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  • Questions for those with Endometriosis

    I am really struggling with what to do. I am having a lot of pain and my gyno says it could be endo. She did an ultrasound in her office a few days ago, and said she didn't see anything like ovarian cysts, etc. Of course, a laparascopy is the only way to know for sure. I have some questions:

    1. My pain comes and goes with no rhyme or reason. One day, it'll be lower right abdomen, then maybe that night, it will switch to the other side. Or lately, it's been upper right abdomen, then within the same day, it switches to the other side! That makes no sense to me! I did start my period yesterday, so it has been a little more annoying. Is this type of pain moving around all over typical of endo?

    2. I am 43 years old and my periods have gotten a little strange, but still fairly regular. My gyno says I'm probably not ovulating every month because a few days ago, she said my uterus lining was thicker right before my period, which supposedly means I'm not producing as much progesterone. Is it common/normal for a woman my age to develop endo?

    3. My gyno mentioned trying progesterone to treat the endo (if I have it). I am really scared to try any hormones because of my IC. I have been doing so well for 9 months and I really fear hormones will mess me up. I always have a small IC flare around ovulation, so my IC seems to be hormone related. Has anyone had success with hormone treatment for endo without messing with their IC? I know the BCP is another option, but because I suffer from migraines, she is hesitant to try them on me.

    4. Finally, my biggest fear...laparascopy. I was reading about it this morning and didn't like what I read. First, and foremost, I fear them removing endo from my bladder area, and triggering my IC. I'd rather live with endo pain (I THINK), than have a long IC flare. Could I tell my dr NOT to touch my bladder area? The pain isn't around that area anyway. Also, I read that the recovery time is at least two weeks. Geez, that's a long time. Would I have to take that much time off work? And I know I would also have to have a catheter. Well, it goes without saying that catheters can irritate IC. The thought of waking up with one is scares me badly.

    I'm really a bit on the down side and worried. Here I am doing SO well with my IC for so long. I finally feel like I have it under control and now this happens. I really don't know what to do.
    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

  • #2
    Re: Questions for those with Endometriosis

    I am new here and I am still waiting for a proper diagnosis. I have burning ....pelvic pains.....pains after urinating at night and pain after eating all my favorite foods... Like you I had Endometreosis for years starting in my 20s it was awfil my periods were painful and then I started having pains with my bladder the the GYN back then said I had endometreosis on my bladder.(?). So after a few more years into my late 30s he talked me into having a complete hysterectomy. I was really scared but I did not want to live with the pain anymore. After the hysterectomy I had to wear a catheter for a week I hated it. And through the years I still have pain and he recommended a pelvic sling twice which I declined .

    I finally went top see a urologist last month and she said I have bladder spasms and gave me vesicare. Well that did not help it made it worst. It made me constipated and made my throat hurt. Next week I go back to see her and I am very anxious to see what she says for me to do.

    BTW when i had my hysterectomy I had it through the abdomen and it was a 2 week recovery.

    Also before I had the hysterectomy for the endometreosis he put me on the hormone lupron...it was awful it gave me migraines and made me sick he insisted i had to take it for 6 months to get rid of the endometreosis and it did not work.

    After I had my hysterectomy he wanted me to take hormones but I refused and i am glad I did.

    Now I am dealing with bladder pains ....burning and pelvic pain. I have only seen this urologist once but the vesicare she gave me I think worsened it. it took me 2 months just to get into to see her/

    As far as the recovery time being 2 weeks I felkt fine after a week after they removed my catheter. I had a friend who had the same procedure and she went back to work after 3 days but she did not have to wear a catheter.

    maybe you need a second opinion?

    Good luck.
    had complete hysterectomy for endometreosis
    IBS
    Migraines
    Diagnosed with Panic attacks when I was 19 -Klonopin as needed
    Triggers so far: lemon, wine, vinegar, spicy foods and yogurt and tea
    just started taking prereleif-helps a little
    just started taking marshmallow root-helps a little\
    vesicare made me constipated and made my throat hurt/stopped
    Marshmallow tea made me worst/stopped
    Mutibright vitamins
    DH Aloe Vera-some releif
    Bladder-Q gave me a migraine -threw it in trash
    Use coconut Oil-some relief
    Baking soda and Water-some relief
    Trying to stay on IC Diet
    just started taking Uribel-seems to help
    75mg of amitriptyline

    Comment


    • #3
      Re: Questions for those with Endometriosis

      Jane: I had laparoscopic surgery to remove my gall bladder and was back to work eleven days later. I haven't had any lasting problems. I suggest you talk with your doctor about your concerns about your bladder and the lap surgery.

