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187666 tn?1331173345

Just being sensitive...

Did anyone else see the note posted on the doctor forum about only post there if you have cancer? I understand that they want to save the 2 questions a day for folks with cancer. But when you don't know and you're scared spitless, you aren't thinking as clearly and you want help. I guess what bothered me was the way it was posted with big letters and exclamation point. Then tell folks don't post here if you have cysts, go to the gynecology forum. Just seemed a bit harsh to me. I've never posted a question there but it kind of hurt my feelings :-(  I know, I'm just a bit emotionally goofy right now.
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Avatar universal
And also thank you all for your kind thoughts...
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Avatar universal
Went over to the expert side to see if doctor answered lilbubba's post and saw MedHelp took down their bulletin. I guess they understood it was creating too much controversy and it was time for everyone to move on.
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329994 tn?1301663248
I am really sorry that my post came across wrong. I was not at all saying that Becky, Marie, and Katie were saying things to me. I think I was thanking them for reminding me about the doctor post.  As I have said often, I have received great advice and great support on here (more than you can even realize) and have admiration for all of you fighting this terrible disease!! I apologize, I truly did not mean to offend anyone on here.  

Colleen
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Avatar universal
Yes, you are correct, and that's what my situation was too.  I just didn't know until the ovary (only had one left) was removed and biopsied.  I was one of the lucky ones in the 99% group...but I was scared witless until the surgery.  Like Becky said above, I didn't even think that yet another cyst could be ovca, but it was complex not the usual simple.  When you google complex cysts, you all know what comes up.  Everyone here was super nice to me and I learned a great deal about all the issues of hyster, bios, etc.  
I just noticed that the word "cyst" does appear in the Hysterectomy section, at the top.  On this forum I often only post to those who land here and have one ovary and are wondering if they can conceive.
We've had similar debates like this in the past.  
I am sure this issue will all work out fine, because we are women and WE ALL ROCK!!   Jan thanks for saying what you said.
Have a good night everyone.
Peace!
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356929 tn?1246389756
I'm rather hesitant to chime in again and I don't want to beat this into the ground , but I do have a question ..First of all; anything and everything I've learned about OVCA and related issues I've learned from this forum, either from folks dx with OVCA or gals like myself that have been spared that horrible dx.
     Having read all the above posts, I'm confused/concerned with some posts suggesting  the idea that "cysts" have been lumped into a category that indicates a benign condition only. Isn't it true that some cysts certainly are malignant or can become malignant? Isn't it true that even with US, CA125 , the "absolute" is found only upon biopsy? That was the reason my Dr. insisted on further investigation (plus I'm menopausal).
     The reason this concerns me is that I'd hate to have someone dismissed because of having "only cysts", only to find out later, it is indeed something much worse.
     I was/am so grateful to have found this site and I was encouraged by some of the ladies who did have many OVCA symptoms , but it turned out to be a benign condition. It gave me some hope which is sorely needed while waiting for results of tests. And yes, I sincerely plan on "paying it forward" on everything I've learned from this forum. Again, many thanks to all of you.
    
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282804 tn?1236833591
I was going to post this earlier but did not, but now that Becky has posted, I must say that I think it was quite unfair of you to make it sound like Becky, Katie and Marie were saying things to make you feel like you shouldn't post.  I reread their posts and find that to be an unfair assessment.  I know all three women have reached out to others on here more times than I can count to help those who did not know what to do or to comfort those that received bad news.  

I think this whole da*n thing has gotten way out of control and we had better find some way to contain it before this forum implodes!!
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135691 tn?1271097123
This certainly turned into quite the discussion! There was never any question about the posting on THIS forum...it was all about whether or not the 2 questions allowed per day on the DOCTOR forum should go to those who have been diagnosed with ovarian cancer. To say you feel unwelcome on this side...well, I'm sorry you got that impression. Like I said earlier, I understand why you post here and would hope you continue to do so.
Becky
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Avatar universal
I agree with you puppyluv which is why women with cancer should have those two questions.  There may be something you forgot to ask your  oncologist or there is something for which you want a 2nd opinion and Dr. Goodman, God bless her, gives her time and can make that a reality. No offense to those who are not diagnosed but it is really importnat to reserve those questions for women who are fighting for their life.  
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Avatar universal
What we need to remember is that medhelp is trying to make rules that it thinks is best for the majority of the people here. They do not know each member's personal situation...so they are trying to help as many people as possible. But truthfully..I am here looking for some answers for someone I really care about who does have OVCA and the help I find on that side is minimal.

When I read the posts on this side of the forum I find it so much more informative, helpful and supportive than the expert site. The doctor may say you should investigate further your symptoms, but the women on this side will say get your butt into a doctor and you are not wrong to try to find more answers. Isn't that what the women with cysts looking for...that it is ok to make noise and say listen to me because I am scared.

