hurtz
New Member
Posts: 25
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Post by hurtz on Jul 27, 2009 20:43:11 GMT -5
I totally wish we could bottle the just-after-lap-I-feel-so-good-I'm-so-optimistic feeling and take it out when the pain comes back.
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Post by cherry on Aug 1, 2009 6:49:22 GMT -5
Aww jenaya I'm so sorry it's returned so quickly, it was lovely to see you so happy after your op. I felt the same way after my op 2 years ago, and it took a while to come back but the pain came back very quick once it started rearing it's ugly head. I'm truly grateful for my injections this time around, the GnRH. I'm having little tiny pink bleeds that cause terrible pain so I'm grateful not to have my period. The outside world really has no idea how all-pervading this disease can be. I didn't understand, cos the friends I promised I would be boogying with post-op, have given up asking me out cos I'm as bad as before my op. I don't think docs with all their experience of gynae patients even know. Only we see, only our nearest and dearest see. There's nowhere to direct that frustration, an even the best and brightest of us have our utterly dark moments with this disease. I'm just so glad to have you girls around, and happy to give my support wherever it's needed. Endo has at least given us the beauty of such rewarding relationships  |
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Post by italialynn on Aug 1, 2009 8:37:51 GMT -5
Amen sista  |
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Post by JC on Aug 1, 2009 10:43:03 GMT -5
You're so right Cherry! You said it best.
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Post by Karen on Aug 2, 2009 18:24:23 GMT -5
Ditto!
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Post by omaklackey on Aug 2, 2009 18:55:03 GMT -5
very nice sentiment... here I was trying not to wallow in pity, glad we have everyone to yak at!!
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Post by italialynn on Aug 3, 2009 10:19:55 GMT -5
You know, bringing this up again, I don't really know what path to take at the moment. I'm 3 months post-op and just had (and am still having) one of the WORST periods I've ever had. I cannot even articulate the severity of the cramps I had yesterday. It came on like a ton of bricks and took 2 aleve, a vicodin, and a bath to get it subdued. I was the type pre-op that would have pretty bad cramps, but my main problem was from ovulation to period. This period has been God-awful and is still going strong.
My husband is starting to get pissed at the fact that the CEC promised us up and down they were going to 'cure' my endo by excision, and he sees me markedly worse than I was before my surgery. I can't stand him watching me go through this again. He's VERY anti-doctor and is almost taking an "I told you so approach," but in a nice way.
Being through it before, I took it with a grain of salt, but I honestly had high hopes this go around. I know it can take up to 6 months, but this is different pain. This is severe adhesion pain, the type that pulls your insides out when you stand up from sitting down.
I just don't know what to do at this point...do I even waste my breath by calling them and telling them my situation? Or just deal with it and try and live with the fact that this is just how it's going to be for now on. I'm back off the pill this month and am curious to see if it's going to get worse, or if maybe I'll feel better.
I don't know. I just don't.
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Post by JC on Aug 3, 2009 10:24:00 GMT -5
aww I'm sorry! Maybe get a second opinion? I don't think you should ignore it that's for sure! If it's worse than before then damn, that's not normal!
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Post by Karen on Aug 3, 2009 10:34:08 GMT -5
Ugh, that SUCKS! At least before the surgery, you likely knew what to expect. First off, I'd start by calling the CEC and telling them what's up. You spent a lot of time working with them, they know your history, and I think it'd likely be a good idea to at least talk to them and see what they have to say. Make it very clear that your pain is unacceptable, that you've done the wait-and-see for a bit already, and it still sucks. I second Jenaya, too, about a second opinion. Best of luck!
On the other hand, your body IS still healing. Are there any modifications to your diet that you can make to see if that might alleviate things a bit, or perhaps back off on some of the things that seem to trigger some of the pain (whether endo pain or more the adhesion-type pain)? Have you considered acupuncture or any more natural routes to cope with the pain?
As for going off BC, it'll likely take a few months for your body to adjust. I know everyone is different (and there's obviously a difference when it comes to forms of BC), but I felt a TON better overall about a month post-mirena, although my first two periods absolutely sucked.
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Post by italialynn on Aug 3, 2009 10:52:51 GMT -5
I agree. I think I might at least call and let them know what's up. They've been wonderful in the past, and I know there's nothing they can really do, but maybe I'll feel better just voicing my opinion to them.
