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
            Originally posted by ihurttoo View Post
            Shannon,

            Has your Dr. ruled out endometriosis? Just wondering. Trishann is right...most ICers do have their worst pain and IC symptoms right before and for the first few days of their periods. But, endo could also cause the symptoms you describe. Just to be safe, it would be a good idea to have a talk with your Gyno and make sure that it is the IC, and not something else going on too. Have you had a pelvic exam since these symptoms began? Sometimes, (though not often), endo can be detected during a pelvic exam. However, for the most part, it is usually takes laproscopic surgery to find it to make an accurate d/x.

            Though your symptoms are most likely IC related, it still could be something else and other causes need to be ruled out to be for sure.

            I hope that whatever the cause of your pain, you find a Dr. soon who will treat you compassionately and give you something to help with the pain.

            Hugs,
            Amy
            Just an FYI, endo cannot be detected with a pelvic exam, or any imaging studies (MRI, CT, U/S, etc). The only way to diagnose is with a laparoscopy. I have read that endo and IC often occur together (my endo was dx'd first), which is one reason my docs decided to look for IC. I would definitely ask your GYN about it.
            32 years old

            former Med/Surg RN

            endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008

            Comment


            • #7
              Originally posted by Breezy1218 View Post
              Just an FYI, endo cannot be detected with a pelvic exam, or any imaging studies (MRI, CT, U/S, etc). The only way to diagnose is with a laparoscopy. I have read that endo and IC often occur together (my endo was dx'd first), which is one reason my docs decided to look for IC. I would definitely ask your GYN about it.
              I had heard that occasionally it can be found during a pap smear, (though not often.) I agree that the vast majority of the time it is found during laproscopic surgery. (And that even if it wasnt detected during a pap smear, it certainly couldnt be ruled out.) The only way it can be ruled out is by doing laproscopic surgery. But regarding the pap smears, this is the link of where I read that it sometimes could be detected during a pap smear. http:///www.ivf.com/ch10mbpg2.html Scroll down to the section titled "Fertility Factor #4 Tubal Factor. It is in the 3rd paragraph.

              But, either way, we agree that Laproscopic surgery is the way to go if it is suspected. Everyone I know who has Endo, (myself included), was d/xed thru laproscopic surgery. Since my Uro and Gyno went in at the same time and did the cysto/hydro and laproscopic surgery, they found the endo and IC. (The endo had grown thru my bladder.)

              For more information about Endo and the symptoms it can cause at different sites of the body, this is a great link: http://www.unmc.edu/olson/Newsletter/news2-4.pdf It describes all the symptoms you can get with endo at different locations. You will see how strikingly similar some of the symptoms are to IC. It is no wonder it is hard to tell the difference between IC getting worse, or endo coming back!

              Anyway, it probobly truly is IC that is causing you so much pain. Almost every ICer I have talked to has said that her pain skyrockets right before and for the first few days of her period. It's bad enough having the period OR IC, but it is horrible having both!

              Hugs,
              Amy

              Comment


              • #8
                I get that every month.......my bladder feels like it is on fire........my daughter gets horrible cramps from endometriosis..........we always joke that wish someone would kick us in the belly to get our periods to start because we feel so much better afterwards.........

                What helps for me is more sleep..........epsom salts baths.........and celebrex........
                Julie Beyer, MA, RDN
                IC Dietitian, Patient Advocate, Speaker, & Author


                Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                ........ ........


                Other IC Diet Resources:

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                *Let's Connect!*

                Comment


                • #9
                  I am on my period now and am miserable and in a huge flare. I am sure I have endo, but have not went through a lap to confirm it as I have stomach motility issues and dont want to have any type of surgery on my stomach unless it is absolutely nessasary or an emergency.( this was the advice my GI doc gave me)
                  When I had a cyctoscopy done back in December, I was dx with IC. The urogyne saw that I had IC without even doing a hydrodistention. I would not do the hydro after I researched it, so I told him to just do the cystoscopy and he did. I insisted on being sedated for the cystoscopy as the last in office one I had was extremely painful.
                  Anyhow, I asked him if he thought I may have endo in my bladder and he said no, that he would have seen it during the cystoscopy. Is this true?
                  He also said I wold bleed out what looks like coke from my bladder during my periods if I had endo in there.
                  I have been to a total of three doctors for the IC, and actually am going to see #4 today. I have an appointment with a new urogyne and I pray he is better than the rest I have seen.
                  I know I should probably do the lap to see how bad the endo is if I have it, but I just dont want to go through anymore than I have to or cause any worse problems. One thing I have learned since being sick with so many things is, never let a doctor try and convince you to do something that you feel is not right. ALways go with your gut feeling.
                  Jen

                  Comment


                  • #10
                    What is this Endo you are all talking about could someone please explain it to me? My period started last night I have extreme pain, can't walk just breathing hurts before and during my period WHY! I use a walking stick most of the time to brace myself when the big pain surges hit and I find walking really hard. I have only been talking to others with this condition for a few months but have had it since birth, I am trying to work out weather my condition is servere or am I just complaining?

