|
Post by lizzylou on Aug 19, 2010 20:33:55 GMT -5
A thought occured to me tonight. Do you ever feel/think we know more about endo that some of our dr's? If you think about it, OB/GYN's learn about a ton of issues with women's bodies. And unless they specialize in endo they probably don't pay too much attention to it since the majority of women don't get it.
I know when I figured out I had endo, I read just about anything I could get my hands on regarding the subject. We all get on here and discuss weird symptoms and things that we all get. I think maybe because we are all hungry for knowledge on this subject that sometimes we are possibly a bit more aware of what goes on with it.
Is that an arrogant thought?
|
|
|
Post by Karen on Aug 19, 2010 20:47:19 GMT -5
Nope, I've felt that with most docs. Some can't even pronounce it!!
|
|
|
Post by hellsbells on Aug 20, 2010 2:41:03 GMT -5
I've been thinking about it recently, and I don't doubt that my gynae is a fantastic surgeon and helps a lot of women, but I suppose the thing is they're sometimes too busy to keep up on recent research. It's happening to our bodis not there's so we want to dig deeper and know more, we come across info that they might not have. Not saying it's right, but I think that's the way it is.
|
|
|
Post by lizzylou on Aug 20, 2010 7:22:26 GMT -5
I completely agree. That's exactly what I was trying to express.
|
|
|
Post by cherry on Aug 20, 2010 7:23:36 GMT -5
My gynae was a prime example of this, he's so up to date on stuff and willing to try alternative therapies but seemed pretty flabbergasted by the sheer misery I poured in his ear about the side effects of the GnRH agonists... he's an endo expert to the point that maybe his primary focus is the disease and not so much the cost to the people affected by it. That's my only complaint about him, and it's not even a complaint, he's an excellent doctor. My GPs though... I know far more, and my being informative and proactive seems to be a source of annoyance to 2 of them rather than spurring them into action on finding out more. The last practice nurse didn't even know what it was!
|
|
|
Post by JC on Aug 20, 2010 7:32:11 GMT -5
I feel the same way. I guess if you think about it, this is one of few gyn disorders we constantly research and read about whereas these docs have to keep up on a lot of different diseases other than endo. It just goes to show that people need to take an active approach to their health. We know our bodies best!
|
|
|
Post by lizzylou on Aug 20, 2010 7:40:23 GMT -5
I guess that's another good question, Cherry. Does your Dr ever seem annoyed/frustrated when YOU tell THEM what you know, or point out an alternate method of treatment they didn't mention?
My dr listens to me after she discovered my endo and removed my 6+ ovary. She didn't think I knew what I was talking about, but I obviously proved her wrong. She's a great OB, and she's not accepting any new patients so I don't want to switch dr's when i want another baby in the near future. BUT...She suggested Lupron and said everything will go back to normal after 6 months and it wouldn't effect my migranes. I told her I did a lot of research and some women are having issues 2 years after their initial 6 month trial run. And also, that Lupron makes your hormones surge right away and wouldn't that be incredibly dangerous with my migranes, considering i can't get the hormone out of my body, i have to let it work it's way out?
She immediatly agreed with me and said she hadn't thought of those points. SO....Like Jenaya said, being proactive in our health is SO important.
|
|
|
Post by cherry on Aug 20, 2010 8:49:57 GMT -5
Lizzylou I'm so glad you took up those points as it's so easy to be cowed by doctors and to just let them steamroll you, even if you know things are different to how they portray it. I for one had recurrent headaches on the GNrH treatments and your doc shouldn't be offering assurances that she can't back up. Lupron etc has far reaching effects. Some medics are just hasty to get you on 'something', because lets face it, endo is a bitch for doctors as well as the sufferers, given that there's no cure, no proven treatment, and everything they use has potentially nasty side effects that can outweigh the benefits. But really, do they have to hustle you off because they don't quite understand it? My doctors have seemed pretty peeved when I've tried to discuss rather than just be told. And believe me this is back when I just wanted them to understand whereas these days I'm more likely to press my point, being more confident in myself and in knowing my body. I absolutely respect their knowledge and experience as doctors but some are egomaniacs and don't react well to proactive patients (these are the same docs who had earlier praised me for knowing myself and for being right about problems I had ie when my first gynae tried to tell me that my endo was cured and that I had IBS... turns out my endo had gone a bit rogue and stage 4'ed) and then you have a doc like my current on-off gynae who will engage you in discussion about treatment and follow up on your hunches (hence we found my endo had progressed and not been cured by GnRH at all) The thing that annoys me is a doctor who won't go and find out. I asked one GP about my HRT once, he was like 'um, dunno' and I had to hassle him to look it up in his directory which was on the desk in front of him!
