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Post by amber84 on Sept 9, 2010 21:54:54 GMT -5
So here's the thing....I have suffered with Endo as long as I can remember. As a matter of fact, I was DX with IBS when I was 6, and while for many years I thought I just grew out of it, now I realized the timing coincided with when I started my cycle. So now I think it may have been the Endo all along.
Now, I have made it a goal to be informed about what is happening to my body. What this disease is and what my options are. I want to be proactive. And I have been. I have tried the diet and different variations of it, hormones, living on pain pills and having no life etc. I joined this site and read on and on about all the many experiences and options. I want to be informed!
Here is my problem: When does information become too much information??? Where do you draw the line??
See, my GYN said that at this point hysto is my only option. I am 26. I have no kids. And to be honest I was pretty much begging for it!! I just can't do this anymore. However, I am at a crossroad. I am switching doctors due to another issue. I feel like I am starting over. I know I will go in and she will say, "you've never been on Lupron. well i'm not touching you until you do." I DON'T WANT IT!!!!!! But then I feel like maybe it is worth the risk..before I rip out my organs. I read about HRT, bio-identical HRT, new drugs that are in case studies like the aromatase inhibitors, natural methods, radical excisions, therapies, hormone testing, miracle clinics here and miracle doctors there. "NO DRUGS!!" "YES DRUGS!!"
I understand different things work for different women but I AM SO OVERWHELMED!!!!
I feel like I know LESS about what I want now than I did a month ago, a week ago or yesterday for that matter. I don't even know what I want from this new doctor. My head is spinning, I am in pain, I am emotional, I can't focus on anything because of these stupids meds!!!!! I feel like I am being overly dramatic about it one second and the next I know I have a serious disease and I need to do something about it!!!
I think I am going to explode.
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Post by hellsbells on Sept 10, 2010 2:35:54 GMT -5
Oh amber you're in a place many of us have been - what the hell to do for the best? If your endo is so bad that you're considering a hysterectomy at such a young age, maybe it is time to pursue some of the other options that you haven't yet tried? I've just had 7 months of progesterone treatment, of the synthetic variety. I've had Provera 10mg twice a day, and I had Mirena for 4 months and you know what, it kinda worked a fair bit. Mirena pain was awful though, had it have it out after 4 months. I don't know if you've tried that hormone yet, but as far as hormone treatments go it seems to be one of the less harsh and invasive. I gained some weight, that's the worst side effect for me. But it's kept my periods and my pain at bay for several months. Have you considered just another lap for a bit of a clean out?
Big hugs, I hope you feel better soon x
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Post by Karen on Sept 10, 2010 6:39:29 GMT -5
Yes, it can be incredibly overwhelming. I'd suggest writing it all down, getting it all down in one place, and right down your thoughts about each. Take it to the doc and talk every single one of them over. He might be able to help you prioritize options for you and wrap your head around things. Yes, there are many options out there, but which ones are YOU comfortable with? Start there!
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Post by pretty on Sept 10, 2010 12:02:42 GMT -5
I just really feel you on this. I think we all go through this at times. The hardest thing about it is that we are socialized from a young age to 'respect' and 'listen' to doctors, attributing magical healing powers to .....other people. They are highly educated, but face it, no one knows much about endo, and it seems to me that the ladies I've met on this board are better informed than 99% of the medical people I've talked to about it. You have to face the facts so you can begin to trust yourself. The facts are: Doctors are unfamiliar with this disease. There are no standard treatments that work. More research is needed. Hysterectomies don't prevent endometriosis. You may still have loads and loads of pain and problems, even with a total H. So that said, you must not let your doctor talk you into something you know probably won't help you, and may harm you, just becuase they have been to medical school and you haven't. It is very hard not to trust and believe a doctor, especially when you are run-down, exhausted, and in pain. We all want pain to stop. Your doctor wants your pain to stop. But when it comes to removing body parts, you should have a better reason than "we don't know what else to do" or " other people have done this so you should do it" or " I'm a doctor, and I feel like I have to do SOMETHING"
that's my 2 cents, please, take a deep breath and trust your instincts. You can do this. Good luck! Pretty
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Post by amber84 on Sept 10, 2010 19:17:17 GMT -5
Thank you so much ladies! I was having such a bad night and I really needed to vent. My husband and I talk about this a lot. And while he is very patient, understanding and a very good listener....I'm starting to feel like it is the ONLY thing we talk about. It's what I think about all the time. I just wanted to give him a break this time around...so thanks for reading and the pep talks. And Pretty your right.... I CAN DO THIS!!! One day at a time is what my husband always says. You gals are the best!
