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Post by 1234 on Sept 13, 2011 20:20:47 GMT -5
Jess, I'm sorry, but I'm so glad you feel good with the decision. That is so important. BIG HUGS, though.
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Post by JC on Sept 13, 2011 20:32:54 GMT -5
Hey girlie, I talked to you on Facebook but wanted to stop by here and say that I'm glad you made this decision because I think it was best. He'll be OK!
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Post by jessabug on Sept 13, 2011 20:34:04 GMT -5
Thanks Kristin I think the hardest part about this will just be learning to cope with my pain on my own better. Jake was such a huge part of my support system and it's going to be a bit of a transition learning to live without that. Like last night, for example, I had a really bad episode of cramping that was almost as bad as when I went to the ER back in June, and it was a big wakeup call to realize that I couldn't just call Jake. But I called my mommy instead and she distracted me until my meds kicked in. So see? Just a transitional experience Thank you for your support though, and BIG HUGS back
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peppagrl
New Member
Ahhh Endo...You will never define me!
Posts: 12
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Post by peppagrl on Sept 13, 2011 21:18:33 GMT -5
jessabug- I had my period about one week before my surgery on August 31st. I ended up using left over percocet to use because like you said you can't use NSAIDs. Toradol is my favorite to use for my period pain. I was given Toradol intermittently the day after the surgery for my pain.
I just got back from Bend this morning. I had my surgery with Dr. Redwine last Thursday, September 9th. I didn't expect to stay in the hospital and I thought the surgery was going to be 3 hours. It turned out the surgery was worse than what Dr. Redwine and I expected. I was on the table for 5 hours. I had first a laparascopy (for removal of endometriosis which was everywhere) and then a mini-laparatomy, removal of a left uterosacral ligament with a nodule (which he palpated on exam one day prior), partial bowel resection, and four fibroids removed (one which was large at about 5cm). I ended up being hospitalized. Plus, I had a fever likely due to atelectasis. I'm just letting you never know what to expect when you go in there.
The next day I walked around a lot and then try to avoid the narcs because having slowness of gastric motility caused me to have post-op ileus last year (when I had a laparatomy in October). Boy, that pain is horrible! I'm not big on narcs anyway (which surprised the nurses), so all together I've used 0.5mg of Dilaudid twice so I can go to sleep.
Now, I still have pain at the incision sites (belly button, right trocar site, and bikini cut) when I laugh or cough. I'm still using the incentive spirometer frequently. I now tire quickly though and I'm exhausted after traveling across the country yesterday. Definitely, take it easy!
His staff is awesome! And, I found Dr. Redwine to be great all around!!!! He kept in contact with me everyday. He answered all my questions. His exam is very thorough!! He is the answer to my prayers! He found more on physical exam than all of the past gyns and REs I've been to. Even if my endo comes back, I'm so glad that I met an awesome surgeon who didn't make me feel like my symptoms were in my head. He understood everything I told him. I had minimal blood loss with that huge fibroid and I didn't need a blood transfusion?!?! That's how good he is and he found the other two fibroids not picked up on ultrasound by palpating my uterus.
The nurses on the unit commented how fast I've been recovering. Call it optimism because it's Dr. Redwine and his surgical technique or only God knows how. I was just determined to get better.
Yesterday, when I left his office, I was about to cry tears of joy. But, Dr. Redwine made a funny...and I started to laugh it off. I'm forever grateful for his optimism! I've made the right decision.
I think you did too! Wish you luck!
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Post by painttheseconds on Sept 13, 2011 21:48:02 GMT -5
I'm sorry to hear about the breakup Jess, but it sounds like you made the best decision for you. Just wanted you to know I'm thinking of you. Big hugs.
