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Side effects from radical hysterectomy

sal50
Posts: 1
Joined: Jun 2008

I had cervical cancer and had a radical hysterectomy 17 years ago. My nodes were all negative. The surgery was my only treatment I needed. I have been cancer free now since that
time.

The side effects are nerve damage to my bladder. I now have a rare voiding dysfunction NO URO can figure out. It looks like I will never be able to pee like a normal person.
My bowel motility is poor. Very twisted colon. Was told in 2002 by Gyn surgeon who removed my ovaries it was the WORST pelvic wall adhesions he had ever seen.

Sometimes, living with the side effects is harder than having the cancer. I can not BELEVE the "Plumbing" I have.

Being I was 33, the Gyn-Onc surgeon told me I would have no side effects.

How Wrong he was.

Arachne
Posts: 2
Joined: Oct 2007

I am new here, but as of the 28th of June, I am now a 25 year survivor of having one of those same "hysteria"ectomies. I got my 25 radiation treatments too...did all I was told. Now? Facing possible colon cqncer (blood in stool and another colostomy, something I said I would not do again)...and my urethra is disigrating from those radiation treatments. I was told they now know..or have known for some time, that the radiation continues to...microwave us..till something else goes....
tests begin again on 7/21/08 I guess we will see how tough I am. I missed the last Relay for Life due to being too ill. I hate being sick again..not after 25 years!! Finding out the doctors know this is happening to the survivors, and yet no change to the radiation given???? thats just wrong.It will take more doctors having loved ones getting cancer to change this I think...same thing with "health CARE".

hosslady
Posts: 12
Joined: Jun 2008

OH YEAH, I HAD ONE IN MARCH, 2009, ENDOMETRIAL AND OVARIAN. CANCER FREE. CHEMO, NO RADS.
NOW I HAVE SUCH A SHORT 'BIRTH CANAL' I WONDER IF I WILL EVER BE ABLE TO HAVE NORMAL RELATIONS AGAIN. (I HAVE BEEN SINGLE AND NOT DATING FOR A FEW YEARS.) HOW DO YOU ALL COPE? NOT TO MENTION THE DRYNESS....

ALSO, SAL, THE NERVE DAMAGE TO THE BLADDER, SOMETIMES, FOR SOME ODD REASON, VIAGRA HELPS SOME WOMEN WHO HAVE HAD NERVE DAMAGE FROM HYSTOS, AT LEAST WITH THEIR LOVE LIFE. DON'T KNOW IF THAT COULD BE A TIP FOR YOUR DOCTORS OR NOT. I ALSO GO TO A CHIROPRACTOR, AND HAVE HAD SOME THERAPY THERE THAT HELPS, AND ACCUPUNCTURE MIGHT HELP. DON'T GIVE UP,AFTER ALL, YOU'RE TOUGH OR YOU WOULDN'T BE HERE. : )

THE TWISTED BOWEL, LOOKS LIKE THE DRS. COULD DO A SIMPLE LAPRASCOPIC SURGERY TO LASER THE ADHESIONS. I HAD ONE YEARS AGO THAT HELPED SO MUCH FOR THAT.

PRAYERS,

I NOW LEAK WHEN I COUGH, AND DO THE KEEGEL EXCERCISES.

HOSSLADY N.

green50
Posts: 318
Joined: Feb 2008

I am glad your cancer free. Those words I like to hear. I have been taking chemo off and on since 2002. I am still here after almost 7 years. I too have sometimes the "leak" problem. The nurse who does my chemo is same age as me 51 and she said that is part of age as well because she leaks sometimes when coughing or sneezing as I do. Ah the joys of being a woman. LOL
Prayers and Hugs
Sandy

shanaladee
Posts: 3
Joined: Apr 2004

Hysterectomy and radiation for me... 11 years ago.

I use Replens or KY for the dryness and I use it on a daily to every other day basis. The doctor has me on ERT and estrogen cream that I use sparingly in my vagina once every other week which also helps.

For the 'leaking' problems, keegel exercises helps along with a regiment schedule of going to the restroom. I go about every 3 hours and I try to never let my bladder get full.

Alley76
Posts: 5
Joined: May 2009

I have seen these exercises mentioned now a couple of times. Would anyone mind telling me what they are and how they are performed?
Thanks

grandma2selena's picture
grandma2selena
Posts: 199
Joined: Jun 2009

First of all I had a total hysterectomy 15 years ago from Endometriosis...I found these boards since I just finished treatment for anal cancer and am now NED. I can relate to the side affects of a hysterectomy believe me.

Ok Keegel exercises are very easy, you are going to sit where ever you are comfortable, you will use the pelvic muscles, and truly it is very much like you are pushing to pee, then tightening up the muscles as if to stop peeing. That is all these excercises are, but believe me they do help in many areas, urinary problems, also sexual problems.