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Post by dianel on Sept 12, 2010 13:48:35 GMT -5
I am new to the board and have been where you are. I did try lupron for six months giving myself shots everyday. The continous birth control pill just wasn't working for me. The side effects for me were hot flashes, and really no feeling. I don't mean no sex drive, I mean I felt numb in the area and had no feeling. I was also very dry. Sounds gross BUT it goes away after you go off the medication and in my situation my husband and I were trying to have children. I will tell you for me, it worked 100%. Within two month of going off, I got pregnant and carried my baby to full term. The endo came back fierce. We planned on having one more child, so we tried quickly and I got pregnant again. After my son and daughter were born at age 30, I did have bands put on my fall. tubes. I list this procedure under surgerical procedures. It has kept me pain free for years. After five years one of the bands broke and had to be repaired. Again, it is seven years later, pain free up until two months ago. A band may have broke or it could just be a couple months of a bad period? But again, as I have said in the board, to go all those years pain free is so worth it in my opinion. Just my story. I know everyone is different but I was your age when I did do the lupron and it helped me a great deal.
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Post by amber84 on Sept 12, 2010 23:51:11 GMT -5
So as I continue to read (I think my husband might take my laptop away for fear that I will put my head through it)...many of the theories and treatment options sound right. That is what makes it so stinking confusing for me! I know...the same thing doesn't work for everyone and I have to find what is right for me. I read so many different theories and they all sound good....in theory. I just don't know what I want. No...let me rephrase that: I want to be pain free and have my life back. The real question is...HOW?? Am I just complicating this???
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Post by omaklackey on Sept 14, 2010 0:59:05 GMT -5
Big deep breath, step away from the laptop for a minute and breath... Its so frustrating to see so many different things that people say and in this case write. Your best decision is the one you make for yourself after you do the research. What is best for you and your family. I know how fried I get when I start over thinking things and then I start second guessing those decisions. I second guess my self even when I know what I have done is right! And no you aren't complicating this... endo is complicated but you can do this!
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Post by JC on Sept 14, 2010 6:10:32 GMT -5
So as I continue to read (I think my husband might take my laptop away for fear that I will put my head through it)...many of the theories and treatment options sound right. That is what makes it so stinking confusing for me! I know...the same thing doesn't work for everyone and I have to find what is right for me. I read so many different theories and they all sound good....in theory. I just don't know what I want. No...let me rephrase that: I want to be pain free and have my life back. The real question is...HOW?? Am I just complicating this??? No you're not complicating anything. You actually make it sound very simple. But remember, simple doesn't always mean easy.
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Post by Karen on Sept 14, 2010 6:13:24 GMT -5
Think of it this way - knowledge is power! I was convinced I was destined to lead a crappy life in pain until I started to see all the available options. Yes, it can be overwhelming, but don't you also have a little bit more hope about finding something that might help you?