|
|
|
Post by hellsbells on Aug 21, 2010 5:17:28 GMT -5
My previous GPs were both so reluctant to discuss my health/concerns. You could see them getting agitated when I asked more questions. The last lasy I've been seeing has been lovely, when I've seen her I reckon I've done 80% of the talking! Sadly she's leaving but there are other good doctors at this place so I don't mind too much. The whole things makes me want to be a doctor at times, we'd all be damn good ones after what we've been through!
|
|
|
Post by KSA on Aug 21, 2010 14:02:46 GMT -5
As previously stated the docs are not specialized to just ENDO sometimes they are busy with alot of the other female issues. I have been to two specialized that only deal with endo one is a top doc in the field and the other was trained by Dr. Redwine and Dr. Albee top docs in excision. I learned so much from them in my visits with them that I was able to pass the info onto my doc here. With open ears he listened. Not all docs will do that tho. Its sad to see such a huge disease that effects so many women get passed over in research but more doctors are seeing the disease and its better then it was 20 years ago. I find that even talking to the nurses about it gives them a idea of what they can say to other patients with similar problems. I hate to say this because not all doctors have it but some have the G*D Complex. Egomaniacs like Cherry said. Those docs you will prob never get the information thru to them. I think Jenaya should be a endo specialist! She knows the ins and outs with personal insight on it:) She will make a great doctor whatever field she chooses and I know will listen to her patients. Its too bad alot of docs don't listen to us:(
|
|
|
Post by omaklackey on Aug 21, 2010 14:30:39 GMT -5
I love this discussion! I made a point of asking my doctor if he had treated any one else with Endo. He said he had one on Lupron and a few taking their own action (in other words they left probably to find another doctor LOL). He had only seen around four cases and none of them were even close to as bad as mine. My case was by far the worse he had ever dealt with. At least he was honest about it, but he still felt like he could treat it?? weird right? No experience but he thought he was able to handle it. Its an interesting dilemma since there are so few endo specialist. I did a huge study on Endo for a class project, 700 Million people in the world are known diagnosed with endo, 2/3 of the women in the us. And that's only the ones diagnosed, how many more women are suffering in silence? So yeah, we need more specialist is the real answer to our "knowing more then our doctors". Jenaya are you ready to specialisize/ do a fellowship with one of only a handful of doctors like Dr. redwine or Dr. cook? How awesome would that be? Scary, but awesome!
|
|
|
Post by lizzylou on Aug 21, 2010 20:02:22 GMT -5
700 Million? it's amazing with those numbers it takes years and years of struggling for some women to get a diagnosis. I should say that I'm very lucky. I have pain for about 2 years, and once I figured out it was endo, I had a lap to confirm the diagnosis within 2 months. I credit most of that to my pushing the dr for what I knew about MY body. haha I also find when you break down in tears and sob in during the visit because you are in so much constant pain, that helps them want to fix you. But that's an embarrasing story for another time. I guess I'm just floored that so many women suffer with this disease but so many dr's are so clueless as to how to really treat it. There is so much research done on cancer, but practically nothing is done on Endo in comparison. It's sad.
|
|
|
Post by lizzylou on Aug 21, 2010 20:05:50 GMT -5
random thought: I'm convinced my sister had bad endo, her dr in England told her things are 'normal'. Unfortunatly she won't listen to a thing I say because "a dr knows more than me". She's been trying to concieve for years with no luck and amazing heartache. Instead of being active in her care and looking at what I feel is so painfully obvious, she is just blindly listening to her dr and just suffering day after day.
|
|
|
Post by Karen on Aug 22, 2010 18:04:29 GMT -5
I guess I'm just floored that so many women suffer with this disease but so many dr's are so clueless as to how to really treat it. There is so much research done on cancer, but practically nothing is done on Endo in comparison. It's sad. There's a Coalition to End Chronic Pain in Women (I posted in the General Endo board) and it's a push to get more funding, education, etc. in the US for endo and other chronic pain conditions that disproportionately affect women. There's hope!
|
|
|
Post by lizzylou on Aug 22, 2010 20:56:23 GMT -5
that is hopefully, I just wish it got as much attention as some other things did and was taken as seriously. I realize that Endo isn't fatal but the constant everyday pain, and other health side effects sometimes seem just as hopeless.
|
|