I was on the border of this issue until I remembered a recent situation I have read about here. There was a member looking for some answers, when another person here...someone who has NOT been diagnosed....said you need to do something NOW. That person finally did and found out indeed they had stage 4 OVCA. Without that help from a very valuable non-ovca person who is suffering from cysts...who knows how long before this person would have been diagnosed. Each and every members post is valuable here whether or not they have OVCA...so Colleen to say you shouldn't post...please that would be a grave mistake. Everyone is needed so that everyone's questions can be answered.

The other thing to remember is quickness....I feel like people have their questions answered in a more timely manner over here. You can post a question and receive many answers within minutes or hours but at very least a day. But the poor doctor is one person...not many people, so she only has so much time and if you look some of the questions on the expert forum are sometimes not answered for up to a week. If I were looking for quick answers..then the people here would be my first choice.

I think the question of how terrible the or good the policy is becomes a mute point...it should be how strong will all you remain together to fight this illness no matter what your diagnosis. Fighting over this policy is not going to bring about awareness to this disease. Fighting only takes away from the best thing about this place...the love, support and information it offers.
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389393 tn?1207442358
Sorry if I have offended anyone with my comments.  I truly value you all and thank you all for helping women like me.
:)
God Bless
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389393 tn?1207442358
To: All
I think that this post has turned into something more or something it was not meant to be.  I have been reading a couple of past threads and as Jan214 said there is some"divisiveness".  This debate has now turned into whether or not some of us belong here or not.  I know alot of you are saying that those who have not been dx with OVCA can post here but I still feel like there is way more to this thread than we are admitting.  I for one can say when I first posted here I was terrified, confused, and alone.  My Dr.  was throwing the "C word" around and he gave me the CA 125 and was scheduling me for an emegency lap.  I had no one to talk to, not even my own DR.  I came here and I found peace from so many of you.  I was a bit hesitant to post so that is why in caps I put that I was not yet dx.  I feared rejection from those who were dx with OVCA.  But the first person who wrote to me was Shelly.  Then so many more,Lori.Jan, Carol, Gia, Donna.  You all made more sense than my own DR.  Without you I would have never known that cysts hurt, can cause pain on opposite side,  etc.  I am forever grateful to you all.  I do not think that I have OVCA, there is only a 1% chance I do.  But now I am calm, I went and got a second opinion, and I know that I am not crazy.
I will say one thing.  Some women do come in throwing the C word around over a simple cyst with no other symptoms.  I have not even been dx with OVCA and I find those posts annoying!  So imagine how the women who have been dx feel.  No offense.  It is important that women also do their own research.  I did.  This forum is so necessary women like Kimmie are a perfect example of the power of the women on this forum.
Love
Marge
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Avatar universal
I lurked before diagnosis and did not want to post so I would not take away from others with ovarian cancer.  It was weird for me to really think I did have ovarian cancer so I did not even post on this board because I did not want to take up the time of those who were going through so much. Since that is the case I think MedHelp did the right thing and that the two questions should be for those who have ovarian cancer since like someone said noone is a fortune teller and the ones with ovarian  cancer do need timely postings.  Just my opinion.
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Avatar universal
It's a sad commentary that in order to "qualify" to post a question on the doctor's side forum, we need to have been dx with OVCA.  I can appreciate all those who do not or cannot reach their doctors or are unable to get expedient answers to their fears. Our sensitivity is heightended by what we are going through, the drugs make us crazy, and we live in daily fear of the "what if's".  Though I think Dr. Goodman is wonderful (I, too, have met her); I feel "at home" when I can jump on the forum and talk with all of you whenever I want.  In no way am I minimizing anyone's fears, the severity of their disease, etc.  But we can do so much more for one another if we just don't beat this issue into the ground anymore. Love to all, Judie :)
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167426 tn?1254086235
Reading your post, I want to tell you something, as I know many of the women on here will also back me up on, we ask that you be proactive in searching for the answers to your health.  These women cannot and will not diagnose your illness, only  the facts derived from scans, blood work, surgery, path reports can do that. That is why with ongoing posts about the symptoms that each woman is feeling, they usually get the answers about second opinions, or from true life experiences that they have faced that are comparable to those posts.  The side effects of a chemo , that one faced, will alert those inquiring about the same drug,  how were those side effects handled?, Some of these ladies are much more knowledgeble about certain things, that they themselves faced than others.  One of the things that all want to happen is to inform,  as many as possible to the early signs of OVCA,  nothing makes them feel better than to have a woman come back and post that her mass was benign, ot that if it is cancer that it was caught early. The doctors simply want to deal with those that already have the dx,  that is their expertice, Until you can get the answers to your posts about things that you are feeling,  you need to seek out those questions from a dedicated medical person. then come back and compare those findings with the forum, the doctor on the expert side will then answer you if you do indeed have OVCA, until then it is your responsibility to get those questions answered by medical personel in your own envionment. These ladies have been pushing those that come to them for answers to seek that help.  By law I cannot even give anyone an asperin without a doctors order.  So that is why the experts can handle those questions about the actual disease, and the forum  can only offer support in  a limited way.  It is all right to post on the forum about your concerns, no one will tell you not to, but for you to think that any of us can give you expert advice is not logical.
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282804 tn?1236833591
How about PLAY NICE AND GET ALONG
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282804 tn?1236833591
I hope that medhelp will set up another category for questions about ovarian cysts.  It obviously reaches a very large audience as almost every woman has had cysts at one time or another whether she knew it or not.