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Post by KSA on Sept 14, 2010 8:52:30 GMT -5
Love the knowlegde is power statement Karen it is so true! It is very overwhelming to deal with all of this. My GP suggested shortly after my diagnosis to see a therapist. I put it on hold for awhile but started to see one and when I did it made a huge difference. When you have a chronic illness like this life changes and so do your emotions. Some days are Great and others are horrible. The up and down of this disease can really get to you. My GP said any patient she has with a a chronic disease she sends to talk with someone. Sometimes it works and sometimes not but its worth a try. Therapy is not for everyone. I got lucky my therapist treats people with pain and disease and his wife suffers from a auto immune disease also so when I speaking to him I know he gets it. Not just because he is a therapist but in his personal life he has had to watch his wife deal with some of the same issues that I have. Another way to sometimes cope is ART therapy. His wife teaches that and he suggests it to most of his patients. I am in charge of most of the displays at work and I am always making something. Photography is also a passion of mine and takes the overwhelmed feeling away when I am doing anything related to art. I wonder if any of this may help take the edge off? Endo is part of your life but it is not what defines you.
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Post by Karen on Sept 14, 2010 9:34:10 GMT -5
I couldn't agree with you more, Keri! My therapist has been a big part of my progress. she's my cheerleader, sounding board, and doesn't let me ignore other parts of my life just because my mind may be so consumed with endo sometimes. I agree with your doc, Keri, anyone with a chronic illness should at least try therapy!
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Post by amber84 on Sept 16, 2010 18:22:46 GMT -5
You gals are awesome! Jenaya...you are very right...simple isn't always easy. And Karen..yes I do have more hope knowing my options. Keri...thanks for mentioning the therapist. I used to see one for other issues but it got really expensive so I stopped. She was AWESOME!! When my Endo really started getting out of control and my doctor started talking hysterectomy my friend (who sees the same therapist) asked if I was going to talk to Nancy(the therapist). It was literally the first thing out of her mouth. It was a good idea but the cost is the hard part. I would go 3 times a week if it wasn't for that. Especially now because of how bad things have gotten I can't even work. So we are relying solely on my husbands income. However the emotional treatment is just as important as the physical and it can have a big impact on things overall. Maybe I will give it a try. I have also been writing everything down. Making lists and compiling the research that I have done. That has been a major help. And just writing. Writing always makes me feel good. So lately, when my mind is racing (normally around 2am) I just start writing. Get it all out. Yesterday I had a really good day overall. But today I paid for it. I was pretty useless. That is the hard part. The days I feel like I can do this or that and I actually try it, I usually end up regretting it. I am trying to be balanced but it has been hard going from functioning at 100% down to 5 or 10%. However one of my friends always tells me that for now this is 100%...even if all I did was load the dishwasher. She said I need to focus on what I CAN do and not what I USED TO do. And that it is just temporary. I'm on the road to finding my method of treatment. Hence my signature....just a little while longer.
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Post by Karen on Sept 16, 2010 18:33:26 GMT -5
I like your friend, she has good advice!
Any chance you have insurance that will cover therapy at all? If it weren't for that, I probably never would have started!
And I agree, writing it all down to get it out of your head always seems to do the trick for me, though I often don't think to do it! I think that's part of the reason why I like Endo-Resolved so much! Take the good days when you can, and don't beat yourself up when you don't have good days. Easier said than done, but one day at a time!
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Post by amber84 on Sept 20, 2010 0:06:50 GMT -5
So...... I did it. I am finally making some decisions. I just registered with the CEC (Center for Endometriosis Care) out of Atlanta where Dr. Albee and Dr. Sinervo operate. I really think this is the best option for me. It is more radical for some ladies taste/case but I think for my situation it is more conservative than the TAH/BSO my doctor recommended (which is what I was begging for). I registered with them online and they will contact me about the records review process. The wonderful thing is....it's FREE!! The doctor will either write me or call me himself to discuss my options. The pain is uncontrollable. I can't sleep, I can't work, I can't be intimate with my husband, I can't be there for my friends and family the way I want to be, I can't be the active person I once was. I'm DONE with the I CAN'Ts!!! Going to GA for treatment would be a big deal but this is the biggest decision I will ever make so I need to make this happen. Thanks to all you wonderful women for your support when I really felt like I could explode! You are such a blessing!!! I will keep you posted with what happens! But as it stands now....I'M TAKING CONTROL OF MY LIFE!!!!
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