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  • Laproscopic Hysterectomy

    Last Tuesday I had LH. I decided to do this because I wanted to take a higher estrogen level. When I took more E, it would cause polyps to bleed.
    I found by accident that if I carried about double an estrogen load all my VV symptoms dissapeared. since I had a uterus full of fibroids and polyps anyway, I finally just threw in the towel so I could take more estrogen. My polyps did not grow on a dose of 0.1 mg of estradiol, and the Mirena IUD.
    What was interesting here was the biopsy. Years ago I had a bad case of Endometriosis and refused a Hyster then as well as conventional medical treatment. I went to the Chinese physician, and took a Macrobiotic diet. This regimen completely shrunk the Endo lesions, pain and stopped the heavy bleeding. I was normal for many years.
    I have never had any abdominal procedures, but the Doc said she found a whole bunch of adhesions that were all dried up which she had to peel away from various spots. I believe this is the remnant of the Endo lesions. Even though the aggressive Endo was cleared up, it left internal scaring. It is possible these adhesions caused a lot of pelvic pain. It will be interesting to see how things go during the next six weeks.
    Like all ICers most down South pain I blamed on my bladder, until I found out how much pelvic floor disorder causes a lot of pain that is not from the bladder. Now I also understand that the body does react in synergy, what happens in one place shows traces in another.
    I have also read several studies that linked IC with Endo, so I am wondering if it may not have been the original trauma that started the downward spiral?
    Sammi

    Sammi

    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)

  • #2
    Hi Sammi,

    I agree with you completely. I had a hyst three years ago and I have endo and adhesions. For a long time my doctor and I thought these were the sole causes of my pain. But then found out about IC, got tested, and voila! So, absolutely I believe these are all interlinked.

    Get well soon!
    Moonheart
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #3
      Now that you guys say that, I realize that I also had three laps (which I really needed to have -- one to remove the appendix, one to remove the gallbladder, and one to remove a benign tumor on my fallopian tube) before developing IC. So I may very well have adhesions. I know something is happening, because I've been getting good treatment for over two years and I'm not much better. I'll have to ask my Dr. about it. Thank you both for sharing your thoughts.
      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


      • #4
        Two Week Check up

        Had my 2 week check up today and read the biopsy report. Doc thinks i am healing just fine and the pain and pelvic spasms I am having on the rt. side are due to the large number of adhesions they removed in that area. I think the pelvic spasms are due to the nerves being cut and hope to heck they do heal and quiet down or that just adds to pelvic floor disorder.
        After two weeks my main complaint was sleep disruption and she gave me a RX for Ambien which I have never taken a sleeping pill.
        I am feeling well, no bleeding, had a hormone tests to be sure the level from the pellets is still good and high. Main problems are rt. side pelvic spasms, peeing about every 2 hours, not sleeping. My poor bladder seems devasted and hysterical at losing that poor uterus. I think it needs valium.
        Doc says to give all these symptoms at least to the six week mark before I get worrried about them. As for IC, it hasnt effected any pain that way.
        Found out the MIrena IUD did keep the uterine lining down, it was only 2.2 which is very tiny. So, this is a good option for a non systemic progestin or BC method if your bladder cant stand progesterones.
        Nothing new on biopsy, lots of fibroids, adhesions, uterus because it was enlarged pushed itself up against an intestine and had to be peeled off.
        Glad I had it done, now have a much better E level, and interesting enough have not had one single vulvar flare since I have doubled the E.
        Sammi

        Sammi

        Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
        Diagnosis: IC, PFD (both in remission)

        Comment


        • #5
          My poor bladder seems devasted and hysterical at losing that poor uterus. I think it needs valium.
          Sammi, you made me laugh out loud with this little tidbit.
          http://www.TheCraftyEwe.etsy.com

          Comment


          • #6
            Sammi- Glad to hear you are doing well. I can actually say my bladder issues are much better since my hysterectomy. I had my hyst. in two stages. First, they took my left ovary and uterus in sept. 2005. Then in Feb. 2006 they took my right ovary. In the first surgery, my left ovary was stuck to my bladder with endo. During the second surgery my intestines were stuck to my bladder with endo. They ended up doing a bowel re-section cuz it was so bad. I had about an eight week remission of my bladder stuff after each surgery. Got off all my meds and everything, then it reared its ugly head again. However, I am not near as bad as I was before surgery.
            Are you using hormone pellets? The worst part of the hyst. for me was finding the right combo of HRT. I spent a lot of time on hystersisters.com Finally, thirteen months later I may have found the combination that makes me feel balanced. I have tried everything except for estrogel, femring and the pellets. I use Vivelle .075 and change the patch every 72 hours. When I apply the new patch, I leave the old one on for twelve more hours. That way while each patch is not delivering its optimum level they kind of balance each other out and keep me from having highs and lows. I also change right before bed so I don't notice my levels being off at all. Then when I wake up in the morning, i pull off the old patch because by that time the new one is ramped up and ready to go.
            Unfortunately, I feel like the endo is returning so I am considering going to the endo center in Atlanta for a lapex laparoscopy. My doc told me after my surery that there was no way he could get all the endo. However, I think it may have more to do with his confidence or skill level. The team of surgeons at the CEC have dealt with many cases of bladder endo excision. I took no HRT for three months after my surgery and then did only .0375 to starve it out.
            Well, anyhoo I hope you feel better soon. I would love to hear any information you have on the pellets if that is what you are doing for your HRT. -Vicki
            Blessings and Hope