As far as diet and acupuncture go, I've done the whole gammit. I don't know if you know my history, but I'm a no go for any type of diet since I have beta-thalessemia and have to keep on a high-protein, high-iron diet. When I tried the endo diet I ended up in the hospital! I just lost too much weight and my hemoglobin plummetted. I eat a pretty healthy diet and my only vice is wine, but I've kept that at a minimum lately since I'm still taking NSAID's or painkillers on (almost) a daily basis.
I loved acupuncture, but I only got a few hours relief from it and I couldn't justify spending the $400-$500/month keeping it up when it was only a temporary fix.
The only thing I haven't tried yet is the Clear Passage Therapy, but there again, it's about $4-$5K out-of-pocket for treatment and I truly can't swing it now.
It just sucks that I've shelled out over $5K of my own money already to travel to another state to go to an "endo-guru" and the pain is still an everyday thing.
I usually don't wallow in self-pity, but today I am. I'm sorry, I just needed to get it off my chest. Just kinda hit me like a ton of bricks this morning when I woke up in pain again. I just need a break from it.
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Post by staceys on Aug 3, 2009 11:19:39 GMT -5
Oh dear, I am so sorry, but I can tell you that you are not alone. I am going through my own misery right now and I'm quite doctor shy after my last appt and I don't know what to do. Although my doc wasn't a guru like the CEC, he does perform excision and I had such high hopes. I am 8 months post-op now and I'm in horrible pain. I don't know where to turn, as I thought this guy was the best guy in the area. I don't have $25k to spend to go to see one of the top docs. I am going to do the diet route and try to control the pain, but I 'know' that I have another endometrioma, just don't know how big. I am now bleeding since Friday and this NEVER happens to me mid-cycle, EVER! I have a long, long work week ahead of me which includes a training for a new study in Boston and then off to NC for another day of work. I am really exhausted and in pain and I don't know how I'm going to make it through. I'm eating advil like they are candy and it's starting to rip up my stomach. We planned an impromptu trip this weekend to see two great bands, and by Saturday night, I could barely keep myself standing through it. It's so frustrating and I'm just so sick of dealing with this... I hope you can get some relief and answers from the CEC. I would be so devastated too my dear to go through all of that money, travel, and hope that this would be it. Take care!
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Post by italialynn on Aug 3, 2009 11:55:48 GMT -5
Wow...good luck this week. There's nothing worse than being in a boat-load of pain and having to put on your happy face to make it through.
Stay strong!
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Post by Karen on Aug 3, 2009 12:27:07 GMT -5
Nope, didn't know your full history - yikes! And I'm with you on acupuncture - I got a few days of relief, but couldn't justify the cost for what I got out of it. So the endo diet is out, got it. Honestly, I couldn't stick to it enough, but did find some pretty good relief with the insulin-resistance diet. Higher protein, lower carb. Everyone's different, though, and it sounds like you're likely doing well with your diet to begin with! Any chance you've developed a cyst or something else that's making things more difficult for you at the moment? Sorry - I don't have enough experience with those so sorry if that sounds like a naive comment!
I think it's a shame that people with chronic illnesses are often left to fend for themselves, and shell out so much out of pocket!! Best of luck getting any info out of the CEC.
And Stacy, best of luck getting through the week! Both of you get lots of rest and stay hydrated while you get over the hump!! Big hugs!
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Post by ouchy on Aug 3, 2009 14:47:28 GMT -5
Sorry, guys. I know how frustrating it can be. Italia, I would DEFINITELY call the CEC and tell them what is up!!!! That is something they NEED to know. I would at least try to get them to go in and laser off scar tissue and have a look around. That might help you heaps.
Stacey, when is your period due??? Don't know what you're using for protection, but quite a few women experience "implantation bleeding," which can give you what appears to be a "period" before it is due (**Think pregnancy!**). Another factor could be anovulatory bleeding. I'd say take a pregnancy test in a few days or go for hormone testing! If you don't stop bleeding, request an ultrasound to see how thick your uterine lining is in addition to to the hormone tests.
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Post by italialynn on Aug 4, 2009 6:48:36 GMT -5
So I sent an e-mail to the director (Heather) of the CEC yesterday afternoon explaining all of my symptoms and such. I received a very nice, sincerely heartfelt letter from here within 5 minutes saying that she'll discuss with my surgeon and I should receive a call back from him or one of the nurses today....stay tuned On another note, I was just so over it yesterday I went home and cooked stuffed shells from scratch and drank 1/2 a bottle of really good Chardonnay. That made my night better  |
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