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Thread: Help, please.. any advice

  1. #1
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    Help, please.. any advice

    Iíve been HPV+ strain 16&18 since before 2015. I had an abnormal pap in August after having a baby. I had a colposcopy and then the results came back as low grade changes. My Doc scheduled another colposcopy and those results came back with high grade changes and severe CIN3. 2 months later, I just had a LEEP and D&C on Friday the 20th. The pathology department sent my slides for further testing.. what could this mean??

    Back story:
    I have been bleeding non stop since having a baby in May. I bleed very heavily with clots. I take aygestin (hormone) to control the bleeding but I still spot even while on it. I bleed after sex and sex is always painful. I have a constant dull ache in my pelvic area and my lower back always hurts. Iíve had a UTI that went to my kidney (1st time ever in my life) about a month ago. Iíve lost 5lbs in a week and I have no appetite, ever. I also have a blood clot on my right ovary, my endometrium was poorly defined and 9mm, even while bleeding non stop.

    Please, any advice or other people who have had similar symptoms.

  2. #2
    Moderator Top User jorola's Avatar
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    hello Rwalker

    Often labs send out samples to confirm their results or for second opinions. Does not necessary mean bad news rather it means confirmation of whatever they found - good or bad - is needed.

    Have you ever been advised of having cysts, fibroids, endometriosis or adenomyosis? These can also be causes of your symptoms. I had adenomyosis, fibroids and cysts. I was bleeding very heavy and almost not stop and my gyno advised it was due especially from the adenomyosis. A hysterectomy fixed that. However the best thing here is to see what comes of the tests and go from there.

    Worrying is only going to wind you up more so try to keep busy until you get your results. I know it is hard. Hang in there and let us know how things turn out.

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  3. #3
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    Jodie, I have none of those.. which I thought maybe it could be caused from that too but everything checks out fine in those departments.

    Iíve been so anxious, panic attacks and just on edge. Iím just always in a funk because my doctors answer is always, ďitís normalĒ.. bleeding for 5-6 months is NOT normal. Iím just frustrated. My aunt worked in pathology and said that most times they send for further testing, it means they found something theyíre wanting to confirm further. Ugh.

  4. #4
    Moderator Top User jorola's Avatar
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    Sorry, I was mentioning those other diagnoses in hopes that it could be one of them causing your symptoms. Yes, your aunt is of course right and as I was saying the lab could be looking for confirmation of what they found. However what they may have found is still unknown. And the unknown is why you are so tangled up in knots. I am sorry this is so hard on you hun. Maybe you could get something for your dr to help with the anxiety, especially if you are having panic attacks. That is not good either. I am afraid I nor anyone else could truly know either what is going on and you will have to wait for the results. Do you know when you expect to hear them? Again I am worried about how you are doing right now. Do you have good support at home?
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  5. #5
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    Quote Originally Posted by jorola View Post
    Sorry, I was mentioning those other diagnoses in hopes that it could be one of them causing your symptoms. Yes, your aunt is of course right and as I was saying the lab could be looking for confirmation of what they found. However what they may have found is still unknown. And the unknown is why you are so tangled up in knots. I am sorry this is so hard on you hun. Maybe you could get something for your dr to help with the anxiety, especially if you are having panic attacks. That is not good either. I am afraid I nor anyone else could truly know either what is going on and you will have to wait for the results. Do you know when you expect to hear them? Again I am worried about how you are doing right now. Do you have good support at home?
    The biopsy came back. It said:

    CIN 3/CIS in both the exctocervical and endocervical regions with glandular involvement. The CIN 3/CIS was present through the entire tissue that was taken and to the margins on all tissues. All my doc says is, ďit SHOULD have taken care of itĒ.. nothing is ever for sure with her and she wants me to follow up in 4-6 months and Iím not sure I feel confident in that. After my first biopsy, she told me that everything should come back normal and it didnít and that is why I went on to have a LEEP. What would any of you ladies do? I have my tubes tied and I have since I was 23, so having kids isnít a thing for me. I just was hoping to do surrogacy again which Iím not sure I can do as of now anyways.

  6. #6
    Moderator Top User jorola's Avatar
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    May 2014
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    I think if you are uncomfortable with her answer maybe you should seek a second opinion. It can't hurt.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  7. #7
    A second opinion might be a good idea. After 6 months of testing, my dr. Finally decided I needed a hysterectomy since I bled heavily every 2 weeks. It turned out I had a large fibroid tumor that hid from every test that looked for it. The dr. Was really surprised, I was relieved and thankful to God. Sometimes it just takes finding the right dr.
    His fight is over. How brave he was. 47 years of love.

  8. #8
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    Quote Originally Posted by Marian333 View Post
    A second opinion might be a good idea. After 6 months of testing, my dr. Finally decided I needed a hysterectomy since I bled heavily every 2 weeks. It turned out I had a large fibroid tumor that hid from every test that looked for it. The dr. Was really surprised, I was relieved and thankful to God. Sometimes it just takes finding the right dr.
    I agree! I have a referral to the gyn onc. Hopefully Iíll get in next week and see what she says. I asked my doctor what she would tell her daughter if she was in my position, she said, ďwith the uncontrolled non stop bleeding, the fact your tubes are tied, the HPV and recent findings, I would have her consider hysterectomyĒ.

    Iíve been a surrogate twice. The last time, the baby passed away at 4 weeks old due to a freak accident. The parents asked me to carry for them again and then all this started happening. I think thatís why Iím most devastated. But I need my life back. This has been consuming me every moment of every day.

  9. #9
    Moderator Top User jorola's Avatar
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    May 2014
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    As generous as your gift to others is, carry a child for them, your health has to come first. See what the onc gyn says and then you can make an informed decision.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  10. #10
    Senior User
    Join Date
    Aug 2015
    Posts
    172
    Definitely see the gyn. oncologist just to be safe. They are trained to see things that regular gynecologists miss. Kudos to you for being proactive. Trust your gut. Good luck and let us know how it goes next week.

 

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