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I’m at a loss! I could really use some support right now.


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:icon_sad:

 

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 didn’t 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 I’m dying. They order another CT scan which I’m 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 I’m even more confused.

 

She is sending me to an Oncologist Gynecologist who I got in STAT to see next Thursday. She’s 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. What’s 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 it’s large and the ct scan was unclear.

 

She told me it’s a right ovarian mass that’s probably been there since the Urologist went looking in the wrong area.

 

So basically I’ve had this thing since the Cystoscope back in November and even farther back. It’s just unfortunately the Urologist accidentally over looked it.

 

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

 

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

 

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

 

I’m bloated, I have back pain, it feels like I have endometriosis back. I asked, it’s not Endometriosis. I guess it doesn’t fit the look on the ct images for it to be endometriosis.

 

I’m still leaking to where I’ve worn depends since October. I’m getting frustrated!

 

I’m having a hard time losing weight because I’m so bloated. So I’ve just maintained. I’m 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.

 

I’m 38, I don’t smoke, I don’t drink nor do I do drugs. I’m 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. It’s been hard going through the run around. I needed to vent.

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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 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.

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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)))))

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Thank you everyone!

 

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

 

I’m hoping she will be more helpful then the others, I’m sure she will be.

 

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

 

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

 

I’m hoping honestly this whole thing blows over, they remove the mass and it’s benign and I go about my day. That’s the best case scenario I’m sure everyone hopes for.

 

You guys are awesome with the advice and support.

 

Thank you!

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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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L, I can't believe you are still going through this! I take that back, unfortunately I can. Medical care can be so frustrating and infuriating. At your expense no less.

 

I wish I had good advise for you. . other than you really need to make a huge fuss about this and raise your voice until you get someones attention. You need to be pretty assertive and a down right b*tch to get the care you deserve. It shouldn't have to be this way, but it just it sometimes.

 

It's time to get mad. Your health depends on it.

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Thank you everyone for your responses.

 

I had a stat appointment with the Endocrinologist today. They called a week ago the office saying he wanted to see me over the imaging. In the imaging I have a spot on my right adrenal gland.

 

I went in and left feeling overwhelmed. He said the small spot on my adrenal gland could be in correlation to the right ovary mass. So whatever is going on if there’s a ovary malignancy there’s a good chance it’s spread to the adrenal gland.

 

I have to have an MRI of the abdomen and detailed blood work and a 24 hour urine test.

 

I think I just need to take some time and regroup. I don’t want to leave ENotalone it’s just I’m feeling run down emotionally and I’m scared. Once I have a conclusion to all of this I will let you all know what it is, good or bad.

 

I just need to take time doing these tests and seeing the Oncologist Gynecologist this Thursday.

 

I’m in good hands medically. The Endocrinologist and Oncologist Gynecologist are going to be in touch with each other through out this whole process. He said it’s important they work together.

 

I have faith that I’m in good hands.

 

I have much love and support at home and my boyfriend is very supportive.

 

I just need to take a short break.

 

Thank you all to who have been showing me support on this long journey.

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Thank you everyone for your continuing support. I have a somewhat update.

 

I saw the Obgyn Oncologist and she was thorough and straightforward. She has ordered an MRI of the pelvis which I’m doing Monday then Wednesday an MRI of the adrenal gland. I did the CA125 blood test yesterday. I’m doing more bloodwork for the endocrinologist regarding the Adrenal gland tumor.

 

The Obgyn Oncologist doesn’t think the ovary and adrenal gland are related. She says their two separate occurrences.

 

She also did the braca genetic testing since I have high family history of ovary and breast cancer in my family.

 

It was sad 😞

 

The main room where people do their chemotherapy in the back. It’s this large room next to the hall where the examining rooms are. This elderly man was screaming out in pain. This office I go to treats all types of cancer. The nurses were trying to console him. He was crying out for help at one point.

 

It’s depressing going into an oncology office My heart goes out to each patient.

 

I pray that I won’t have to be in that situation.

 

I know strength runs in my family though. Both of my late grandmas on each parents side fought advanced stage ovarian and breast cancer and survived! They died much later on late eighties of other ailments.

 

I just tell myself if the worst case comes I got this!

 

My late Grandmother she treated breast cancer as if she had the flu. She didn’t cry or lay down and surrender to the cancer. She instead fought it with perseverance treating like it didn’t matter. Her life was hers and not the cancers to take. That’s one of the things I admired about her.

 

I feel yes these cancers are in my genes but so is strength! I come from an amazing line of strong woman.

 

That’s why I don’t fear this if it is Cancer. It just means I fight it.

 

If it’s not cancer many more reasons to be grateful for my health.

 

I will update again.

 

Thank you all!

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My CA125 is normal! So that’s a relief. I did the pelvic MRI and it came back showing the mass is actually on the right side not in the bladder but just outside next to the bladder. So back to square one I feel like with the Urologist. Well her associate anyway since she left the practice.

 

I had my adrenal MRI today and am waiting for those results and going to do extensive blood work for the adrenal gland.

 

So really I’m still stuck in limbo.

 

Very frustrating!

 

I pray soon everything ties together and I get the answers I need to many questions I’m going to keep asking!

 

I’ll update when I know more.

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Hi Seraphim!

 

I guess the CA125 checks for ovary cancer. It came back negative. They also checked the MRI and it showed the same mass was never in the pelvic region. So my original Urologist was correct. The MRI gave more specific whereabouts the bladder mass is outside of the bladder. I wish MRI was the first test done. But the MRI is last resort which is odd.

 

So no cancer of the ovary which I’m happy about.

 

It’s still in limbo because the same thing they’ve been seeing since November is in a weird location and the MRI would have saved the headache. I suggested MRI in the beginning but the doctors told me not to jump the gun. It’s frustrating!

 

As for Cancer that’s still unclear. Because no biopsy has been done of this lesion and the MRI I did of the adrenal gland was because of a tumor on the adrenal gland.

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