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

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etaylor22
Posts: 5
Joined: Wed Nov 29, 2017 9:05 pm

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

Postby etaylor22 » Tue Jan 16, 2018 5:41 pm

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.
40yo
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage Stage 2, Path-negative margins, 19 Lymph nodes negative
4/10/18 XR Barium Enema - ileo reversal leak test
In Denial...Happiness Lost

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susie0915
Posts: 758
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Tue Jan 16, 2018 7:31 pm

My radiation oncologist have me 2% lidocaine gel. I would dab some up on vagina before urinating to numb the area. Otherwise it was like passing glass. It started a couple weeks before ending radiation and a couple after finishing. I think it's just the area so burned from radiation
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

MissMolly
Posts: 487
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Tue Jan 16, 2018 7:35 pm

Radiation can cause severe inflammation of the lining of the bladder and urethra. This would account for your intense pain. Picture a severe sunburn of the epitheal lining of your bladder and urethra. Ouch.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

teachpdx
Posts: 606
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

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

Postby teachpdx » Tue Jan 16, 2018 9:06 pm

Sorry for your discomfort. I had lots of pain after my surgery, but not before. You have my sympathy re lack of sympathy/understanding on what radiation does to delicate pelvic tissue. My advise is to not give up with looking for answers. I know easier said than done, especially when in so much pain.

Peace, Kristi

Feel free to PM me.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Caat55
Posts: 338
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue Jan 16, 2018 10:57 pm

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.

I totally relate to your pain and exhaustion about talking about everything down south. I was going between Tylenol and ibuprofen for the last week of radiation and really the 3 weeks after. I found the only place I could sleep was in the bathtub, just added water as it cooled down. My friend gave me a cannibus cream with arnica, menthol which helped. I start wearing my husbands boxers shorts. Also found a cream called calmoseptine, zinc and menthol, which I rubbed on myweeping skin. I got a cushion used in wheelchair which allowed my to drive, sit for meal. I am sharing this not for sympathy but in the event something will stick for you. There is just so much they don't tell you or you can't prepare for.
There is some great pelvic floor exercises at core exercise solutions.com.
I finished radiation December 8th, can now wear boxers right side out guess seams don't bother me any more but lasted ten minutes in pants. Thank goodness for long skirts and Ugg boots.

You are in my thoughts!!
Susan
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

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susie0915
Posts: 758
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Jan 17, 2018 8:49 am

I also did soak in a tub a couple times a day, and the nurse suggested laying under or in front of fan to cool area. Being I went through radiation during the summer that was okay. My radiation oncologist also offered oxycodone but I told him I would just take Advil. The lidocaine really did help in numbing area before urinating.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Caat55
Posts: 338
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Jan 17, 2018 11:01 am

Don't use Calmoseptine if you are still getting radiation. It's impossible to get off. Good luck and take care
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

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

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

Postby BethD » Wed Jan 17, 2018 1:29 pm

Hi Caat,
I'm sorry you are in so much pain. I hope you can find relief.

My radiation nurses suggested over the counter pyridium to help with burning pain during urination.

They also suggested aquaphor and Vitamin A & E cream to put on around the clock, except not within two hours before radiation. The radiation will magnify the oils and any metals and make the burn 1000x worse.

I found it helpful to take a lot of baths, and apply little frozen globs of coconut oil or other creams. The numbing cold was a relief.

I would wear skirts and try to air out as much as possible. & I used a peri bottle to rinse and would aim a stream of water at the urethral opening when I would pee. That helped a little bit.

talk to you soon
Beth
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

teachpdx
Posts: 606
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

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

Postby teachpdx » Wed Jan 17, 2018 6:51 pm

I was not given any advice on putting anything on afterwards. Plenty of notes in waiting room for breast cancer radiation patients. The problem with salves is they say you should be salve free when receiving radiation. Try getting that stuff off - especially on delicate tissues. A bit of a catch-22. I've used vit E oil and jojoba oil. Easier to spread and it dissipates easier as well.

I also had burning when peeing after the radiation. Went to urologist and they gave me meds which turned out made matters worse. I think it's just a time thing.

