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Post by smithbr1118 on Aug 13, 2013 13:01:19 GMT -5
Good luck Willow!!! I'll be thinking of you.
I have a question for you, when did your period return after the Lupron wore off? I'm assuming mine will return in November or December; if I don't get prego (need a man for that) I'll be opting for a hyster also as soon as the pain returns to an "8" which I'm thinking will be in January or February.
Keep us updated. Your experiences are very similar to mine, thank you for being very detailed about everything; it's always very comforting to know that you aren't the only one going through this stuff.
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Post by willow82 on Aug 13, 2013 19:38:46 GMT -5
Mine never did, I immediately went back on strong BC to suppress my cycles, every doctor agreed (even the moron I fired) that I should not have periods. Unfortunately the higher level of estrogen in Seasonale causes me EXTREME pain, it did when I was on Lupron, and did again right away when I started it post Lupron. That's the reasoning for the partial hysterectomy, it looks like I have adneo. Also I bleed like mad on progestin only drugs, and low estrogen BC, not having a uterus will greatly improve my ability to take progestins. I'm starting Visanne the same day as surgery. Since I will still have a cervix I will still bleed some, but as of tomorrow no more adneo, no more endo, no more scar tissue!
Good luck with the Lupron, it is good to start planning now what you want to get out of Lurpon, and what you want to do afterwards. Lupron does nothing to eliminate endo, it just in the best case scenario makes the cells slow down while you're on the injections. It's good to identify what the next course of treatment is going to be, and if that fails what the plan is.
Also your pain may come back right away, mine would always start to creep back the last week of the shot, as soon as my last shot was up all the pain, inflammation, digestive problems were back. The only difference was that my legs and back didn't get as bad as before thanks to PT.
Since I had a pretty good response to Lupron (compared to the madness when I'm on Seasonale) my pain had to be endo or adeno, since I had aggressive excision last October, Dr. Belizan thinks that ups the odds for adneo, especially since there was no improvement with the Seasonale post Lupron.
Lupron is very taxing medication on the body, get everything you can out of it. Track what symptoms improved when on it, how much, and what you want to do next.
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Post by willow82 on Aug 15, 2013 12:29:52 GMT -5
I had my LSH, with Dr. Belizan yesterday and I am doing amazing! My first surgeon DID get all the Endo, I did have a new spot on my right ovary, and new adhesions on my ascending and sigmoid colon. Of course he took all that crap out!
Dr. Belizan takes minimally invasive surgery to a whole new level! I have NO gas pain at ALL, no bleeding! I have about a quarter of the swelling as I did from my first Lap, no worse than one of my bad bloat days from the past month. Though I am sore as should be expected! I am much more alive than after my first lap, and already ALL of my digestive problems are gone! No more nausea, no more shakes, horrific pain, cramping, spams after going #2. No more horrific digestion pain at night, no more pain after eating!
I won't know whether or not I had adenomyosis until my post op next Thursday, though regardless it seems clear my uterus was a huge source of my problems. The colon adhesions definitely didn't help, but it doesn't sound like they were dense enough to entirely be the source of my digestion issues.
I also started Dienogest, Visanne, yesterday for ongoing Endo suppression.
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Post by nibletz on Aug 16, 2013 15:57:54 GMT -5
Hey willow
So glad it went well and that ur doing good babe so happy for you hun keep resting xxx
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Post by willow82 on Aug 19, 2013 0:27:21 GMT -5
I barely have any belly swelling at all now, I love food again! Seriously I can cook a meal and just get hungrier, first time in months! I haven't had that normal reaction to food since maybe the second week of June? Mid May? It hurts less to bend, move, walk, and just about everything than before surgery. I am still really gassy, but I think that's still the surgery and anesthesia. I'm already having less problems with it than before surgery, and an easier time passing it. My incisions are sore, and my belly gets sore if I have a lot of gas, need to pee, and is sore after I go. Though it's a passing thing. I'm already on less pain medicine than before surgery.
It is really incredible I feel like a human being again! 4 days after surgery and I can drive, take reasonably long walks at the harbor, cook, clean, do my makeup!
I could probably go back to work tomorrow, but I'm not insane. My body has been to hell and back in the past 12 months with very little down time. I'm going to take the full 4 weeks so I can fully heal. Also hormonely I'm going through the wringer, just a month and a half off Lupron, several days off of high estrogen BC, oh had a hysterectomy! and just started Visanne. Other than being in love with the air conditioner I'm not having any hormonal symptoms, and it looks like my ovaries did not shut down, but the last thing I need to do is stress out my system unnecessarily.
Though honestly I feel like I could take on the world compared to where I was a week ago.
I am not even sure if I am going to need much PT after recovery is done, but am still going to go to reduce the risk of adhesions, and tune up my pelvic muscles.
I still can't quite believe that I have my body back, FINALLY!
Though on a darker note I am still really upset by some of the hoops I had to jump through to get where I am. I am still incredibly disappointed with the hospital system that shall not be named. After my post op I will be writing lots of letters and consulting that wonderful lawyer service I signed up for at work. I have no interest in money, but want to do everything within my power to prevent another woman from being treated like I was. When I think back 2 months, to the beginning of this thread, the sheer terror is still soooo raw. I had a doctor push me into freefall and then not do anything about it.
If it wasn't for this board, and those who recommended Dr. Belizan, my family, my amazing employer, my boyfriend, what was left of my wits and sheer willpower by now I would have lost everything. I don't even know how I was functioning the 2 months that preceded this surgery.
I am so very very thankful that I got a good resolution.
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