New here-Need some guidance

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Hi :)

   I am 30 years old and for a while now I have been having a lot of gynological issues. For starters, My periods have ALWAYS been abnormal and I suffer from PCOS. Im also overweight which doesn't help anything at all. For the past 6 months or so I have had abnormal bleeing such as having a period only to have it stop and start again a few days later. I've also been having large amounts of brown discharge which has never been something I have experienced. My biggest concern is right side pelvis,back, and leg pain. It's only on my right side which is odd but It keeps me up at night because I can only lay certain ways. I went to my gynocologist and she performed a Pap Smear (which came back normal) and a Trans-Vaginal Ultrasound. The ultrasound showed my lining 16mm thick (and it should be 5mm or less). She started me on Provera to shed my lining and the first month I took it, I bled like a butchered pig. I know this is TMI but I had clots the size of golf balls. It was horrible and it continued for 20 days. I was concerned so I called her and told her what was going on with so much bleeding and my right side pain. She told me to take Ibueprofen to stop the bleeding and that the right side pain wasn't a gyno issue. Im really at a loss of what to do. Im trying to find another gyno who will take my concerns seriously but I live in a small town so its hard. I lost my 27 year old sister last October to Cervical Cancer. She went undiagnosed for months because no one would listen to her so by the time she was diagnosed it was too late. I don't want to go through that nor put my family through that again. It almost killed us watching her suffer until the end. I feel like its all in my head and people think Im crazy but the pain is very real and I know this. From what I read online, any time you have a very thickened lining, you should have a D&C done but My gyno wants to wait until I have been on the PRovea for 3 months and then "revisit" it. Am I crazy? Did anyone else have right side pain, leg pain with their diagnosis? I feel like im screaming outloud and no one is listening. Sorry for the novel lol. Thanks in Advance for any replies

 

Comments

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Hi Kitkat

    Welcome, I like your name, so glad you found us.  Those are some concerning things you are sharing and I think we can all say we've been there in one way or another.  I do think you need to see someone who you feel is taking you seriously and is hearing you.  I know you live in a small town but is there a larger town nearby?  Who was your sisters Dr. when someone finally started taking care of her?  Where do you live- perhaps someone on the board can give you a good idea of a Dr. or facility they have used or heard of. 

    When you do find someone you do need to be sure and let them know of any cancer in your immediate family so they can understand why you are so concerned, in addition to all your symptoms and when they started and how long you've had them.  If they are in a different office- take the results of your trans-vag with you so they can read it, along with any other tests, results and treatment(s) you are now doing.

    Now is the time to be a really good advocate for yourself.  Our bodies have a lot of natural intuition and something isn't right- is it cancer, no one can say, and we sure hope it is not, but you need to press forward and find out. 

    The folks on this board are very active and super smart and caring and I'm sure someone will be along shortly to give you their insight and advice.  Please stay hopeful and determined to get to the cause of your problems out of caring for yourself not out of fear.  All will be well.  One day at a time, one phone call at a time, one appointment at a time ok?!  Come back for as much support and info as you want or need.   (((HUGS)))

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Provera

    KitKat51008, sorry to hear what you are going through and for the loss of your sister. Hopefully we can help provide you with some information and experiences.

    I was unfamiliar with Provera so looked it up on the internet to find out more. One interesting thing (among many) I found was this:

    Contraindications

    Provera is contraindicated in women with any of the following conditions:

    • Undiagnosed abnormal genital bleeding.

    Contradindication basically means that it is NOT intended to be used for these cases.

    Has your gynecologist provided you with a diagnosis for your abnormal bleeding? If not - or if you are unsure - you may want to call his/her office and ask for more information. If there has been no diagnosis, you may want to ask whether using this drug is appropriate (as opposed to having additional tests in order to get to a diagnosis).

    If they are unwilling to provide you with the information that you need/want, I agree that getting a second, third, etc. opinion is in order.

    Good luck to you and, like Nellasing said, keep advocating for yourself! Kim

  • Sharring
    Sharring Member Posts: 24
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    Yes...second opinion for sure.

    KitKat...I did have those exact symptoms as well. I actually wound up in th emergency room after months of very heavy bleeding and clotting and severe pain in my lower right abdomen.  i did the whole Advil thing until bottles a day no longer dulled the pain.  What's strange is even after being diagnosed, I never really received a explanation about what was causing those severe pains. I have stage lllc uterine cancer and the pain did go away after surgery thank god. I have since learned that abnormal bleeding is a warning sign worthy of follow up period. There are lots of things that can cause those symptoms but it is NOT normal. I too had som family history and can't help but feel a bit foolish that I let things go so long. Sometimes we have have to pull out the claws and step out of our comfort zone. Find a specialist as close as possible and have things checked out.  You will get piece of mind and hopefully  news for a rapid solution!  Wishing you all the best! Sue

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited September 2017 #5
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    Hi

    Hi KitKat!

