mskim
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Post by mskim on Aug 1, 2014 20:42:08 GMT -5
Hello - just thought I'd stop in and introduce myself.
I am getting ready for my first lap surgery next month - met with my GYN this morning to review my u/s results and discuss options. I have a 4cm endometrioma on my left ovary, and apparently some smaller cysts as well.
Some background, I guess…I was 9 when dear old AF decided to grace me with her presence, and when I was in high school they were nightmarish. Painful, heavy, etc. They immediately put me on BCP to help control it…only, it didn't really help all that much with the pain. Around 7 or 8 years ago, my mom had a stroke which they attributed to her being on BCP for so long, so I stopped taking mine (we also didn't know if there were other blood disorders, or if I had the same heart defect she had). My periods were OK…and then all of the sudden, I had the most horrific pain I've ever experienced on my right side. Thinking it may have been my appendix, I went to the urgent care clinic, who then referred me to the hospital for a CT scan. They say they never found the source, but they found traces of infection in my blood and suspect a cyst ruptured. Ever since then, I've had issues…spotting all month long, heavy periods, pain like I've never known before, bathroom troubles. As many of you have experienced, it's hard to describe the pain and discomfort - it ranges anywhere from a dull ache in my upper thighs and lower back, to full on stabbing and twisting pain in my lower abdomen and groin. I have maybe 4-5 days a month where I don't bleed in some shape or form…but there's always the pain. I've had 3 rounds of iron infusions because I'm now anemic, and I have to take iron supplements daily (that does wonders for your digestive system when it's already whacked out to begin with, let me tell ya!) I've been to several GYNs in the last couple years…the first dismissed it as typical period pain and wanted to put me on the pill again. Another said "wait and see" what the cysts do, and I can either take the pill, or endometrial ablation for the bleeding (uh…I'm only 32, and I'd like to at least TRY to have a kid or two…which he knew). My most recent GYN is a saint, I'm sure of it. He's humble, he listens to us, and he's not pushy at all.
So, now here I am…32, married for 12 years, and waiting to learn what our next steps are. I'm very nervous about the surgery - no matter how much I read about it, and how many people IRL tell me it's not that bad, it's the first major procedure I've ever had done and I'm a HUGE weenie.
Anyway…if you've made it through all that, you're a trooper. Thanks for all the wonderful info you ladies have provided thus far!
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mskim
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Posts: 28
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Post by mskim on Sept 4, 2014 9:58:29 GMT -5
I'm not trying to carry on a conversation with myself, but thought I'd just post an update here... I was originally scheduled to have surgery on Monday 9/8...but my doctor called me last night and said I was too anemic for surgery and they want me to try yet another form of iron supplements for a month to get my levels up. My Hemoglobin was 7.9...he wants it around 9. 5/2013 my hemoglobin was 12-something, 4/2014 it was 8.6...yesterday it was 7.9. Hooray for anemia.
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terceltina
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Happy, and now with 4 cats.
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Post by terceltina on Sept 4, 2014 12:58:14 GMT -5
Hi, I hope your surgery goes well. I was taking vitamins and a special diet for 3 weeks pre-surgery to get my platelets high enough. I found that avoiding onions, garlic, ginger, wheat, dairy, while eating a simple diet of rice and veggies, and rice and eggs, worked really well. I doubled my platelet count almost. I took a multivitamin, 2 types of probiotics designed for pre-surgery immune boosting, and calcium magnesium. Have any of your doctors talked about diet changes to help the iron? One of my doctors said to avoid coffee, as it inhibits the ability of the body to absorb iron in the diet. And chocolate, and alcohol. My life isn't very fun foodwise right now.
The first surgery is kinda difficult emotionally. But if you ask, you might get to meet your nurses and anesthetist beforehand, and go over concerns. I would totally recommend making friends with the nurse, as they will be the one holding your hand as you wake up trying to vomit, or when you find out you can't stand up right away after surgery.
But also, have your husband there as soon as possible. It's really scary waking up all hurt and feeling like your body has been used as a playground, and the best thing is a hug. I had the nurses phone him as soon as I was awake, which was right away. Which leads to point 2- If you lose a bunch of weight pre-surgery, it can throw off the anesthesia. I had a sickness, possibly a burst cyst or something, which kept me in bed for a week, with little to no food. I lost ten pounds or more. So I didn't have a slow wake up, it was more a sharp, sudden, I'm awake and in pain thing. I didn't mention the getting sick to the doctors, as I didn't want to miss surgery. Probably a bad thing to do. Everyone works differently in how they wake up post surgery. Some it's immediate, some sleep for a couple of days. I wasn't so lucky, I couldn't sleep properly for 3 days.