Thinking of you,

Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

afaust
Posts: 6
Joined: Fri Jan 19, 2018 3:07 pm
Facebook Username: alexandragood2000

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

Postby afaust » Fri Jan 19, 2018 3:40 pm

Hi there -
So sorry you are going through this pain! I, too, am going through the exact same thing right now and feel that my docs didn't do too good of a job of forewarning me about this side effect of the radiation. I just went in to see my radiation oncologist yesterday to address this very issue - here's what I've been told (hope it's not repetitive). The pain that I am having is due to the tissue breaking down along the vaginal walls (the term mucous was thrown out there) - the tissue is inflamed with some lesions. The solve (or temp fix) - sitz baths 2x's a day, using silver sulfadiazine cream (not OTC and not recommended if you are still undergoing radiation treatments) and the pain meds that they had prescribed. My husband just got through radiation treatment a month ago (yes, we got a double dose of cancer in our household!) and his docs advised him that the worst part of the treatment is the 2 weeks following when you finish radiation. That seemed to definitely be the case with him and I would say with me as well. So, in other words, after those two weeks are up these symptoms should dissipate.
Hope that helps!!
45 yr old female, married & mother of 2 boys - 4yrs & 10yrs old
diagnosed w/ rectal cancer Nov 2017
T3 N0
completed CRT Jan 2018 (28 rad treatments/ 5FU chemo 6 weeks)
figuring out my next move - surgery or neoadjuvant chemotherapy :roll:

AppleTree
Posts: 167
Joined: Fri Mar 18, 2016 8:16 am

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

Postby AppleTree » Mon Jan 22, 2018 5:29 am

The worst part of radiation for me was the end. I was happy it was over, but like afaust, the pain continued for a few weeks afterward.

My Dr gave me a mixture of creams that included lidocaine. Also, an anti spasm medication, the equivalent of peridium in the US, but without the dye. Recently I had a bladder infection and threw up within 20 minutes of taking that medicine with the dye. It does not agree with me! But it might not bother you and is over the counter. And, the Peri bottle of water to use while peeing.

I understand your pain. I am sorry your doctors are not more helpful. To this day, I often have to go pee immediately when I see the toilet, or sometimes because of running water. I often wear the lightweight Poise pads for this issue. Some days I have the problem, others not. I find it helpful just to use the bathroom before I feel the need to pee. That seems most helpful.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

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chrissyrice
Posts: 1160
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

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

Postby chrissyrice » Mon Jan 22, 2018 11:38 am

Have you seen a urologist? It is possible that your bladder and or pelvis has been damaged by the radiation. Seek a specialist in these type of complications. Ask your radiologist for a referral too.
Dx 10-31-09 Surgery 12-1-09 Sigmoid Colon Stage IIIb; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin;12-16-2010 PET/CT Scan Cancer Free;7-05-2012 CT Scan NED 2 years;10-13-2013 NED 3 yrs; 08-01-2014 NED 4 yrs; 06-30-2015 Stage 4 iliac lymph node(s) 08-11-2015 Surgery 3 cm tumor and iliac artery graft done. Positive margins in the abdominal aorta, No chemo. 03-16-2016 CT Scan Stable,06-16-2016 CT Scan Stable,09-21-2016 CT Scan Stable,12-2016 Stable,03-31-17 Stable,
Recurrence 6-30-17

teachpdx
Posts: 606
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

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

Postby teachpdx » Mon Jan 22, 2018 4:49 pm

I also have an urgent bladder these days. I wear a pad when I'm working (as substitute teacher) because I usually pee a bit AFTER I've already peed, especially when sitting down afterwards. Try to make sure I get it all but sometimes I forget and sometimes... I also can get an urgent need to pee and need to get to a bathroom quickly. I'm sure my bladder/urethra have been damaged due to radiation. Went to urologist after surgery and whatever meds they gave me made things worse (felt like peeing glass) and went away after I went off meds.

Another one of the many costs of living.

Peace,

Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Caat55
Posts: 338
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue Feb 13, 2018 10:46 am

So almost two weeks after Lap AR. Had a catheter briefly in hospital. I find that I pee once, sit a bit maybe 30 seconds, and pee more. Skin down through and around rectum is sore. Is this anyone else's experience?
S
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

NHMike
Posts: 1216
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Feb 13, 2018 11:09 am

Caat55 wrote:So almost two weeks after Lap AR. Had a catheter briefly in hospital. I find that I pee once, sit a bit maybe 30 seconds, and pee more. Skin down through and around rectum is sore. Is this anyone else's experience?
S


I had a moderate amount of pain after LAR and I determined that the vast majority was from the Ureter Stents and bladder pressure. The painkillers didn't really help - what helped with the latter was when they emptied the catheter bag but the stents were still a problem. Things got better after they removed them.

Stuff can happen in surgery. I don't think that I can have kids anymore unless some plumbing is reattached and I'm guessing that's not possible. Yes, the surgeon did cover reproductive risks with me before the surgery.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx


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