    So glad that you found us here and hope we can be of some help. It may be your sister's gift to you that she is going to save your life having made you more aware and alert to possible cancer warning signs in yourself. There really isn't much education about uterine cancer out there like there is for breast cancer. Pap smears don't detect it's presence at all, so just because yours was negative doesn't mean you don't have something going on especially given the other symptoms you have.

    That ultrasound and your other symptoms are certainly concerning and so is the trial and error approach your gynecologist is taking. You have a number of risks factors for the hormonal version of this cancer (there are several kinds, some more aggressive than others) and I think that ultrasound warrants a biopsy at the very least to understand why your lining is so thick. If you are unhappy with your gynecologist not taking you seriously and you are very worried that you may have cancer that is going undiagnosed, it would not be a bad idea to go to a gyn-oncologist as they diagnose women's cancers as well as treat them and would be less likely to take a watchful waiting approach before deciding if you need cancer testing or not.

    Some risk factors for the "garden type" (i.e. most common) endometrial cancer are:

    Early onset menses before age 10; never having been pregnant; PCOS; Diabetes; Obesity; Late onset menopause (between 55 and 60 or later); tamoxifan use; family history, Lynch Syndrome (diagnosed by genetic testing); endometrial hyperplasia

    The right sided pain may not have anything to do with your gyn issues as your gynecolgist feels. It could be something like a pinched nerve given how it's on one side and radiates down your leg, so a neurologist might be another doctor you may want to see.

    Things you can do in the meantime is keep educating yourself about endometrial adenocarcinoma because if it turns out that you haven't progressed to having it yet, there are things that you can do now to reduce your chances of ending up with it. Things like dealing with your PCOS symptoms (are you under an endocrinologist's care for this?) and doing what you can about your diet, excercise, and weight. Estrogen really drives this cancer and fat cells produce their own estrogen in addition to what the ovaries put out and that along with elevated blood sugars and body inflammation can trigger the cell mutations that get this cancer going and feed it. 

    Consider getting genetic testing, even if it's just for Lynch Syndrome. Having it puts you at higher risk for a number of cancers, but especially endometrial and colon. If it turns out that you don't have endometrial cancer now, but you find out that you have Lynch Syndrome, you'd know you'd have to give some thought to having a prophylactic hysterectomy as you approach menopause and your doctor's would be more vigilent watching you for symptoms of it. You'd also know that you'd need to start having colonoscopies at a younger age than others and more frequently. At least there's a screening test for that cancer! Sure would be better than going through the surgery and chemo for it!

    This branch of the discussion board is huge and not the easiest to search for particular information, but there is a lot of informational and eye opening stuff here if you can take the time to slog through it. Do not be timid about getting to the bottom of what's going on with you. You have good reasons to be concerned, so don't be afraid to make doctor's explain their reason's for how they are treating you and go and get second and even third opinions if you are still concerned. There's no being timid if you suspect you may have a cancer brewing that has no screening test for it.

    Good luck!

  • Amatullah
    Amatullah Member Posts: 36
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    KitKat

    Hi.  I agree with MaBound.  And don't EVER worry about what others think or if you might be making a big deal out of nothing.  Hopefully you are.  But just your family history alone is a reason to be more careful and less 'wait and see'.  I had an ultrasound and when they found a thicker than normal uterine wall, they immediately did a biopsy.  I'm older and post-menopause, so there was more reason to worry.  Hopefully yours has to to with hormones and the PCOS, but life is too precious to wait and see.  A biopsy is easy and not much different than having a pap smear.  Tell your dr. that given your family history and the unexplained pain, you would like a biopsy to be sure.  If your Dr. is not willing, get a second opinion.  It's your life and it's okay if you want to be careful and not spend months worrying.  If your dr. doesn't know what is causing your pain, then how does she know what "isn't" causing it.  We really have to be our own best advocate and if you are worried, then they need to listen.  Take care of yourself.

  • KitKat51008
    KitKat51008 Member Posts: 2
    edited October 2017 #7
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    Thank you

    Thank you ladies so much for your sincere words and comfort. I'm a mess and I feel alone in this. I pray that my sister never felt this way while trying to get help. I have an appt in 2 weeks with my family Socorro who I'm praying will listen to me and refer me to another gynecologist. I wish physicians could understand what it feels like when a patient feels disregarded and alone. I'm praying this is nothing but if it's something I don't want to let it grow. I have 2 small children who need their mama. Thank you ladies again. I truly appreciate your love! xoxo