But the post surgery is okay, for the most part. Have relatives make you soup, as there's going to be no energy for a week. And I'd say gather as many pillows as possible, of varying shapes and sizes. Because its hard to get comfy. One pillow on the stomach helps with the pain, but you may need to have your head raised, your knees raised, or any combination.
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Post by chibineko717 on Sept 4, 2014 15:44:10 GMT -5
That's horrible. It's hard enough to get scheduled for surgery and now it's cancelled. I had a surgery cancelled the day before since my surgeon decided that he couldn’t do it.
Is your surgeon going to try to take out your appendix during your surgery? I went through 3 surgeries before it was removed. Having it taken out helps a lot with the pain that radiates to your legs.
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mskim
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Posts: 28
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Post by mskim on Sept 28, 2014 18:46:18 GMT -5
Thanks for the replies! terceltina - I've modified my diet to include things that are higher in iron, and I've timed my intake of coffee/tea/calcium to work better when I take the iron supplements. Bless his heart, my husband has been a total trooper through all of this - he is always quick to suggest things to the doctor when I'm too emotional to think of them. And let me tell you…I am an emotional train wreck!! chibineko717 - there has been no mention of my appendix, but he did say that once he's in there, he'll check everything out to make sure it all looks good. Interesting that the appendix would be related to the pain in the legs…the human body is a mysterious thing! I've got 6 days left of the Irospan 24/6 that I was prescribed (which has been the BEST iron supplement I've ever taken), then I get new blood work to see where things are at. Not only am I anxious about having the surgery, I'm getting a little frustrated because it's starting to impact being able to make plans! The holidays are a huge deal in my family, and I really don't want to prolong things any more than I have to!
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TMM03
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Post by TMM03 on Sept 28, 2014 23:48:35 GMT -5
So did you have the surgery then? I've had 2 laps. Other than the arm pain from the anesthesia and the stingy belly button, I can't say mine were very memorable. Of course, it all depends on what they do when they're in there! If you haven't had it yet, I promise it's not too bad. If you have, I hope it went well! I have some reading to do (hoping I didn't overlook your post surgery story).
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mskim
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Posts: 28
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Post by mskim on Sept 29, 2014 18:07:41 GMT -5
Nope, no surgery yet. Just waiting to finish up my iron pack, then get new blood labs drawn to check my levels. I'm hoping sometime in the next month or so… I am so concerned, though, that all the iron I've been taking has been depleted through my very heavy periods…I feel like it's a never ending cycle (no pun intended) and I'm worried my levels will never get back to where they need to be. Hopefully I'll be back with an update in the next couple weeks on my hemoglobin levels and a new date for surgery!
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TMM03
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Post by TMM03 on Sept 29, 2014 22:24:27 GMT -5
What a bummer that's holding things up. Wish I had something to contribute but when I was given iron supplements in my early 20s for anemia they made me throw up, so I stopped. Obviously you can't do that! You'll be in my prayers! Just out of curiosity have you ever had your vitamin D levels checked? If not, I wonder if it might help. It's supposed to help us process calcium. I was severely deficient in the winter and haven't been anemic in the 2 blood tests I've had since I took them. But regardless, keep us posted!
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terceltina
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Happy, and now with 4 cats.
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Post by terceltina on Sept 29, 2014 23:33:31 GMT -5
Hi mskim, glad to hear that you're doing better. And yeah, on the vitamin D, it's a great combination vitamin to take with calcium magnesium, as it's very important in its role in helping other vitamins like iron. Plus, I know that once the skies get a little grey, if I don't take it, I get grumpy cat level depressive. And I live up north, so it's grey for 8 months of the year. Anyhoo, sorry to hear that you're having the heavy period thing. That can be a bummer when one is trying hard to not be anemic. And not to be depressing, but I just had my first post-lap period, and it was worse. I was fine for energy, for pain, but I lost 12lbs with 7 days of heavy bleeding. So you should probably be on alert for post-surgery anemia too.
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mskim
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Post by mskim on Oct 20, 2014 11:56:43 GMT -5
Just an update, for anyone interested Had new labs drawn to check my hemoglobin levels (that was an ordeal in and of itself!**) and they're NORMAL!! I'm so happy this new iron pack has been working so well for me! So, I just got off the phone with the scheduler and I'm ready to go for Monday 11/10, provided my pre-op labs are still in the normal range. I've been continuing on the iron pack (I have three refills until it's done, so I might as well make use of them!) so hopefully I'll be in the clear. Now I get to start the pre-surgery nervousness again! **My doctor moved to a new location, and a new system. Despite not needing an appt for labs, I had to wait 45 minutes to get them done. The first phlebotamist couldn't find a good vein, so she called for reinforcements. They used this nifty infrared gun and still couldn't find one! Then they soaked my hands/arms in very warm water...still nothing. Finally after sticking me twice with no luck, they sent me over to the hospital to have their lab do it...with instructions to BRING IT BACK TO THEIR OFFICE WITH ME!!!
