Feeling alone

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I will try to make this as short as possible. I have had abnormal paps since I was 18. I am now 35. I have had leeps and conizations for dysplasia in the past. I have had severe tail bone, lower back right ovary groin and leg pain. I have had bleeding when I have sex with my husband, periods have been so odd and I usually start with a really brown color looking blood that smells horrindus for 2 or 3 days then I'll have 1 or 2 days of heavy bright red blood with large clots then I will go back to the brown smelly stuff a day or 2 then I am finished. Had an ultra sound that showed polyps in my endometrium lining and on my cervix and had a cyst that came up at the opening of my vagina. I have been going to physical therapy for the tail bone and back pain but it has not helped and today I went to my gyno and he was not the least concerned because of my age and he said polyps are rarely cancerous. Says he cannot perform a pap until it has been a year which is in November due to insurance doesnt wanna pay. In the mean time my right side, tailbone, hip groin hurts and Im extremely dry vaginally and very uncomfortable. I feel as though I should go somewhere else and not wait til november, but then another part of me is like well I'd look stupid if theres nothing wrong and the pain is due to something else. I'm feeling defeated, because I know something is going on just dont know what.

Comments

  • AWK
    AWK Member Posts: 364 Member
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    Ask him for a referral

    To a gynocological oncologist or for a second opinion.  I am reluctant to say this as I wouldn't want to scare you but a Pap smear doesn't necessarily uncover uterine issues.  Mine was clear after we knew I had uterine cancer.  I was lucky in that my gynecologist was also certified as an oncologist but Wasn't a practicing oncologist.  It will give you peace of mind at a minimum and if you need further expertise you will be in the right hands.  I would think based on the irregular bleeding alone your insurance would cover an additional exam or opinion.  Hang tough and keep us posted.  I am sure the other ladies will weigh in too.  Hugs.

  • ConnieSW
    ConnieSW Member Posts: 1,680 Member
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    AWK said:

    Ask him for a referral

    To a gynocological oncologist or for a second opinion.  I am reluctant to say this as I wouldn't want to scare you but a Pap smear doesn't necessarily uncover uterine issues.  Mine was clear after we knew I had uterine cancer.  I was lucky in that my gynecologist was also certified as an oncologist but Wasn't a practicing oncologist.  It will give you peace of mind at a minimum and if you need further expertise you will be in the right hands.  I would think based on the irregular bleeding alone your insurance would cover an additional exam or opinion.  Hang tough and keep us posted.  I am sure the other ladies will weigh in too.  Hugs.

    Jen

    I agree with AWK. Obviously something isnt right.  Don't let anyone put you off.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    AWK said:

    Ask him for a referral

    To a gynocological oncologist or for a second opinion.  I am reluctant to say this as I wouldn't want to scare you but a Pap smear doesn't necessarily uncover uterine issues.  Mine was clear after we knew I had uterine cancer.  I was lucky in that my gynecologist was also certified as an oncologist but Wasn't a practicing oncologist.  It will give you peace of mind at a minimum and if you need further expertise you will be in the right hands.  I would think based on the irregular bleeding alone your insurance would cover an additional exam or opinion.  Hang tough and keep us posted.  I am sure the other ladies will weigh in too.  Hugs.

    agree with awk

    My pap came back clear the same day I got my uterine cancer news!

    Seems like a second opinion is your best option. And, certainly a GYN Oncologist has the most to offer on that front.

    You are not alone. There are a lot of us here to help you along the way. Please push to get the medical care you need. And, come back for support and questions. There are many of us just starting this journey and a whole lot more that have been through it and back again!

    Take care,

    Cindi

     

  • Jen85
    Jen85 Member Posts: 4
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    AWK said:

    Ask him for a referral

    To a gynocological oncologist or for a second opinion.  I am reluctant to say this as I wouldn't want to scare you but a Pap smear doesn't necessarily uncover uterine issues.  Mine was clear after we knew I had uterine cancer.  I was lucky in that my gynecologist was also certified as an oncologist but Wasn't a practicing oncologist.  It will give you peace of mind at a minimum and if you need further expertise you will be in the right hands.  I would think based on the irregular bleeding alone your insurance would cover an additional exam or opinion.  Hang tough and keep us posted.  I am sure the other ladies will weigh in too.  Hugs.

    Thank You

    I needed that hug. Thanks after months of this going on and I finally go to my regular doctor and she does an ultra sound and finds polyps in the endometrium lining and cervix and she acts very concerned. Concerned enough to push for an appointment with my ob/gyn and I get an appointment in a week and then he acts like it's crazy for me to even be concerned I feel aggitated, over whelmed and at a loss. But I agree with you I cant give up because I know my body and this isnt normal.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    You are not alone

    You have found a good place to get support.  The ladies here are great with advise and encouragenet.  I also agree.  Get a second opinion and best with a gyn onc.  Your health and wellbeing is not worth messing around with.  Ask for a referral, you will get in a lot quicker.  What ever is going on, you need a doctor that will get to the bottom of this.  Hugs and prayers, Lou Ann

  • bluesmama
    bluesmama Member Posts: 125 Member
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    Get a second opinion

    I was diagnosed at 40. For years I went to a gyno who also felt the same way as yours when I was 35. It's only because I moved to another city that I found a new gyno. She ordered a biopsy after the ultrasounds showed thickening and a small mass that could have been anything. Some of my friends also had your symptoms and their doctors performed a D&C to take a closer look at what may be in your uterus. At the same time, he removed their polyps and tested it all. You know your body best... your health and peace of mind are worth the extra opinion. 

