Mental Health is not an issue here

 I have a cystocele.  As I understand it, my bladder had dropped due to connective tissue that weakened or tore, which lets the bladder get into an odd position.  My mother had the same thing and as I understand, sometimes the bladder can literally fall out of the body.  For a while, around the time I was having symptoms (bleeding) that got me diagnosed with cancer, I had to have a round donut shaped ring called a pessary put up my vagina to keep the bladder from falling out the urethra.  It also comes in other shapes.  I've since stopped having the pessary put in and removed for cleaning every 3 mos. because it was just too painful.  It's easier to get UTI's when you have a cystocele, but I'd rather deal with an occasional UTI than the pain of the pessary change. The condition hasn't seemed to get any worse since I stopped having that done.

I think the rectocele is somewhat similar to the cystocele.  It happens when the rectum falls due to damage in the supporting tissue between the vaginal and the rectum. 

I had a cystoscopy (where the doctor checks out the inside of the bladder) in 2010 to see if there was a "communication" (or opening) between the bladder and the vagina or the bladder, vagina, and rectum, as any hole in between those places can cause bacteria to get into the bladder and cause a UTI.  Nothing definite was found, although one spot at the top of the bladder was a little questionable. 

I'm not sure if a rectocele alone can cause UTI's or not, but if you get them frequently, it's worth asking.

Did you ask your husband how he knows a hysterectomy isn't painful?  He never had a uterus.  If he ever gets a kidney stone he can't pass, you can tell him the same thing.  Men are screaming when they get them.  I used to work in an office position in an ER and I could tell when men had kidney stones or had a death of a loved one because the screams were very similar, probably a little worse with the kidney stone.

My pathology results from my cancer surgery took 10 days to get.  My GYN/onc. thought I had ovarian cancer but he had the results reviewed by the hospital's tumor board, and their consensus was UPSC instead.  I had stage IVb UPSC with cancer in the uterus, both ovaries, the omentum, and a small spot on the small intestine.  I've since had a recurrence almost 7 years later where the cancer came back and wrapped itself around the outside of the ascending colon plus got into the peritoneum and the paracolic gutter.  I'm in remission for the second time.

I know the results take too long to get but maybe they're going before a tumor board at your hospital like they did at mine.  And probably most of the patients they see are cancer patients, so you end up in a long line of people who are waiting just like you are.  Throw in a vacation or two and the line gets longer. It's better to get the correct results than a decision that's rushed.  Hope it goes as well as possible when you do finally get them. And don't assume a higher stage always means a worse outcome.  Sometimes it does, sometimes it doesn't.   

Northwoodsgirl said:

Fragmented health care and lack of care coordination

Oh SaltyCandy14! I can so relate to your experience, frustration, feelings and questioning. What we need is access to another uterine cancer survivor through the clinic, who can advocate, educate, explain and help us to understand the timing, process, treatment plan so we can manage our own expectations. I have often thought that if I had even one other woman who was a uterine cancer survivor to talk to in that period of limbo between being told you have cancer and through the whole 6 months or more of treatments. Some clinics and hospitals have “navigators” as you may know that help women with breast care. Health care is exorbitantly expensive and the clinics and hospitals mostly don’ t even have electric medical record systems that are connected so the various interdisciplinary care team can see what has been done and what is yet to be done. Thus sometimes we get communications from the clinic or hospital or insurance company where “the right had doesn’t know what the left hand is doing.”  This contributes to our anxiety and the escalating costs of health care. I sure hope your fever resolves soon. You know it is odd, we are told we have a life threatening disease but everyone from the schedulers to the doctors act as if it is “business as usual” because for them it is. They know what the process, timing and standard of care is ....we don’ t. We feel scared, vulnerable and angry. Why me? Why cancer? Why now?  Will my body ever be the same? Will my life ever be the same? Each  of us survivors have experienced this feeling of being in limbo and sensing that we need to start surgery, chemo and/or radiation ASAP- but the “system” doesn’t have the same sense of urgency. The wait is excruciatingly hard.... It’s kind of like the movie line-“I’m so angry and I’m not going to take it any more!” ( The line is from the movie “China Syndrome “ if I recall correctly. )

 

My hospital actually does have a program which you can request to speak to a patient with your cancer. I signed up and was trained for it. You know how many called I’ve gotten?  Zero!  I don’t know if they don’t publicized or if people don’t call. I’m fortunate though because everyone at my hospital from the custodians, receptionists, technicians and docs are mostly kind and compassionate. Somehow they’ve instilled that kind of culture. Yes they can be frustrating to deal with sometimes but I’ve never been treated unkindly. 

saltycandy13 said:

thanks everybody

for all your comments and stories.  helps me a lot feeling I am not alone in my feelings.  Sometimes I get the feeling I'm a Drama Queen or I think I am royalty feeling the way I do, then I discover that everyone is in the same boat.

Aside from the snooty women that are barely the age of consent answering the phones, they should have the problems we older women do and will have if they even live as long as we have!  That is my only comfort at times.

I guess we are on our "own."  But Karma does prevail and I am a firm believer in that.  For every nasty person who ignores our calls or doesn't give the right answer, they will get "theirs."  And rightfully so.  We are human beings and have the right to quality of life and mental well being just like anyone else.

 

With that said, I am going online shopping for a new pair of Christian Louboutin shoes.  Never LOSE YOUR SENSE OF HUMOR.  We are born with that little spark.  Never let that spark lose it's light.

xoxoxo

Karen

Hello Saltycandy13,

I saw your post and hope Iam doing this right? A newbie here or have been reading for a few months. I feel the same way too! My surgery was November 17th and a total hysterectomy, vaginal with three little cuts. Everyone is different in their experiance but they kept me overnight and released in the afternoon. I was a bit sore but they gave me Tylenol for pain in the hospitol and sent a perscription home with me for pain. Which I had almost no pain. It was amazing! Still taking it somewhat easy at this point. So hoping your experiance is the same. 

Weeser1