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TMM03
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Post by TMM03 on Nov 6, 2014 0:37:59 GMT -5
I'll be thinking of you and sending good vibes. Just posted an update on my intro message... looks like I have a lap coming up next month! Bye bye to uterus and fallopian tubes.
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mskim
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Post by mskim on Nov 11, 2014 13:59:11 GMT -5
Had my surgery yesterday morning. Overall, it went well, though the results were definitely not what we were expecting.
My doctor was literally in shock that I wasn't in more pain/discomfort than what I was. He couldn't do anything besides look around out of fear for cutting into something that shouldn't be. I have stage 4 endo, and my bladder, intestines, uterus, and ovaries are all tangled together with adhesions. Basically, like Pangea before the continents split apart. He has a couple ideas in mind, but it will require more involved survey later down the road...
Right now, I feel like I've done a thousand and one sit ups. The pain meds they gave me make me vomit, but they really do help...not sure if it was the meds combined with the after effects of anesthesia? My incisions are uncomfortable - mostly the one in my belly button. And the nurse who discharged me was horrible.
Aside from that, I'm resting at home, enjoying being waited on by my hubby :-)
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TMM03
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Post by TMM03 on Nov 13, 2014 16:20:08 GMT -5
Well! Sucky that the endo is so advanced, but at least you know now! Also sucky that you'll likely be having more surgery, but obviously smart to have a plan before the doc goes back in.
I experienced the same kind of nausea and pain you're experiencing after my 2 laps. The belly button incision will haunt you the longest. I hope the doc gave you a decent anti nausea med to counteract the pain meds.
Just got a call from my gyno's office today. They've asked me to block off Dec 15 for my hysterectomy. Last night I told my husband that since my uterus is being evicted we should give her a name. He named her Eunice. After all the pain she's caused (and MA painfully aware this isn't the case for everyone) I can honestly say I'm looking forward to saying goodbye to her.
I've asked the doc to check for adhesions, endo, and cancer. Her colleague is a gyne-onc, and she says if she gets in there and finds cancer, or if my uterus is welded to my colon, she will call in the appropriate docs.
Keep us posted on what plan of action your doc wants to take, and enjoy being pampered while you heal!
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Post by chibineko717 on Nov 17, 2014 13:50:34 GMT -5
I'm sorry the doc couldn't do more during the surgery. Rest well and know that I'm praying for you!
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mskim
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Post by mskim on Nov 26, 2014 18:46:45 GMT -5
Had my follow-up with the doctor today…he said he couldn't even get to my uterus because the two endometriomas on my ovaries were so large they actually met in the middle. I am pretty bummed out - my options are further, more involved surgery which may or may not be beneficial to me and I risk losing my ovaries/tubes/uterus, not to mention possible bowel resection, etc. Or Lupron. He asked where we were in terms of wanting to have kids…talk about being put on the spot!! Sure, it'd be great - I'd love to, but right now I'm just concerned about what the endo has done to my body already. Of course at the time we were visiting him, my husband and I were both too overwhelmed to think clearly and ask questions…so he'll be getting a phone call from me in the next week.
He said the surgery (as I'm sure many of you have experienced) would be a laparotomy, and he'd go in with the intent to separate what he could…but because he couldn't get to everything during my laparoscopy, he isn't even sure what he'll be able to get to. And he said once he starts detaching the organs from each other, he can't just stop…so if he gets too far along, there is a fair chance I could wake up with little to no reproductive organs.
The Lupron makes me nervous. It seems like the easy way out, but I've heard a lot of horror stories on side effects, etc. And the thing is, for as advanced as my endo is, I do not have nearly the amount of pain that most of you ladies have. It's sporadic, and only correlates to my periods…and occasionally the cysts. Most of the time it's just a general feeling of discomfort. My understanding Lupron is more for those with debilitating pain…so I'm not sure it's worth it.
My doctor is one who does not prescribe birth control pills - which is one of the main reasons I went to him, but I'm wondering what my other options are…I've been trying to read through the drug therapy board, but it's overwhelming.
All this before Thanksgiving…Lord I do not feel like spending time around nosy family members tomorrow!!! *sigh*
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