Female Pains AFTER radiation, No Doc will Listen...

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Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Thu Nov 29, 2018 3:59 am

Hi lakeswim
I have stenosis after radiation
Both vaginally ( because I just had s smear) :cry: :cry: :cry:
And urethral,,, but they seem to have fixed my uthera by bringing in a urologists before my surgery and actually using a large catheter instead of a small one ..
As for peeing,, I continue to have UTI type symptoms after radiation for a few weeks ( nothing showing in sample) but eventually went back to normal

Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

User avatar
dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby dianetavegia » Sun Dec 02, 2018 4:17 pm

I'm not going to read 5 pages of replies so someone might have mentioned this. A church friend who is much younger than me has IC. I think it's interstitial cystitis. She has to cath herself three times a day and spray the inside of her bladder with a pain killer. A surgeon has offered to cut the nerve to her bladder because she has no life. She's never had cancer and this is something more women live with than I'd ever guessed. A urologist can help you.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Mon Dec 10, 2018 10:13 pm

Yes, I remember my bladder, everything down there being irritated. I was careful what I drank, nothing to acidic. It passed but frankly I think the radiation was about the worse thing I experienced. I hope this passes for you soon.

Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Tue Dec 11, 2018 2:38 am

I Bought potassium citrate tablets ( I herb)..... and plenty of fruit and it helped the stinging when I went for a pre

ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Pyro » Thu Jan 17, 2019 1:11 pm

etaylor22 wrote:Just an update - refused additional chemo. I'm good. I'm not in for any more damage. I actually felt fine before going in - aside from the complete blockage. My everything was normal - aside from the tumor. My cea is now .78 and I'm done. No more, and I'm taking my chances. I'm not saying thats right for everyone. I'm glad that many of you go with the plan, and fare well. That wouldn't be me. I still have residual pain in my feet/toes, my brain is completely flawed, my hip / pelvic / SI joint is screwed, and yet I "tolerated it well". BS. This f'd my life over and now I am in the body of a 70 year old. I am now my mother, but worse. F this. This sucks, and this "treatment" shouldn't be called that. Its a death sentence. Quit sugar coating it. I sent my kids off for the first day of school today. I walked them. In the rain. No umbrella. I'm good with that. Want to take it away - I'm out. I'm good for now. I'm done with treatments. I'll watch the follow ups, but otherwise, I'm done.


I’ve been doing this dance for over 3 years and I’m about here. Did they sign you up for hospice?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

LindaG
Posts: 3
Joined: Sat Oct 06, 2018 12:42 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby LindaG » Mon Jan 21, 2019 4:35 pm

I had a partial cysectomy for bladder cancer and had the same UTI feeling. It turned out to be a kidney stone.
Dx: Colon Cancer (pT4bN0) so Stage 2C 7/2018
Dx: Bladder Cancer 8/24/18
8/24/18 Surgery for both
8/24/18 Temporary Ileostomy
8/24/18 Bladder catheter (Foley)
9/20/18 Catheter removed
10/2/18 CEA 2.1
11/15/18 Xeloda 3000mg, 2 wks on, 1 wk off

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Pyro » Tue Jan 22, 2019 8:30 pm

Deleted
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby lakeswim » Tue Feb 05, 2019 8:24 am

etaylor22 wrote:This is more of a rant than a question...I'm coloretal cancer stage IIIb. Initial emergency colostomy, then went through 5 weeks of pelvic radiation with xeloda. The very last week of Radiation I thought I had a yeast infection, so I got the antibiotic. Then it started to feel like a UTI. I asked for antibiotics, but they insisted on a urinalysis. The sample after 48 hours showed no growth so the Doc comes back with "No Infection shown. I hope you are feeling better".

I am level 4/5 pain. Miserable level 8. Pain Controllable with Oscillocossinum and Motrin 600. I feel like someone is pulling on my bladder strings. Maybe my bladder is falling out of my vagina, or maybe my vagina is falling out. The pain is above my pubic bone and where the pee comes out. Maybe its in my vagina too. I am so sick of talking about my girl parts and my rear passage!! So, Its painful to pee, not burning, but pain in this place like its in the middle of nowhere. I seriously cannot point to a body part on the diagram, the place is nowhere. There is pain pressure when I stand up. I feel like I'm peeing on myself. Walking causes this pain. Sitting up causes this pain. Lying flat causes this pain. I feel like I need to tighten the pelvic muscles to be able to stop pee when I feel like I am going to pee on myself. My best position is in a nest of pillows slightly tilted to the side with a pillow under half my butt. This started the last three days of radiation, and has gotten worse with a fever up to 100 for two evenings, and it has since gotten slightly better but not completely tolerable.

I'm on my own here. The first day of radiation, I asked the Radiation Oncologist about vaginal stenosis. He said it rarely happens. Pffft. So now this pain and his reception...I asked about this pain three days to the end of Radiation, and he blew it off. I was nearly in the floor in pain, crying like a blubbering fool. Then went to the Hematology Onc who came back with the hope you are feeling better statement.

I'm ready to go to the Chinese medicine doc for help. I am on an Island.


I do hope things have improved for you. I am 10-12 weeks from end of radiation and I woke up today to pain while urinating and after urinating. It feels like my urethra but I don’t know. I’ve never had a UTI before. I also had mucous on the paper - and feel like I have slight menstrual cramps (or at least I’m that area) but I’m sure it’s not, given all the chemo and radiation I’ve had.

I started with hip and lower back and thigh aching in recent weeks.

My Rad Onc office says “all side effects from radiation ended 2 weeks after radiation stopped so whatever you are experiencing is not from radiation.” They insist on this. They’re crazy.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Tue Feb 05, 2019 2:51 pm

One year old from radiation. I found pain in hips. pelvis, heck...everything down there.y experience after finishing was it got worse before getting better. My research confirmed this as well. I found soaks in bath to be best pain relief. I also switched to skirts, a void tight clothing, even got some loose boxers. Sex was very uncomfortable but is better now, still occasional pain.
I started taking turmeric and black pepper capsules, get at Costco. They were recommended by chemo nurse, conferred with internist who also recommended. Much less joint pain, increased freedom of movement.
Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20


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