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Post by jessabug on Feb 15, 2012 17:49:31 GMT -5
Wow, Helen! That's super interesting that you feel like there is a connection between what you eat and your depression. You must be really in tune with yourself, I feel like I would have such a hard time pinpointing something in my diet that's causing me problems! Thank you all for the support, girls. Semi & Karla -- that's EXACTLY how I've been feeling, this whole "is this my life/who I am now?" question. And Karla, I can only imagine how you must have felt after being hospitalized. I would just hate the world if that happened to me on top of everything else, as it has to you. Damned world!!!! Rae, I don't think we're familiar with each other (nice to meet you).. are you referring to the literal 12-step program for addicts? I wasn't sure in reading your post whether it was metaphorical or literal. If so, good for you! It can be so helpful. I know what you mean though, about focusing on other people. That's actually what's gotten me through the past 12 months... I have a tendency to focus my energies on the people around me; it helps me to ignore my own sh*t. It's just the past couple of weeks that have been hard since I've experienced things that I didn't expect post-surgery and it's been disappointing. On another note..... NO PAIN TODAY OR YESTERDAY OR THE DAY BEFORE!!! I feel guilty because on my first pain-free day I was a HUGE pile of depressing crap so I didn't even want to get up and live my life, I spent most of my day in bed and walked my dog. lol. Then yesterday I was feeling more chipper and got a little more active, and then today has been fantastic! I saw a therapist yesterday and she was great. She spent 15 years with celiac undiagnosed (can you imagine the physical agony and the bullsh*t you would get from people if you didn't have proof that you had that disease?), which blows my mind. She was very cool and although this week wasn't very helpful (was more of a get to know each other/explain why I'm there type thingy) I'm seeing her again next week. I'm super excited because I AM A PSYCHOLOGY NERD! Consider it the equivalent of being a med student and getting to watch your surgeon perform a surgery on your foot. Bahah.
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Post by painttheseconds on Feb 17, 2012 0:38:20 GMT -5
YAY for no pain Jess!!! That is wonderful news. I'm glad you like your therapist. I hope you find it helpful. xoxo
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Post by JC on Feb 17, 2012 7:25:52 GMT -5
Aww maybe this is finally the turning point you have been waiting for!!
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Post by jessabug on Feb 23, 2012 16:13:24 GMT -5
Here is an email I received from Dr. Redwine this morning after I updated Alana on my symptoms. I'm not really sure how I feel about this.
Dear Jessica,
I'm sorry you are still having the cramping and backache problem. It sounds most like the uterus to me, despite the fact that the presacral neurectomy was done and nerve tissue was found on the path report. It is very unlikely that endometriosis is the cause of these symptoms. For uterine pain issues, the presacral neurectomy is the best conservative surgery that we have, but as I may have mentioned, it is about 75% effective. Only a hysterectomy is 100% effective in relieving uterine pain, but that usually isn't an option if a patient hasn't completed her child-bearing yet. Hormonal medical therapies such as continuous birth control pills or injections of depo-Provera are the only other medical options, although I know you had been on birth control pills before your surgery. A Mirena IUD is another option. This is an IUD which contains progesterone, which can sometimes relieve cramps and even lighten or stop the menstrual flow in some ideal responses. However, in some patients it can make cramps worse (since it's a foreign body inside the uterus) and the progesterone component can sometimes be associated with irregular spotting or bleeding because the progesterone hormone can cause the uterine lining to slough irregularly. So, nothing is perfect other than a hysterectomy (it is not necessary to remove the ovaries). Other than these options, pain pills (whether prescription or over the counter), massage, heat, etc, etc are other considerations for symptom relief. It can be a struggle with this type of problem and another surgery looking for endometriosis or trying to re-do a presacral neurectomy would not make much sense. About the only thing that might justify consideration of another conservative laparoscopy would be if a tender spot were found on pelvic exam which exactly reproduced your backache and cramping, although that seems unlikely to be found. In cases like yours, when there has been incomplete pain relief with conservative surgery, many women eventually wind up having a hysterectomy, which has a high chance of finally relieving their pain. In such cases, a condition called adenomyosis is often found within the muscular wall of the uterus. Adenomyosis is a benign condition which is a distant cousin of endometriosis and a presacral neurectomy seems often unable to overcome the pain which adenomyosis can cause. I hope this has been of some help. Sincerely, Dr. Redwine
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Post by 1234 on Feb 23, 2012 17:39:03 GMT -5
Jess, this is heartbreaking. I'm so sorry. What an email to receive.
