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Thread: Iím at a loss! I could really use some support right now.

  1. #1
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    Iím at a loss! I could really use some support right now.



    So back in the middle of October I took a trip with my Boyfriend. I ended up wetting the bed, I was also bloated, stomach cramping and gaining weight fast. I saw the Urologist when I got back who blew me off. So I got a second opinion.

    The second urologist did imaging and saw I had a large mass in my bladder. She just went off the Ct Scan, she didnít order any further imaging.

    I had a Cystoscope in November and she saw my bladder looks really good and healthy took a sample to biopsy. The only odd thing was she told me I had a large protrusion inside the bladder.

    But she said to follow up with obgyn. In January I end up in ER with horrible stomach cramping feeling like Iím dying. They order another CT scan which Iím not happy about. This one shows the mass more on the pelvic side then bladder side.

    I see her again, she says I must have tissue from the bladder protruding into the pelvic region and orders a ct guided biopsy.

    I go see my Gynecologist and he says not to do the biopsy. He sends me too Urogynecologist.

    I just saw her today and now Iím even more confused.

    She is sending me to an Oncologist Gynecologist who I got in STAT to see next Thursday. Sheís top in her field and books always off in advance so to get in this quick is rare.

    The Urogynecologist went over all my procedure notes from what the Urologist did and found then through the Ct imaging. She told me I need to have different kinds of imaging. Whatís being seen is this weird annexal structure with moderate amounts of blood flow that is in the right pelvic area. She told me it must have confused the urologist thinking it was in the bladder. Because itís large and the ct scan was unclear.

    She told me itís a right ovarian mass thatís probably been there since the Urologist went looking in the wrong area.

    So basically Iíve had this thing since the Cystoscope back in November and even farther back. Itís just unfortunately the Urologist accidentally over looked it.

    So my head is spinning because this confused me even more.

    She said thatís why the Oncologist Gynecologist will order an ultrasound and MRI to get better imaging on this thing. Unfortunately itís not something she does in her field.

    I feel like an alien, what the heck is this thing on my Right Ovary thatís confusing every doctor?

    Iím bloated, I have back pain, it feels like I have endometriosis back. I asked, itís not Endometriosis. I guess it doesnít fit the look on the ct images for it to be endometriosis.

    Iím still leaking to where Iíve worn depends since October. Iím getting frustrated!

    Iím having a hard time losing weight because Iím so bloated. So Iíve just maintained. Iím on WW.

    Each different doctor has a different theory of what their looking at. They all do however agree on one thing, and it scares me! They think this may be a malignant growth of some sort based on its characteristics. Also the fact Ovarian and Breast Cancer run rapid in my family history.

    Iím 38, I donít smoke, I donít drink nor do I do drugs. Iím healthy in that regard. I had a hysterectomy five years ago due to endometriosis. The doctor took out everything but my right ovary for estrogen purposes. Lucky me! 😂

    I see the oncologist gynecologist and I hope she has a better idea of the next steps forward.

    Sorry I wrote a novel. Itís been hard going through the run around. I needed to vent.

  2. #2
    Forum Supporter ~Seraphim ~'s Avatar
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    Hugs. I am so sorry this is frustrating. I canít imagine.

  3. #3
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    I am so sorry. Has anyone suggested a laparoscope? Why haven't they looked inside?

    Your doctor did the right thing by leaving the ovary in at your age. I too, have Endo. They never wanted to give me a hysterectomy as it was not a cure, there is far more negative doing such an extreme, unnecessary procedure in many cases. . I maintained through diet and hormone treatment. I had the hysterectomy at 50, as my bleeding was out of control and the anemia was in a very dangerous zone. I totally sympathize, as the disease causes so many issues.

    Keep us posted.

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    I don't know what to say. :( You sound very brave. Definitely keep us updated.

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    I'm sorry you're going through this. Stay strong and stay positive. The help you need is on the way. Feel free to vent here all you want.

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    I am very sorry to hear this and I have been in somewhat similar circumstances that ultimately, turned out all right. However, you must be your own advocate. You must push for appointments, you must tell doctors when they are NOT listening (they are usually shocked by the indication and sit up at attention), you must insist on different types of scans and explanations of different types of treatment. And since this is such completely perplexing problem, make sure after you get a diagnosis that you get a second opinion before any kind of invasive procedures. BTW, one of the best ways I have discovered in such situation to find a really good doctor is to ask other doctors who THEY go to. Ask LOTS of questions, insist on answers that you understand, don't just accept what they say. And use the nurses, they are usually the most with it people in hospitals and other facilities -- rely on them and treat them well.

    Stay strong and remember, and I am evidence of it, modern medicine really can perform miracles. It may be unpleasant or take time, but you will improve and you will get a handle on what is going on.

  8. #7
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    Are you in the US?

  9. #8
    Platinum Member Jibralta's Avatar
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    Originally Posted by limichelle
    They think this may be a malignant growth of some sort based on its characteristics. Also the fact Ovarian and Breast Cancer run rapid in my family history.
    Oh god :((((((

    So sorry to hear this.

    I agree with Arjumand. Be diligent and persistent.

    Sending you good vibes and (((((hugs)))))

  10. #9
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    Thank you everyone!

    I live in the United States. I will say Iíve lucked out in getting referred to a top doctor next week. Iíll be sure to ask tons of questions.

    Iím hoping she will be more helpful then the others, Iím sure she will be.

    My regular Gynecologist told me heís afraid to do any surgery on me considering Iíve probably got scarring from previous surgeries. I understand but I also find it odd considering Iíve got this mass inside of me. He is a new gynecologist Iím seeing, the previous one left the practice. I guess itís out of his scope and thatís why Iím seeing this oncologist gynecologist next week.

    Because Iíve had so many previous abdominal surgeries no doctor wants to do a procedure unless they absolutely have too, not even a laparoscopic one.

    Iím hoping honestly this whole thing blows over, they remove the mass and itís benign and I go about my day. Thatís the best case scenario Iím sure everyone hopes for.

    You guys are awesome with the advice and support.

    Thank you!

  11. #10
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    Your Gyno did the right thing by referring you onto someone else.

    Are you on any hormonal therapy for the Endo? I was having a surgery every other year, after I was placed on hormonal therapy, the surgeries stopped. Also, are you on a low fat diet to reduce estrogen production?

    Sending a lot of support, as this can be scary and frustrating. Please let us know the results.

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