            Current Meds.
            OFF MY MEDS
            Vivelle Dot: .10 changed every 72 hours
            Compoounded Progesterone 25mg/night

            Current Supplements
            Hydroeye: 2 pills AM

            Diagnosed
            1995: Endometriosis
            1998: Interstitial Cystitis
            2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
            2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
            2012: Laparoscopic Removal of Adhesions and Staples

            Comment


            • #7
              Vicki

              That was a very interesting post on the Endo/bladder. Your .75 patch is probably keeping your serum level in the 100 range which is the minimum needed for bladder, bone, brain health. However, with a history of Endo, I would be very hesitant to suggest pellets. Pellets give almost double to one and half times more estradiol or blood serum levels in the 200-400 range. This may be too high and stimulate your Endo. At these levels you have a range of a healthy, menstruating female, which may be too high for your health with the Endo.
              when I was taking the Chinese cure for Endo they explained it to me as an immune system overload. They take you off everything that could possible be a body irritant, and let the body heal intself. Sort of a Oriental Dean Ornish Diet or a allergy elimination diet. Only they eliminate all at once and add back very gradually.
              As time goes on I see over and over they were so right about food additives, and the horrible manner the food chain distrubution system handles things. Dont think chicken is safe either. Chicken was considered one of the worst foods for Endo, because it was full of Samonella, hormones. Due to a chickens small size, they felt was the most contanimated source out there.
              Sammi

              Sammi

              Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
              Diagnosis: IC, PFD (both in remission)

              Comment


              • #8
                Hey Sammi-
                It is good to know about the pellets giving high levels. I notice if I go up to a .10 patch my belly bloats and hurts as though the endo is returning. It also happens if I put the patch on my hip which gives 20% than if it is used on the tummy.
                I tried the bean, veggie and brown rice diet. I did it about ten days and my bladder got really bad. So, I am considering doing a liver cleanse. I have read that chinese bitters and coptis are supposed to cleanse the liver. However, you never know if that is a for real thing or just a post someone placed to sell you something off a website. I did read about a liver cleanse where you squeeze 10 lemons into 1 cup of oil olive and drink. It is supposed to cleanse the liver as well. I tend to trust that a little more since on one is making any money off of it. At this point, I'd squeeze and drink about anything if I knew it would end my pain without having to have another surgery.
                Interestingly enough, my mom had a bowel obstruction from an endometrial tumor in her forties. They removed part of the bowel like they did to mine. She never had an pain associated with the endo or periods until her episode when they had to remove part of the bowel. However, they had to go back in a few years later to remove more as adhesions formed and caused another obstruction. She has had diharrea ever since for about twenty-five years now.
                Well, I hope someday someone will figure this mess out! I feel sure there is a genetic component as my sister has had a lot of ovarian cysts and finally had a hysterectomy. Both my mom and my sister have bladder frequency and urgency just not pain like myself. Thank God I never had a daughter. I wouldn't want to pass this mess on down to anyone else. -Vicki
                Blessings and Hope

                Current Meds.
                OFF MY MEDS
                Vivelle Dot: .10 changed every 72 hours
                Compoounded Progesterone 25mg/night

                Current Supplements
                Hydroeye: 2 pills AM

                Diagnosed
                1995: Endometriosis
                1998: Interstitial Cystitis
                2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
                2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
                2012: Laparoscopic Removal of Adhesions and Staples

                Comment


                • #9
                  Musing

                  You know Vicki, I have been thinking lately that a lot of these medical problems originate with brain chemistry and then cascade down to other levels and cause pre dispositions to disease. For example, I was having a lot of problems with what I thought was nocturia. Turned out I had sleep apnea.
                  But, even with the device I still wasnt sleeping properly. I finally asked my sleep doctor for a medication that replaces the brain chemical GABA. I am on a very, very low dose. When I started taking that; the problem settled down (2 wake ups a night, one at 3 and one around 6:30). I also noticed less physical muscular tension, even less peeing or OB. So, the problem was either due to a kink in my system, or just getting older, my brain chemistry changed, and like hormone replacement, perhaps if you can determine what is going on with your main brain chemistry, you can lessen symptoms or even head off diseases?
                  Sammi

                  Sammi

                  Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                  Diagnosis: IC, PFD (both in remission)

                  Comment


                  • #10
                    I did a sleep study about three years ago and they did not come up with anything. I am glad to know you have found something that helps you. -V
                    Blessings and Hope

                    Current Meds.
                    OFF MY MEDS
                    Vivelle Dot: .10 changed every 72 hours
                    Compoounded Progesterone 25mg/night

                    Current Supplements
                    Hydroeye: 2 pills AM

                    Diagnosed
                    1995: Endometriosis
                    1998: Interstitial Cystitis
                    2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
                    2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
                    2012: Laparoscopic Removal of Adhesions and Staples

                    Comment

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