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Post by JC on Feb 23, 2012 19:35:49 GMT -5
Well, first I can say that I'm glad he emailed you. Some doctors don't even do that From what I understand, he's saying that he has exhausted all surgical options for you other than a hysterectomy. He then gave you some options for hormonal treatments and pain relief medications. He also seems to be convinced that it's your uterus that's causing your pain in which there's nothing he can do surgically except to remove your uterus. I don't think he's being a bad doctor. I think he's being honest with you. I think he's trying to tell you that he's done all he can do surgically and then gave you some other options. It's not fun news by any means and I'm sorry that after all you have been through, it has come down to this. I guess let it sink in for a while and then explore the options he gave you. He suggested either removing your uterus, birth control, IUD, pain pills, or another pelvic exam to see if he could localize the pain to one location. I suppose that before you commit to a hysterectomy or one of these medication options, you could opt to have another pelvic exam to confirm what he suspects. If he gives you the same prognosis then that would be the time to explore your other options. He did what he could I'm sorry about this news. Unfortunately, even with an expert, this disease can be evasive and ambiguous. A hope for all of us endo girls one day is to get resolutions to our symptoms and that we never run out of options. But at this point, there is still a lot of research to be done. I wish I could give you a hug!
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Post by Karen on Feb 23, 2012 19:36:16 GMT -5
Aw, man, that sucks. I'm sure that wasn't an easy email to read. As Jenaya said, his opinion is from the surgical and hormonal side. Although I can imagine his note is disheartening, it's also worth noting that there are other options other than hormones or a hyster. So, consider a different perspective, and one that might not be so heartbreaking! I know this seems kinda out there, but I'll keep on my soapbox until everyone does it! Pelvic physical therapy does WONDERS for constant cramping and low back pain! I used to think things were a mess inside again, but after PPT, I realized how wrong I was. The intense cramping went away. As I've said before, surgery is really good at addressing the endo head on, but it doesn't address how our body copes with the pain. PPT really helps that second part. I can imagine it's gotta be discouraging to go to a specialist and still have symptoms and being given some good options, but there are some things that surgery just can't address. I swear, please look into it before getting really discouraged about your progress! For me and several others, PPT was the turning point in realizing that we're not at the mercy of our bodies or our doctors. It's relatively inexpensive (insurance often covers it), it doesn't take a ton of time to see improvements, and it's not permanent like a hyster! You'd have nothing to lose by trying it. If you need help finding a good one, I can help you track one down! Or ask him if he knows of any that he's worked with the past.
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Post by semicolon on Feb 24, 2012 15:24:13 GMT -5
It is very depressing to feel like no one can help you, besides the extremes of of a hysterectomy. My specialist has it on his website that if endo is removed and pain persists, then it is not endo. That tells you that many of us have so many things going on in there it is tough to know what will help. That statement on the website worried me, but it also made me try to be realistic going in and not expect this doc to be a superhero and solve 20 years of abdominal craziness. I have to remind myself that the current craziness is no where near the prior disaster going on in there.
I don't recall Jess, have you tried diet changes? I am teetering on the edge of trying to go gluten free and try some PTT (Karen is just so persistent!!). I know some folks try ablation for bleeding, it sounds horrible to me but you could ask his opinion on the procedure. I'm frowning as I write this, so it can't be good!
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Post by JC on Feb 24, 2012 15:43:46 GMT -5
haha I was gonna wait to get on my "natural treatment" soap box but I will at least comment that it's definition an option if you haven't considered it already. It's NOT easy by any means but if it works for then it's absolutely worth it. I have been gluten free for about 9 months now and I have never felt more amazing in my entire life. I think being diagnosed with celiac disease was a huge blessing because gluten was the root of ALL my health problems. My endo even disappeared. I have zero endo symptoms and I used to get daily pain and couldn't even tolerate sex it was so damn painful. It's definitely worth a second thought if you are reluctant to go down the medication/surgical route.
I hope you're doing OK today. It's so much to think about and you'll probably need some time to sort out your feelings before addressing all of this. Love you girl!!! Vent to me on Facebook if you need!