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Post by jessabug on Sept 13, 2011 23:24:29 GMT -5
Thanks so much girls And Nichole, I'm thinking of you too! I'm going to pop over to your thread soon to get a catch-up. Peppa THANK YOU SO MUCH for all of your info! That was SO valuable and great for me to hear. I do have a question, and I'll PM it to you also if you don't check this thread because I really really am curious about it! When I went for my first exam with Dr. Redwine, it was actually REALLY brief, which surprised me. I mean, we're talking more brief than any pelvic exam I've ever had in my life. My first thought was, how can he tell so much from THAT? But now what I'm wondering too is that you say he did an exam on you the day before your surgery and that he was really thorough.. did you have an initial exam with him too? If so, would you say that his pre-op exam was more thorough than his initial exam? I'm sure many of you know what this is like, and I know that we all know the saying that endo pain is not related to endo severity, but I sometimes just get so mind-boggled at the idea that I can be in SO MUCH PAIN with so little endo (we don't know yet if that's the case, but still). So when he did his initial exam on me and only found tenderness in my cul-de-sac, I was stupefied. I guess for some reason, because of how much pain I deal with on a regular basis, I expect for there to be more. I almost WANT for there to be more, because THAT's what would make sense to me! Anyway, don't you just LOVE Dr. Redwine's humor? God, he is like a life-saver for me because of that. He did the same to me -- any time I felt like crying, he made me laugh instead, and I was so grateful. Oh! Another question. You said that Dr. Redwine encountered some unexpected stuff, and you had a laparoscopy and then laparotomy -- was this planned, or does it mean that once he was in there he decided that he needed to do that? I guess a little part of me is wondering what to be prepared for -- the plan is laparoscopic excision of endo w/laparoscopic presacral neurectomy, but can that change once the doctor is in there? I don't really care much, I just want to be fixed, but I don't really know how doctor-protocol works and am wondering whether or not doctors are allowed to amend your surgeries as they see fit without your consent (i.e. say they plan a laparoscopy, but once they're in there, say they decide they need to do a laparotomy, can they just go ahead with it?). I realize you might not have the answers to that, but anyone who does, I'd appreciate it! I've always been curious about that sort of thing.
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Post by painttheseconds on Sept 13, 2011 23:59:47 GMT -5
I honestly don't know how doctor-protocol works either. When I had my lap back in Aug. of 2010 I also had an appendectomy. I wasn't expecting that at all, but a surgeon evaluated my appendix and said it needed to come out because endo was all over it. I woke up pretty surprised when they told me, but I was glad they got it out of there.
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peppagrl
New Member
Ahhh Endo...You will never define me!
Posts: 12
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Post by peppagrl on Sept 14, 2011 7:00:20 GMT -5
jessabug (or anyone else) - sure you can PM me anytime! I'm holed up in my house either studying for boards, on the net, or watching a movie. I can't drive at least two weeks. I'm just resting up. For my recovery, I was told I may even tire easily upt to 6-8 weeks and to take it easy.
I live in Philly so I had a pre-op appointment the day before the surgery was scheduled which included first time meeting, examination, and all the anesthesia work up at St. Charles Hospital.
My first visit with Dr. Redwine was hilarious, a show of itself! He went to put on his stethoscope to listen to my heart and lungs, I got up in the stirrups. He says, 'I know you can't wait for the pelvic exam, but no!' I was so nervous! When he did my pelvic exam, he touched one part that had me howling like a wolf (I kid you not!). I almost fell off the table when I got up and he had to catch me, that had everyone doubling over LOL!
It turned out it I had a 2 cm nodule of endometriosis on my left uterosacral ligament near my rectum. I've been complaining about this pain for many years everytime I have my period. When I told him that driving over speed bumps drove me crazy, he KNEW and UNDERSTOOD! It was like, THANK GOD someone KNOWS! You can tell Dr. Redwine knows his anatomy! He understands a lot about the bowel anatomy which is definitely affected by endo.
Then the next day was surgery. I had a mini-laparatomy because of a known huge fibroid. I knew the day prior that he was definitely going to do it and I wanted the bugger out of me (didn't care about the scar). This is my second laparatomy in less than a year for submucosal fibroids (I had three removed in October). They have to cut from above since doing it intravaginally can cause adhesions of the uterus.
Dr. Redwine was basically correcting what the last surgeon didn't see (or feel). In fact, I think a lot of what I had last October was just stoopidly missed by a Reproductive Endocrinologist (out of all gyns). That's a whole different story. In my quest for an endometriosis specialist, I was told to have a MRI of the pelvis (it showed only 2 - one 5cm submucosal fibroid basically obliterating the uterine cavity pressing on my bladder and one 2cm pedicle). Dr. Redwine felt two small ones. I'm glad he did this, because I'm sure someone else would of not paid attention to this.
On Saturday, I was discharged back to my hotel. Monday was my post-op appointment where we discussed again what was found, the 6 week post-op follow up with your gyn, and a brief examination. I had questions of course. Yes, I agree the visit was very brief, but he didn't get annoyed by me asking them. Going into Bend, it's sad to say that even the cab driver who drove us to our hotel understood more of endomeriosis than some of my own family members. And, yes it's true my symptoms are not as severe as some women on here. Toradol gets me by my symptoms. I guess I'm fortunate I didn't take hard core narcs like Vicoidin.
For me, the fibroids were just hemorrhaging me to the point it was affecting my life. I just figured to take care of both the endometriosis and the fibroids. Little did I know how severe my endometriosis was. I was staged 1 in '07 (but I think it was extremely overlooked by that RE), I'm sure I was a stage 2 at least.
Jess, I'm sorry you have to go through this stressful time of your life. You shouldn't have to go through it like that. In a way, if my mother was alive she would of been there for me. I believed she also had endometriosis. She would tell me when I was a teen to 'just deal with it' because she 'did too'. But, remember you are tough for getting through this and you have to believe you will get better!
