Still no date . Frustrated and in pain

Hi ,
I went for a consult at a major university in my state. It turned out to be $162.00 cash plus all the gas/meal expenses. They didn't do any special tests at all. Just a "normal" pelvic exam and a urinalysis. I am wondering why I was even sent there.

Now instead of 2 doctors debating what to do with my case , I have 3-5 doctors debating and I am still in limbo , bleeding since April 15 , even with A D&C , Hysteroscopy and being on BC pills !

Plus , now , in addition to the pelvic pain , my legs ache from the hip bone down to the feet.

Sympathy greatly appreciated. Yes , I am feeling very sorry for myself.

I'm so sorry.

I know how you feel. I hope that you find out soon what to do.

If you're looking for a hysterectomy, demand it from the docs. Once they get over their "it's not fashionable" or whatever else is holding them back, they might just settle down and get it done. Sometimes it takes a frustration, exhaustion, and raging hormone infused temper tantrum to get them to get things done.

My Mom has had two surgeries through her mesh, my Dad three. It can be done, but one should have it done by someone that is not afraid of the mesh. (BTW, all five of those surgeries were full-blown emergencies, the docs get over fear quick in those cases.)

I am so sorry you are going through all that. It is terrible that we have to fight so bad to get taken care of when we are in pain. I hope they help you soon! Best wishes.

WHAT NOW ? I am not even sure where to post my threads anymore !b

So , I woke up 2 days ago to a message from the referral coordinator for my doctor.She said "Dr._________ has referred you to a gynecological oncologist
. The appointment it on September 16 at 10:30 a.m. . ( About the same time I was supposed to go to my regular gyn. to discuss options ! The referral coordinator could not give me any information , so I had to wait for the doctors nurse (I had to call her back myself to find out what was going on), who had to find my records ( the coordinator had it)

An hour later , she called back and said"no malignancy , it is just that the gynecological oncologist is more used to difficult surgery with adhesion's and prolapses and other conditions ( probably my diabetes and being overweight and all other chronic conditions).

SO ...for heavens sake , why didn't they tell me what the referral was for instead of making me wait . Plus , I was the one who had to initiate the communication to find out what was going on ! In addition to that , apparently after seeing my operative results from the hernia operation my regular gyn. decided he and I would skip our talk about options and he would just send me to the gyn. oncologist ! The office wasn't sure if I was coming back to talk to my regular doctor again. In fact they insinuated that I am now in the oncologists hands , so they canceled my appointment with my regular gynecologist on the 16th since it is about the same time as the new appointment.

They said very sweetly "call back if you have any questions "!

I am so confused what questions would I ask if I call back ? I need more advice and ideas than ever ! Please !

Holly

OMG! How AWFUL for you!..I feel your pain. My journey started 05/29 with my primary Dr. The non stop referrals, zillion tests, CAT and MRI took all summer. I am now scheduled for 9/22 and cannot WAIT!...I know some other Sisters already told you, we have to take a stand. WE have to be advocates for ourselves, not just be shoved through the system on their terms. (LOL, yes I'm a little bitter, but this cld have been over months ago, if I had said enough already)...Good Luck to you for a speedy surgery and recovery!

I called and talked to my gynecologists nurse today for quite a while and told her the whole situation. She said that she is going to bring it up at the next staff meeting and tell everyone what can happen if the communication lines are not strict enough. She said that a nurse should have called me first to explain and then the referral coordinator should have called.

I didn't tell her that I was angry ( I wasn't by this time ) , but that I did have some fear and panic because of the slip up in communication.
She totally agreed and said that they need to talk about procedures and continue to improve their system of communication.

I am so glad that I called and thank you for the support in encouraging me to stand up for myself. The nurse said that I just helped many other patients avoid this scary intercommunication situation. That made me feel really good and very empowered ! Something that I need very much right now. God bless the nurse who took the time talking to me about this !

Also , I found more about the referral to the oncologist and that I can request that my regular gyn can attend the operation to observe or assist. ( I really want this as I would feel better if my reg. gyn is there as I have started trusting him and with my childhood sexual abuse problems this is so important !)

Thank you all for your support and I will keep posting updates on this thread. I never knew what kind of journey this was going to be . Will I ever make it to the castle , or will I be stuck on the other side of the moat with no drawbridge so that I can enter ? Saga to continue later. . . .

Holly

	Quote:
Will I ever make it to the castle , or will I be stuck on the other side of the moat with no drawbridge so that I can enter ?

Holly
I know how you feel. We see so many make it to the other side and we have so many delays. I often wonder as well if I will ever make it to the other side. Maybe the drawbridge will never come down to allow me to enter. In any case, I bet you make it to the other side first!!!!!!
Hugs,
Suzanne

To all you ladies out there my partner comes along with me and makes the doctors move their tails along instead of sitting and debating about things.Doctors seem to think they know our bodies more than we do.So if you have someone to go with you either a partner mother etc that can stand up for you because they know the pain your going through take them along.Im now waiting for an urgent operation because of whats happening to my body.From by bottom half down im in pain all the time even when sleeping waking up with sore hips and back.Mine is caused by a rectocele and cystocele.
Goodluck Everyone.