I have asked many times that the people who do not end up with cancer, or those still serarching to stay on the forum and help others who come behind them because as a person with cancer I CAN'T answer questions about all the many things you all go through.  I did not spend two years getting jerked around, I didn't have to go through 100 tests to find an answer, I didn't have to put up with the humiliation of begging Drs to take me seriously.  I just DON'T know.  I know about having ovca.  I can answer all kinds of questions on that, but I don't know the first thing about endometriosis or whatever.  If you have been coming here getting answers than you owe the people here and you should "pay it forward".  This is a community where a good many of us have "lived" for a long time.  We want to help those who come here looking for answers, but we can't do that if everybody jumps ship.  

Instead of complaining about this site or how bad people are why don't we try and find some constructive ways to help MedHelp help us.  For God's sake people, can we please just go back to the playground rules we learned in 1st grade:
PLACE NICE AND GET ALONG.  To do that we have to work together to find the best way to help ourselves and those frightened people who come here looking for answers.

I am just tired of all of this.  I don't know what the answer is for this but we cannot continue to have these issues that cause so much divisiveness.  Any thread that has people wanting to quit posting is not a healthy discussion thread.
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329994 tn?1301663248
Thank you for your comments.  I honestly did not realize the doctor forum was only if you had already been diagnosed with OVCA.  I have been having my symptoms for almost 2 years and I just wanted some answers. I posted on the doctor site to ask her what she thought about my symptoms and ultrasound findings. I wanted to know her opinion on whether to pursue it further. I realize that she does not see the "complete picture" and gives the best opinion she can give given the circumstances.

I have read through all the posts on here and it does still bother me that some of the posts have talked about the women having "cysts" and "wanting" it to be more. Who would want that?  I just think that when you have symptoms of OVCA and even if you know that they can also be symptoms of benign cysts - you just want to be sure.  I have read so many posts on here where the women were told that their cysts would not cause pain, bloating, constipation, etc.  when they actually DO. Any many posts from women whose doctors thought they just had normal cysts and put them off for months only to find out that they really did have cancer.   This is their doctors telling them this, so where does a woman go if she needs answers?  It is a very hard situation for someone to be in. and I, for one, was grateful to this site for the fact that so many on here have been willing to listen and offer advice.  How do I say this the right way?  I am still searching for answers and I think for now, unless I get a diagnosis of cancer, I will refrain from posting on here.  I wish only the best to all the women on here, I will continue to keep you in my prayers and check in from time to time to see how you all are doing.  Thank you for helping me when I really needed it.
Colleen
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167426 tn?1254086235
OK  Lets sort this problem out.  the doctor is asking that only posts from women already dx'd with OVCA to post on the expert forum,  I can see that. So the posts to that forum  should be limited to those that are like getting a second opinion for themselves.   "My doctor has ordered this or that for me, what do you think"  there can be hundreds of questions pertaining to OVCA,  that pop up in the worried womans brain, where does she go for an answer?.  The good doctor herself is placing herself on the line when she gives an opinion in answer to those questions.  I admire her greatly.  We on this side of the forum, in giving advice , must always preface it by saying, IN MY OPINION,  Sometimes that is hard to do, I know,  Since we know that all of us are different and no chemo, as of yet, fits all,  we may be tempted to compare notes, and I think that is what most of us do. To clear up the problem with unwanted posts on the expert forum, what can we do to help?  Suggest a new and clearer title pertaining to cysts and concerns , maybe a title like Signs and Symptoms of OVCA,  We might be able to direct some of the traffic that way. Actually the title for this forum could be misleading some of the posters, some of you at times have asked posters to take their cysts , bleeding and other problems elsewhere,  this forum also almost yells, OVCA,  and is populated mostly by those that actually have been dx'd with it. then there are those of you that had the scare, and came out benign,  How to separate them? I say we can't,  unless they can get the advice to seek expert help from someone.  So we push them to get better conversations set up with their doctors. We cannot turn this forum into a select, social club,  I don't have OVCA, and would not use the expert forum unless it was to seek a second opinion for Leslee, just to double check her doctors orders. If I am concerned about something pertaining to Leslee I feel confident in asking you all , have you had this, done that and what happened.  But then a doctors expert opinion is always good also. I would probably search both places.  As I look at this, the experts can offer medical advice  we can offer the support.  Sorry about my rambling.  Marty
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408163 tn?1242949501
I agree Casey. And Mary, I like the new word you inveted!!! Enraptured.
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Avatar universal
Yes there is a difference between the advice given on the Members Forum vs. the Expert or doctors forum...they are doctors!