Debbie

lookingforanswers
Posts: 1
Joined: Jun 2009

I had stage III endometrial carcinoma, a uterine cancer, and had to have a radical hysterectomy, a couple of months of daily radiation treatments and 3 weeks of Brachytherapy...that has resulted in long term effects such as fatique, and defecits in cognitive functioning, and also very short vagina, and had difficulty having relations with my husband because of severe pain and some spotting bleeding when anything is inserted into my vagina. I asked my doctor about it and he said it is a combination of the effects of radiation treatments and lack of estrogen, and it has been two years ago since my treatments and I still feel very tired all the time...and I am wondering if I will ever have a sex life again. I would appreciate this issue being addressed. Is there anything that can be done to at least not have pain when trying to have sex? ....any remedy? ...for the pain and dryness.

Looking4Answers2
Posts: 1
Joined: Dec 2010

Hi, new to this site. How did you and who broached the subject of treating the adhesions? I have gone to the GE several times with complaints, but no resolution. She did not even suggest the surgery you mentioned. Could you provide some information about your experience of bringing it to your doctor's attention? Thank you. Kate

kbee
Posts: 1
Joined: Jan 2011

Hi Kate, I had to respond to your post. I had a radical hysterectomy 3 years ago for Cervical cancer. I was told many times after my recovery period I should be able to get back to life which consisted of exercise, playing-biking with my daughters and regular house work. Not the case. Anything I did resulted in horrible abdominal pain and gas for an entire week. I cried daily at work just from sitting at my desk. My gynecoogist had no answers...continually telling me she could see nothing wrong. Fortunately I had one friend that also had adhesion issues and when she heard my symtoms she shared her story. After hearing that she is fully recovered after Laparascopic surgery I was determined not to give up until I had some relief. I couldn't imagine living with the cards I was dealt as I was very energetic and physically fit. She gave me the name of her doctor but unfortunately he had just retired, so I continued my search. After weeks of research on the cancer sites my sister found an oncologist/gynecologist that is very well known and respected in our area. I made an appointment and he sent me on my journey of a million tests to rule out everything known to man. Once they tests were all complete (these tests are required by insurance before they will allow surgery for adhesions) I was quickly scheduled for surgery. Laparascopic surgery was much better and quicker recovery than being opened up, but brace yourself as the recovery is painful. To do the surgery they must fill up your insides with gas as to see what they are doing and as it moves its way back out it is quite painful. Feels like you're having a full blown heart attack. All in all it was worth the quicker recovery time and I was back to work the next week. My suggestion is to find an oncologist as they are more familiar with these issues. Be sure to write all of your issues down and hand them to the nurse. Results are much better when the doctor has something to review rather than hear. I will add, the surgery was a wonderful improvement but I am not and never will be the same as I was pre hysterectomy. Biking will probably never be a big focual point anymore, but it turns out swimming seems to be a good alternative. I wish you the best and hope you can find someone that has experience in your area. Talk to everyone you know as you may find someone in your circle of friends and family may be the best source for the best physian. Don't take no for an answer. If the physician you are seeing does not know then walk away and find someone that does and don't ask them for a referral. Don't let it discourage you, let it be your mission.
Kathy

Alley76
Posts: 5
Joined: May 2009

I turned 30 in April 2006, by August 2006 I was diagnosed with Cervical Cancer. I went into hospital with the expectation I would emerge minus my internal "female" organs and little else would change. I retained my ovaries.
I had an almost fatal reaction to the anaesthetic during the procedure and found out I was allergic to morphine after the operation!
I was unaware I would have a severely distended stomach (I looked like i was 9 months pregnant filled with fluid, I looked like I had a water bed in my stomach, a few weeks after leaving the hospital I got a hole in my cut and all the fluid poured out like a little boy peeing fountain!!) The first few check ups I was told my stomach would return to normal, now I am told I will require a tummy tuck and liposuction of the area (roll on saving up for all that!) to return it to it's previously flat self.
I am completely horrified by my appearance although I am well aware it could be much much worse. I was also not made aware I would have bladder control problems, weight problems, hormone problems (horrible facial hair growth).

I still have numbness in the top of my left leg and my pubic bone area is permanently swollen which looks a bit bizarre in clothes. I had the lymph nodes removed in my left hand groin also. It took me over 3 months to be able to return to work and my stomach was still swollen, I was still unable to lift heavy objects or sit up from a horizontal position.

If I knew then what I knew now, I would probably have tried a Trachelectomy first.
I was totally unprepared for the feeling of being "spayed". I am extremely lucky to have a strong and supportive family & friend base, and will be forever grateful to them all.

I think all in all I would have prefered to watch paint dry, but it could have been worse!