  • ccfighter
    ccfighter Member Posts: 476
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    I'm here from the gyn boards.

    I'm here from the gyn boards.  Just wanted to chime in and say that a second opinion may help put your mind at ease.  Also, don't let the doctors rely totally on paps.  I had normal paps smears, even when I had active cancer.  I had them every year.  I started to have bleeding after intercorse and went to gYn.  She diagnosed me with ectropion.  Paps was normal.  The bleeding kept getting worse.  Went back.  Still normal pap.  Had ultrasound.  Normal.  A couple months later the tumor was hanging out of my cervix and I was diagnosed with stage 2a.  I was 32.  Trust yourself.  You know your body.  If things don't seem right keep pushing the doctors for an accurate diagnosis and an explanation that you feel comfortable with.  Hugs.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    ASK FOR A REFERAL.  There is

    ASK FOR A REFERAL.  There is no age requirement on when you can develop gynecologic cancer.  That is just RIDICULOUS to say something like that!!  (Actually, that makes me mad to hear something like that!)

    A PAP smear is NOT a guide for endometrial or ovarian cancer, so there are other things that can be done that are NOT a PAP.  My D&C showed I did have polyps - and yes - they were cancerous.

    GOOD FOR YOU for not sitting and waiting.  IT IS YOUR LIFE!!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    ASK FOR A REFERAL.  There is

    ASK FOR A REFERAL.  There is no age requirement on when you can develop gynecologic cancer.  That is just RIDICULOUS to say something like that!!  (Actually, that makes me mad to hear something like that!)

    A PAP smear is NOT a guide for endometrial or ovarian cancer, so there are other things that can be done that are NOT a PAP.  My D&C showed I did have polyps - and yes - they were cancerous.

    GOOD FOR YOU for not sitting and waiting.  IT IS YOUR LIFE!!

    Me Too!

    NoTimeForCancer - Thanks for that passionate response. I thought it and didn't have the nerve to say it.

    I also had a D&C and polyps removed. Cancer in the polyps...

    I'm with you about how out of touch her doctor sounds. He should be fired!

    Can't imagine what a wait and see would have meant for my life. Considering mine was caught early yet still requires chemo and radiation.

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
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    Your gyn

    I agree! Run, don't walk to a different gyn! Your guy sounds like he hasn't looked at a medical book in the last 20 years. I agree with everyone else, have your Dr refer you to a Gyn/Onc. Your symptoms are troubling and you need an answer now. I so hope it turns out to be something benign, but you need an answer and treatment. I am sure that if your Gyn was feeling similar symptoms, he wouldn't rest until he had an answer! Men are rather protective of their "boy parts" and should be more sensitive ( Especially a Gyn!) to the pain women endure while they "wait and see". Hoping you get a answer and the treatment you need ASAP.  Sandy

  • Jen85
    Jen85 Member Posts: 4
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    Sandy3185 said:

    Your gyn

    I agree! Run, don't walk to a different gyn! Your guy sounds like he hasn't looked at a medical book in the last 20 years. I agree with everyone else, have your Dr refer you to a Gyn/Onc. Your symptoms are troubling and you need an answer now. I so hope it turns out to be something benign, but you need an answer and treatment. I am sure that if your Gyn was feeling similar symptoms, he wouldn't rest until he had an answer! Men are rather protective of their "boy parts" and should be more sensitive ( Especially a Gyn!) to the pain women endure while they "wait and see". Hoping you get a answer and the treatment you need ASAP.  Sandy

    Thank You

    Thank You all so much my GP is concerned enough that she is setting up another appointment with a new Gynocologist. From my understanding from her there are certain things that have to take place to get the insurance to take effect. I will need to finish physical therapy to see if it helps the pain in my back before she can do further testing. Ect. however we are going to do some more blood work. She says my uterus is at a 6mm they like for it to be around a 5 there so it's not off by much, but it does warrant a repeat transvaginal ultra sound within a month or so unless the new gynocologist feels other wise. I am feeling much better about things still in alot of pain but feeling much better mind and spirit wise.

  • Fayard
    Fayard Member Posts: 438 Member
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    Jen85 said:

    Thank You

    Thank You all so much my GP is concerned enough that she is setting up another appointment with a new Gynocologist. From my understanding from her there are certain things that have to take place to get the insurance to take effect. I will need to finish physical therapy to see if it helps the pain in my back before she can do further testing. Ect. however we are going to do some more blood work. She says my uterus is at a 6mm they like for it to be around a 5 there so it's not off by much, but it does warrant a repeat transvaginal ultra sound within a month or so unless the new gynocologist feels other wise. I am feeling much better about things still in alot of pain but feeling much better mind and spirit wise.

    Jen85,I am happy to hear you

    Jen85,

    I am happy to hear you are having a trsansvaginal ultrasound. That is the test that detected my tumor 5 years ago. I do not think that pap smears will show anything in the uterus, fallopian tubes or ovaries. My pap smears were always normal. I had a tumor in the lower side of my uterus that invaded the cervix wall. DO NOT rest until doctors have done biopsies and all necessary tests. I do not mean to scare you, but bleeding the way you are is not normal. It could be benign, but they have be sure. I will also request, if possible, an MRI, which it does not have radiation.

    PS: I was diagnosed at 42.

    Keep us posted!