|
Post by tfaith on Feb 6, 2008 10:41:20 GMT -5
i am having a hard time with this. constantly arguing with my family and friends about what i do and don't need. i get yelled at for spending too much money on seeing different doctors and trying new medicines. i get eyes rolled at me when the words "i don't feel good" come out of my mouth. many friends quit trying to get me to go out with them, because i tend to always not feel good. i feel like i am at a constant battle with science, and trying to believe that it will get better, not worse. when i went to my new internal medicine doctor, she told me that i am allowing my health to control me and i just need to get ahold on it. like it is that simple. she barely even focused on my endo, although i know she is not a obgyn, but she kept referring to my IBS and how much pain it can cause....not so much how much pain the endo can cause. but i am still going to give her another chance. she wants to do all this blood work on me to make sure 'it's nothing serious', and then help me with a diet hopefully, and refer me to a GOOD obgyn.... she did get the point that i am in some kind of pain, whether it be from my IBS or endo, every single day. one should not have to deal with pain every single day.
so i would like to know, has anyone gotten in control of their health problems, and if so HOW DID YOU DO IT?
thanks all,
|
|
|
Post by staceys on Feb 6, 2008 12:04:59 GMT -5
Hi Tfaith,
I'm sorry to hear about the difficulty you are having with your support system and you doc. I have not been able to control my health problems yet, but I suspect it will be a long process of trial and error. I am, however, in the process of gaining control by starting the long journey of trial and error. It sounds to me that you are doing the same by seeking different opinions and trying new drugs. Endo, as we all know, is not an easy condition to manage, since everyone is different. It's not like a sinus infection where you prescribe XYZ for everyone and 99% of the time it works. I don't see my internal med doc often, but when I did during the past year I told her about the surgery and that was it. I guess I'm lucky b/c she knows that someone else is managing the condition, so she doesn't try to chime in on what is wrong. I would request a referral to a Reproductive Endocrinologist, not an OBGYN, as they generally have more experience dealing with the condition. My OBGYN told me that I may need a full cut and that keeping my ovaries may not be a possibility. He then referred me to a RE (thankfully) since my endometriomas were so large and since I don't have kids, preserving my fertility was his concern. My RE was like, no way we do it through a scope and we should be able to keep everything. He mentioned that if I had a frozen pelvis then he may have to do a full cut, luckily that wasn't the case. My opinion is that internal med docs are not trained to handle this condition, not b/c they aren't smart or couldn't do it, but they don't have the needed training and most likely are not kept abreast of the recent research of the disease since they handle so many other conditions. I'm sure that the constant references to IBS was a result of her experience and what she sees on a regular basis. I think you are taking the right approach, let her do the blood work to rule out other things and then get your referral to a specialist. After that, you won't have to worry about dealing with her about your endo, someone else will be managing it. Hang in there, I hope you get the needed answers soon.
|
|
|
Post by kb on Feb 13, 2008 0:59:18 GMT -5
Well i am in control of the endo now, just not the fatigue, so the answer is no i havent gotten in control of my health problems, not entirely.
But in saying that the endo is under control. Basically i found a good surgeon and had it excised. Also, diet changes and some herbs that worked for me have also helped a great deal. In particular cutting out wheat helped me be able to walk again without a walking stick.
Sorry for what your going through, can be hard for family and friends to understand.
|
|
|
Post by tfaith on Feb 20, 2008 12:28:51 GMT -5
i think one of the worst parts of it is all the frustration....and knowing that no other person knows what you are feeling....this place is the most comfort i have felt, not the doctors or my family/friends, but an ONLINE message board now i am losing sleep over this whole 'need to wee wee all the time' issue, which i have never had. it just seems when i think something is getting better, or looking up, something happens and it goes down again i think my doctor knows what she is doing, but i think she is really hesitant about any meds that are considered 'mind altering' or whatever. she was warning me about bentyl and that stuff doesn't phase me. then on my darvocets for the endo she is all "we are going to have to sit down and talk about your darvocet usage'.....it just sounded a little on the sketchy side. i had blood work done this weekend, to check my thyroid, the whole B12/iron issue and some other stuff. so hopefully it turns out okay!!
|
|
|
Post by puddleduck on Mar 1, 2008 12:40:08 GMT -5
Hi, I feel that much of this comes down to trust When we are feeling vulnerable, unwell and approach a health professional for advice and help, if they respond with measures which help enough and are also kind and supportive with it, then we can trust them and this helps us trust ourselves to stick with the programme and go forward in hope. The kindness, support and trustworthiness of that person are paramount-indeed, far more significant than the actual treatment- especially in chronic conditions when there are no real answers. I don't expect a health professional to cure me: but I do expect them to be there when I need them and to be supportive and understanding. The values of the people who treat and care for us are important, as far as I am concerned. If a medical professional is dishonest or hurtful or does not seem to treat their staff, colleagues and or family members with respect and consideration, or ignores what you feel to be important human considerations, then to me this person cannot be considered worthy of being trusted by me and cannot be a healthCARE provider. When I've been at my most vulnerable, especially postoperatively (I was surgically injured on one occasion and could have bled to death), I came to see it as being on a rope, with me on the bottom, dangling and the specialist at the top. If the person holding onto the rope lets go of what are important issues to me, then they've let go of the rope and I've fallen off It's about trust
|
|
|
Post by cas3332 on Mar 1, 2008 20:53:12 GMT -5
I have an excellent doctor who did my lap back last march of 2007 and afterward he put me on seasonique. This birth control has helped with my cyst shriking beacuse endo did come right back a month after surgery. It greatly helped with the pain I was having!! I have pain that comes on every so often but I don't suffer from monthly pain which was in my pelvic area, my back, sides and down my legs. I am sure the surgery also helped by getting the endo that I had out too. I am still tired quite a bit.
It really is all about trial and error but if you don't feel comfortable with the doctor then move on because the quicker you find the doctor who works for you the better you will feel.
I can understand the friends thing... it's tough when no one understands what your going through. I only talk about my health or whats going on when asked and try to talk about positive things with them. When you focus on the bad it seems that much worse.
Good luck to you and hope you find what works for you so you can feel better!
Carrie
|
|