CandiceMrtnz
Posts: 1
Joined: Aug 2009

I just had a fully hysterectomy due to having Uterine Cancer Stage 1. Now I am cancer free, no chemo, no radiation! How good is that... however... I am still not healing correctly. I have an infection, and my husband seems to think they messed up. So i need to know if i am alone or if it is common for the vagina to change. not just a little, but alot in size, shape, location, and depth. We have not yet had intercourse seeing as how it has only been two weeks since my surgery. But i am scared. What if they did mess up and do something wrong. seems like everyone who has seen my incision says they were sloppy, and made the cut way to big.

i am only 25, and a diabetic. Has anyone had any of these concerns?

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Sorry, this is coming from a male perspective, but since my wife (early menopause at 43) went through a similar issue (without the cancer) just a couple of years ago.

She continued to have bleeding, which is kind of tough to explain having removed the organ responsible for bleeding. The infection, get looked at right away. You don't have to see the exact surgeon, and if you are made to get an appointment, go to the emergency room. Better to have the incision dealt with before it gets worse.

As for a "change" physically, with all due respect, I didn't notice any difference. I'll admit, I was more afraid and concerned than she was. I just had to wait for the "all clear" from the doctor, and even then, there were nerves.

Congrats on being able to beat your cancer without any further treatment. But by all means, get the infection and incision checked out.

georgia mom
Posts: 1
Joined: Sep 2009

Earlier this summer I had a radical hysterectomy for endometrial cancer. I recovered well from the surgery and brachytherapy... but have not returned to normal for sexual function. It feels like my vaginal canal is too short, and when my husband and I attempt intercourse, it feels like there is a painful "wall" at the end of the vagina... Sex is not pleasurable for me any more..... Has anyone experienced this and perhaps more importantly have been able to figure out how to make sex more emjoyable....

tiny one
Posts: 467
Joined: Jan 2009

I had a resection for colon cancer, I was stage 3, cancer free now. Sex was painful while I was receiving chemo and radiation. I was told that I have vaginal shortening from the radiation. All the Doctors can recomend where I live is to use a dialator on a regular basis. Due to alot of pain and bathroom issues I haven't been able to do this everyday. I'm sure in the bigger cities there are Doctors who have the means to help with this problem.

wojomama58
Posts: 2
Joined: Dec 2009

I am myself just starting to seek these answers. I hate the fact my vagina is so short, along with the fact I have NO sex drive. I was divorced for 3+ years, so it didn't bother me to not have sex. But now that I am in a relationship again, I would like to get something out of it. I am now on a mission to seek out a solution, surly there is one!!

wojomama58
Posts: 2
Joined: Dec 2009

Hi all! I am new to this group and actually this is the first time I have discussed this with any one, except for my husband. I had my radical hysterectomy in 9/03, along with radiation and chemo for cervical cancer. So far I have had some issues with my bladder control and of course intercourse. I have attributed the slight incontinence to my recent weight gain. Could be wrong there. But my main concern is of the shortness of my vagina and the bleeding I have been having after intercourse or the "stretching" of my vagina with my plastic vagina stretcher the doc gave me right after the surgery. As time has gone by the bleeding has gotten worse, sex ranges from uncomfortable to slightly painful. And here's the main concern I have,(this is a bit grafic and gross and I do appologize) after sex tonight, there was a chunk of tissue on the end of my husbands penis. We initially thought it was a blood clot, but after wiping it off and looking at it, it was a dome shape,larger than an eraser head, and like white or flesh colored on the dome side, slightly bloody on the flat side. I felt no pain. The bleeding lasted only a minute or two as it usually does. I am wondering if maybe it was some kind of scar tissue that finally has broken loose? Has any one else experienced this? I haven't been to a dr. in 5 years as my ono dr. moved and I have never made it to one since. bad I know. I have an apptment Jan with a female Gyn. Anyways, any feedback on this?

cancerfree2011
Posts: 1
Joined: Oct 2011

If you had a modified radical hysterectomy or radical hysterectomy, it is common for them to remove 1/4 or more of the top of the vagina, as well as lymph nodes. I had a modified radical hyst. 3 weeks ago. They removed my uterus, cervix, lymph nodes, and a portion of my vagina because I had cervical cancer. The good news is there was no spread and I have no more treatment. I also got to keep my ovaries.

I am having problems with swelling that I've been able to control with a compression belt (some call them maternity belts), moderate exercise, eating healthy, and taking a multi-vitamin and B complex vitamin daily. Sometimes eating fruits like watermelon, oranges, pineapple, or grapes helps too. Also, when you are swelling, lay down and prop your feet up.

I also had an infection that was treated with a combination of two antibiotics for 10 days. It wasn't fun, but it did work.

I wish all of you the best!

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