Not that I don't think everyone here is very informed and helpful, but sometimes some direction from the very kind and competent Dr. Goodman, gives some the reassurance to question there own doctors and continue to pursue the a real dx.

That's my point, and those with real symptoms (septated or growing cysts, elevated CA-125, extreme pain, extreme bloating, bleeding or bloody stools, etc. etc.) should be allowed to post and I presume they will be. I just don't like the idea that Med Help would do anything to discourage anyone with real concerns from seeking medical advice before a diagnosis.

This is a unique place, because they do take it seriously, which unfortunately most of the GP , GI and Ob/Gyn population doesn't and therefore the reason for so many late stage diagnosis! Read some of the old posts and see for your self!
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106886 tn?1281291572
I have posted here since approximately 2003...I just wanted to say how much I appreciated all of your comments. I don't usually get so (cannot think of the word I am looking for...) 'enraptured' by a post...I may have just invented a word... But, I just wanted to let you know how much I appreciated all of the elements of your post.

I also will be eager to hear how things go for you.

Sincerely,

Mary
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408163 tn?1242949501
Wow, I have a myriad of feelings from reading all these posts. I was one of those people who posted on the expert side to propose a question to Dr. Goodman. Some of us are not fortunate to have proficient docs in real time, real life, outside the forum. As a nurse I know how to advocate for my patients. As a patient I am as scared as the next person. When I researched results of my ultrasounds, complex septated ovarian cysts, I was directed to this forum. I was only looking for information. I did not ask or "search" for ovarian cancer. I was being proactive for myself as I am for my real patients.  The search engine is what put it into my head.
This week after listening to Dr Goodmans advice on here, I had the pleasure of having an appt with her at Mass General. I am fortunate in that aspect that I live in the boston area. Let me say one thing. She is as wonderful in real life as she is on here. She gave me the exact same info face to face as she did in type written print of course with a little more.  She did not tell me to "not worry" about my complex ovarian cysts. She discussed with me detailed options as to what my next step was. And yes, I need to take more steps. I pray I am in the 99% club, but who knows. After having been put off by my regular OB/GYN, I sought more expert advice. Hence, how I ended up here.
My point being, I know I cannot understand to the full capacity the dx of ovarian cancer, but I do understand the fear that it provokes in the human spirit.
I pride myself on being an intelligent human being. However, sometimes when we are in the hot seat and nobody is taking our symptoms seriously, we just sort of accept what our docs are saying as the end all be all.  Well, if the expert forum saves even one life, then I say it is all worth it. I went to the GYN forum, but felt my questions weren't related to what the women were asking on there. There were a lot of pregnancy questions, yeast infection questions etc. I do think people need to see their docs to get started, but if they can't get past that level of initial care then they need expert advice.
So there, I have vented somewhat. I don't know what the answer is, maybe they could add a site for those of us who are holding our breath waiting for a diagnosis. Maybe like someone else said, a different level of practitioner could  screen the questions. UGH!!! I don't know.
I do know, this is an invaluable forum and all your ladies and gentlemen on here are intelligent and have offered me valuable insight wheather you know it or not. You are all in my thoughts and prayers.
God Bless!!!!
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Avatar universal
I sort two different opinions over a period of months before I was told I had Stage 4 Ovca... and that was 'one on one' with both Doctors, so how on earth are the Doctors here supposed to be able to say  yes or no with just a description via the computer. I guess they can only suggest, but then to get to the bottom of a problem it's always best to SEE a Doctor... have a proper examination etc. Even then it's hard enough to get the right answers. I tend to agree,  that those who don't have a dx of ovarian cancer would be better to SEE a Doctor...... or two.... and push for the proper tests, rather than try and get the right answers here, which may not be possible.
I hope everyone is having a good weekend, and feeling well...hugs...Helen...
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Avatar universal
My two cents: I understand where the poster was coming from. But think of it this way, most women that have been diagnosed are seeing many doctors who tell them what is going on with their bodies. For women who are still in the process of trying to figure out what is wrong with them, or are having a hard time getting doctors to listen to them (and it seems to happen alot that women who are really sick cannot get proper care), having someone help them understand what might be going on is a blessing. Also, most doctors wont respond in a forum unless it is about cancer.
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