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Post by jessabug on Sept 14, 2011 17:39:01 GMT -5
Ohh, ok, so your pre-op exam was probably the equivalent of the exam I had about a week ago. Your story is so interesting! Thank you so much for sharing. I think you're right too, that some surgeons I don't think have any idea even how to "stage" endo. I'm curious to find out what Redwine finds, because according to the surgeon that did my first surgery, there was "minimal" endo... even though I'm in persistent pain. My mom and I think that she had endometriosis too! She would tell me the same thing, and she even admitted recently to thinking that when I was younger I would complain because I wanted attention. She also felt really bad because when I was in high school, I was always calling her asking her to leave extra tampons or a change of underwear in my locker, and she would always lecture me on being immature and unprepared, but what she didn't know is that I'd have to stuff every pocket of my backpack with tampons and panties to be prepared during my period, I was always bleeding through my tampons (I'd have to change super tampons every hour) at school, sometimes even through my jeans. Haha.
Interesting update, and I'd like to hear from my doctor girls here! (Ahem, Jenaya, and Karla don't you have some medical experience too or am I mistaken..?) I was putting together my refund petition with all of my medical documents and for the first time seriously looked at my hematology report from the night I was in the ER. They told me that everything was normal, but now that I'm looking at the paperwork and reading the legend, I'm finding that that was not the case at all! Here is what I found..
1) My white blood cell count was high. 2) My anion gap was low. 3) My ALT test was low. 4) My CRP level was high. 5) My urinalysis RBC was abnormal.
What does this mumbo-jumbo mean? Ready... set........ GO!!!!!!!
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Post by Karen on Sept 14, 2011 18:30:43 GMT -5
The only one that stands out to me as sounding familiar is the CRP - C reactive protein. I believe it's a marker of inflammation? My guess is Jenaya will have some more details on that one!
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Post by omaklackey on Sept 14, 2011 19:01:56 GMT -5
White blood count high usually means infection but with the CRP being high it could also mean some kind of unspecified inflammation. (ie, endo in your case) The urinalysis:blood in urine indicates something wrong but in my case the blood in the urine was from IC cause by my endo. The other labs, I haven't a clue.
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Post by jessabug on Sept 14, 2011 19:05:02 GMT -5
Hmm interesting! Thanks! Do you think that's a possibility for me too, with what you know about my recent bladder issues?
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Post by 1234 on Sept 15, 2011 9:46:11 GMT -5
for what it's worth, my white blood cells are ALWAYS high--and particularly the "eosin" ones? It's basically been put down to having endo: my immune system is always ON.
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Post by jessabug on Sept 17, 2011 11:06:43 GMT -5
well.. it's time.. I'm about to take a shower and then head off to the barn to help Lilly's new owners load her up and take off with her... I have to admit, while I'm very sad, I also feel kind of a sense of relief. On the upside, today is game day (go ducks) . I've also spent lots of time working on the friendships I want to keep around, and making some new ones. I think I've finally reached a point where I'm able to just acknowledge that some people are clueless and not take it personally. I knew it would happen, but earlier on I just wasn't ready to accept it and was feeling bitter. Now I feel much more patient. It also feels better to have the weight of guilt (which granted, I only brought upon myself) over Jake off of my shoulders and I no longer feel like I have to factor him into everything that I do. I've sworn off anything serious with boys until Jan/Feb-ish; I think it's going to be great and is also quite realistic for me since I don't want any baggage during this time and I don't want to even bother trying to find a guy in his early twenties who has the emotional maturity to deal with my health problems... that's a joke haha... not to mention the fact that I'm just NOT interested in relationships right now, period, which I've already mentioned. Right now I just want to have fun. I have to admit though, I'd be totally down to lock lips every now and then with a specific tall, handsome fellow law student of my roommate's that I met last week...
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Post by KSA on Sept 17, 2011 18:45:18 GMT -5
I am playing catch up Jess so sorry for the break up. You are young go have fun. As for your tests I do not know what all of them mean even tho I'm sure I have had all of them.
Blood in urine I always have that but also suffer from chronic kidney stones do you get those?.....Karla and Karen are best at all the testing and what it all means.
Are you feeling better now that your mom kinda knows now that all that time it was endo? I went thru similar situations and felt like in school no one ever got it. I did not want to be bleeding like that all the time I just did and did not have answer to why I was always so worn down until I was in my 30's. I remember teachers, mom, friends giving me a hard time and once I knew what endo was I wanted to scream ok so I was not the girl that just wanted to get out of school I really was not normal and anemic. My sister was the same and since we are twins we confided alot in each other so I figured everyone was like us only of course to learn that no we both have endometriosis. I
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