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Post by jessabug on Feb 25, 2012 23:57:46 GMT -5
I feel somewhat apathetic today to be honest haha. I think basically a hysterectomy is not an option for me so I am going to find other ways to cope. So far the acupuncture seems like it may be working, and the Nuvaring has helped immensely with the cramping. Hopefully those two things will do the trick, but if not, then Karen I will definitely go for PPT as my next shot at a treatment option. If that doesn't work, then my action plan will be to start seeing a palliative (huh? I always forget what they're called but what I mean to say is a pain control specialist! haha) doctor. Either way, I'm going to be doing everything I can to get this under control because I will not have a hysterectomy in my 20's. Period. (punny bit of irony there? haha?)
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Post by omaklackey on Feb 26, 2012 0:27:24 GMT -5
I'm sorry you misunderstood. Desperation has lead many woman to hysterectomies in the hope of a cure and its just not. I Just heard about a 23 year old that did it And it scared me. Dealing with all of this scares me. What things we try to do to get help scares me. The way you have been talking in these more recent posts is terrifying because I know how desperate I feel. Maybe you aren't as bad as your post sounded but it seemed pretty awful and it makes me angry at the doctors. I guess sometimes I need to be mad at something and the doctor seems a likely target. I guess it is nice he did send you an email
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Post by Karen on Feb 26, 2012 10:57:47 GMT -5
I can sense that emotions are running high right now and would ask everyone to take a step back. Let's try to be sensitive when talking about sensitive issues, and let's focus our efforts on confronting endo rather than confronting each other. If there's anything else that needs to be said about this, please send a PM.
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Post by JC on Feb 26, 2012 14:07:15 GMT -5
I think there was a misunderstanding on what Redwine was saying. He wasn't saying that there was a guarantee that a hysterectomy will get rid of ALL pain. He was saying that removing the uterus will get rid of UTERINE pain. In that sense, if you don't have a uterus, then you can't have pain in the uterus. It's not a cure for endometriosis, it's a cure for uterine pain. He seems to be certain that the pain you are feeling is coming from your uterus which is why he suggested the hysterectomy in the first place. He even went on to mention that although it's an option, it's not the most ideal since you are so young. This is all very stressful. We are all fed up, tired, and frustrated at how we continue to suffer with this disease with no end in sight. It's hard to go to an expert and not be completely "fixed." We have to understand that there is still a lot of research that needs to be done. We don't have the treatment we need yet. The best we can do is try to take charge of our health, see the experts if we can, and then try to cope with the symptoms if things don't work. It's frustrating and agonizing but that's all we can do until some clever researcher comes up with a better idea. Dr. Redwine is one of the best we have. He's not a miracle worker and sometimes even an expert can't fix us. He's not a bad doctor. He's doing the best he can do for us with the technology that's currently available. Jess, I am glad that you are looking into other options. A lot of us have had success with less known treatments like diets and PPT! We shall lure you slowly to our side.... muaahwhahahaha :-P
I love us endo girls. We're in this fight together!
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Post by jessabug on Feb 27, 2012 2:10:03 GMT -5
Lol Jenaya I looove youuu. Lots and lots. Your spunk makes me giggle. On a less giggly note, though, I am crying right now for the first time since I read Redwine's letter. I was kind of wondering where those tears were... it felt odd that I seemed so emotionless about it. I guess maybe it was some bizarre defense mechanism. But a friend asked my why I was being so weird this week, and not being funny like I usually am, and so I told him, and I guess it kinda lead me down the path to "oh, yeah, I guess that really did happen." lol. I'm just kind of sad that I have to figure this out and learn how to live my life in this different way. And I'm sad that I have to do it so far away from my parents, I feel like I really need them right now. The funny thing is, I've always been so independent, but this is the first time I've wanted to move home in the 5 years that I've lived on my own.
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Post by painttheseconds on Feb 27, 2012 12:05:11 GMT -5
I know I've already told you, but I wanted to express to you how sorry I am that you have to go through this. I can't imagine how hard it had to be to read the letter that Dr. Redwine sent you. I just want you to know I'm here for you and if there is anything I can do to help support you through this process let me know. You are such a strong courageous woman so I have no doubt that you can get through this.
My situation with Redwine in no way compares to yours, but I felt similar after reading his letter. I just felt numb and there was a part of me that just wanted to throw his letter in the trash and ignore what he said. It took me a few days, but I did cry and eventually I started to feel a little better. Sometimes I find that it takes time to grieve and that's ok. I know you will deal with this situation in whatever way feels appropriate for you.
I'll be in your corner every step of the way cheering you on. =) Take care of yourself and please let us know how you are doing. Thanks again for being so wonderful the past few days. It's really eased my mind talking with you.
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