      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.

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      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


      • #4
        Re: Questions for those with Endometriosis

        I have had two laps for endo in the past and all doing stuff around the bladder..... No effects directly from those procedures. And been through an abdominal hysterectomy.
        Endo is like IC, they really don't know what causes it and some women don't have pain and they get some operation done (related or not related to endo) in their 40s and find out there was endo everywhere.
        And yes endo pain moves around, since it hits different nerves when it acts up. So you get a pain in one spot and then you get pains in another spot and wonder what the heck is going on.
        Really if you want to find out for sure what is causing this other pain then you need a lap done and risk having a flare after. Or just live with the pain and hope it goes away.
        Sorry to be blunt but thats how a doctor put it to me. If you had appendicitis and needed surgery you wouldn't tell them not to do the surgery for risk of a bladder flare.
        Just make sure you have your rescue meds for afterwards. If you feel your in remission now, you will get back to it.
        I know i was blunt but its true. Theres a lot of unknowns with endo, there is no definite answer about when/why it happens. In my case (at time of hyster) it shouldn't have happened but it did. And really even if its peace of mind to get the lap done, its worth it since you will be wondering for a long time whether you should have the lap done or not.
        Hope this answered some questions.
        And for my i loved one of the synthetic progestins, and still love it. Calms my bladder down like no tomorrow. But i am apparently the only one where a progestin calms down the bladder.
        So you might find one that helps you, it is possible. All the progestins are different and diffferent synthesis to make them so i think thats why they effect different people in different ways.
        Anyway.....
        Hope you come to a decision and keep us posted
        Have had ic symptoms for 18 years, officially diagnosed 15 years....treatments--herbs, antidepressants, anticonvulsants, overactive bladder meds, painkillers, instils........
        Had endo but had to have a hysterectomy, now menopause yay
        Vulvadynia, ibs, acid reflux, raynauds, TMJ, and suspected auto-immune disorder of some kind
        Other things, heart defect and scoliosis

        Comment


        • #5
          Re: Questions for those with Endometriosis

          And with recovery from an uncomplicated lap (not extensive endo so not a lot of cutting i mean)
          I was up and about the week of. You do want to take it easy but its not as bad as a hyster.
          So you will need to take some time off but you won't be in bed. You have to move around right away to get the gas in the belly to move around.
          So your not bedridden during this time.
          Have had ic symptoms for 18 years, officially diagnosed 15 years....treatments--herbs, antidepressants, anticonvulsants, overactive bladder meds, painkillers, instils........
          Had endo but had to have a hysterectomy, now menopause yay
          Vulvadynia, ibs, acid reflux, raynauds, TMJ, and suspected auto-immune disorder of some kind
          Other things, heart defect and scoliosis

          Comment


          • #6
            Re: Questions for those with Endometriosis

            Boshala, thank you for responding. I really would like to avoid a hysterectomy if possible. A catheter for a week?? Oh, I would hate that. Well, at least I think I would hate it. I've never had a catheter except with child labor and I had an epidural so I didn't feel it. I am fearful of them, though, that's for sure. Yeah I've never heard anything good about Lupron. I don't even know if I have endo yet, but I know I have pain that could be. I wish there was a way to diagnose without a lap. As for Vesicare, I took it for about 2 weeks before it gave me awful retention. It also dried me out like the sahara desert and didn't help me. I'm sorry you're having such pelvic discomfort. I hope you find something to help you.

            Donna, good to know the lap didn't cause you any lasting problems. :-)

            Steff, glad your lap didn't affect your IC too. I've really only been having mild pelvic pain (mostly near ovaries) for the last few months, like maybe a few days off and on during the month. But this past month, it's gotten worse, especially with PMS. I see what you're saying about the pain hitting nerves and moving around, but literally, my pain moves ALL around within an hour now! I am on day two of my period, so it could definitely be worsening things. I finally had to break down and take Naproxen about an hour ago. It did help. The not knowing is bothering me as much as the pain, so I may just have to have a lap to get an answer, like you said. I am going to wait another month to see how the pain is after my period.