                    Comment


                    • #11
                      It is endometeriosis. Doubt that is spelled right. I'm sure someone else can explain it better then me but it is were tissue grows around other organs down in the ovary area. They say if you have bad periods (this is what I was told) then you have it but I don't have it and I have always had bad periods.

                      Comment


                      • #12
                        I'll try to explain what endometriosis is:

                        The lining of the uterus is called the endometrium. For reasons not fully understood, in some women, this tissue grows outside of the uterus (they think *one* cause might be backflux through the fallopian tubes). It implants itself within the pelvis, in the cul de sac, on the outside of the uterus, on the ovaries, tubes, on the bowel, etc. It can be found on the kidneys and ureters. It has been found far away from the uterus (like on the lungs or brain) in very rare cases. It is documented in stages/grades, mild to severe. Mine is mostly mild, with a few implants in the cul de sac (the area behind the uterus); in severe cases, it is found all over the pelvis/pelvic organs. I will say now that THERE IS NO CORRELATION BETWEEN THE EXTENT OF GROWTH AND THE SYMPTOMS. Patients with mild endo can have severe pain, patients with their organs adhered together can have virtually no pain.

                        Every month when you get your period, this tissue becomes inflamed. Since it has no where to go, it simply irritates the surrounding tissues and nerves. It builds up scar tissue over time. It causes severe pelvic pain, bloating, pain with intercourse, bowel symptoms, etc. It is a cause of infertility in some women.

                        It can only be diagnosed with a laparoscopy, which allows the tissue to be physically seen by the surgeon. It does not show up ultrasounds, CT scans, etc. The laparoscopy is done based on symptoms. At the time of surgery, this tissue can be ablated. Often, it grows back, the question is how soon. Birth control pills are routinely used as a first line of treatment, to minimize growths. Medications such as Lupron Depot are sometimes used as well, which put the body in to a temporary menopausal state, in which the goal is to halt the growth of endometrial implants. This is usually done by injection once a month, for no more than six months (it causes bone loss, as does "regular menopause"). Hopefully, the relief that it may provide will last beyond the last injection (for me, this therapy failed; I continued to get my period on it, which is rare!). It also carries side effects such as hot flashes, vaginal dryness, etc. Prescription NSAIDS can be used, and in some cases, narcotic medications are necessary for pain control.

                        That's all I can think to explain at the moment, I hope it helps! Do a Google search for endometriosis, you will find a lot of information. You can also do a search for endometriosis and IC, I found a lot of information that way, as well.
                        32 years old

                        former Med/Surg RN

                        endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008

                        Comment


                        • #13
                          Originally posted by waterflow View Post
                          It is endometeriosis. Doubt that is spelled right. I'm sure someone else can explain it better then me but it is were tissue grows around other organs down in the ovary area. They say if you have bad periods (this is what I was told) then you have it but I don't have it and I have always had bad periods.

                          It is definitely not a "given" if you have bad periods, it is just one possible cause.

                          I had bad pain from day one; my first GYN as a teenager would not consider it as an option. Her theory? "You're too young for that." My next doc (I switched after that comment!) waited until I was under his care for six months, then did the lap...and sure enough, he found it.
                          32 years old

                          former Med/Surg RN

                          endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008

                          Comment


                          • #14
                            thanks so much everyone you really helped. I definently will be making an appt. with a gyno to make sure its not endo. thanks for the support!
                            shannon

                            previous meds:
                            Elmiron 2 3x a day
                            Hydroxyzine
                            Elavil
                            hydrocodiene for pain

                            been med free since september 2010

                            Comment


                            • #15
                              Actually, I'm just like swedemily! I get worse right before my period, but on the first day of my period I have no pain. It's like my symptoms magically disappear. Seriously, it happened again this month and I was just going to start a post about this myself because it seemed so strange.
                              mom_in_ma

                              Comment

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