            I don't know if my IC would get worse or not with progestins. I guess you never know until you try. My IC tends to flare every month around ovulation for a few days, and that's when estrogen is supposed to drop, so who knows. After a few days, it gets better again. And I rarely have IC symptoms around my period.

            Thank you for your advice. I know that my uro asked me on my first visit if I had endo. He said they are very closely related.
            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

            Comment


            • #7
              Re: Questions for those with Endometriosis

              I am sorry i was blunt but it is the only way to know for sure what is causing the pain.
              And the worry will flare you more than the lap would.
              Its good to make sure of no adhesions and such too.
              And you never know with progestins since i flared with the one in alesse but love the one i am on now.
              They are all different and people react differently to each one.
              Its just strange that way.
              Theres a new one out just for pain for endo and it didn't flare me and its synthesized in a totally different way so it might be good for you to try, called visanne.
              I just want to help you, i can see your in pain and frustrated and just want answers but scared to get them as well as going through diagnostic tests is stressful in itself.
              I am just so sorry you are dealing with this and i am really hoping you try to get real answers soon.
              Maybe try the visanne or try the progestin only pill, its a low dose so it will be easier to try.
              I really hope you get answers and some relief soon.
              Keep us posted
              Have had ic symptoms for 18 years, officially diagnosed 15 years....treatments--herbs, antidepressants, anticonvulsants, overactive bladder meds, painkillers, instils........
              Had endo but had to have a hysterectomy, now menopause yay
              Vulvadynia, ibs, acid reflux, raynauds, TMJ, and suspected auto-immune disorder of some kind
              Other things, heart defect and scoliosis

              Comment


              • #8
                Re: Questions for those with Endometriosis

                As I think back now to 10 years ago it was after they did they lap that they discovered I had Endo scattered all over my female organs and including my bladder. I did not need a catheter after the lap . However after the complete hysterectomy I needed a catheter for a week and i am glad I had it done because my monthlies were horrific form the time I was a teenager. I understand you wanting to avoid a hysterectomy I waited 10 years to have one after they did the lap and told me I had endo. My family kept begging me to have a Hysterc and it made me mad. I also had PMS and I took Naproxyn.

                Good Luck to you i'll keep my fingers crossed. i know you are scared. I was scared back then too and i am scared now.
                had complete hysterectomy for endometreosis
                IBS
                Migraines
                Diagnosed with Panic attacks when I was 19 -Klonopin as needed
                Triggers so far: lemon, wine, vinegar, spicy foods and yogurt and tea
                just started taking prereleif-helps a little
                just started taking marshmallow root-helps a little\
                vesicare made me constipated and made my throat hurt/stopped
                Marshmallow tea made me worst/stopped
                Mutibright vitamins
                DH Aloe Vera-some releif
                Bladder-Q gave me a migraine -threw it in trash
                Use coconut Oil-some relief
                Baking soda and Water-some relief
                Trying to stay on IC Diet
                just started taking Uribel-seems to help
                75mg of amitriptyline

                Comment


                • #9
                  Re: Questions for those with Endometriosis

                  Steff, I appreciate you "telling me like it is". :-) No use beating around the bush. And you are SO right about the stress and worry causing me more problems with my bladder than the lap might. Today is day three of my period and I woke up with pretty bad menstrual cramps still, although it was better because it was just my uterus, not all over. I took some Naproxen again and they are better. I am going to see how this month goes and my next cycle before making any decisions, since I'm fairly new to this kind of pain. And thank you for telling me about visanne. I will make a note of it and ask my gyno about it.

                  Boshala, I'm glad to hear you didn't have a catheter after your lap. That is one of my big worries. I would love actually to have a hysterectomy and be done with my periods for good, but that's a pretty big step for me. I was hoping to skate through perimenopause, but it's not really working out that way. :-)

                  I'll keep you updated, thanks!

                  Jane
                  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

                  Comment

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