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To painful to use dialator still after 6 months since finishing radiation.

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

I feel so upset about what I have to deal with every other day to get the dialalater in. Still feel raw inside and my whole pelvic area aches badly. I didn't feel this bad during chemo or after my hysterectomy. When I tell my doctor, he just says it may just take more time to heal.

My stomach has been bothering me for the past few weeks and I don't know if it's stress. My second month check-up  is this Tuesday. I am so afraid of the internal exam.

it hurt bad the last time so I pretty sure it will be the same this time. Especially since it hurts just sliding in the small size dilator.

I just don't feel well and I feel like my clock is ticking away wasting my life with not feeling well.

what type of ointment to you ladies use for the dilator? Is there a certain position that makes it easier? I use it sitting on the toilet. That feels so uncomfortable. I tried laying on the bed and that was just as bad. My legs are week from the M.S. so standing would not be easy.

Would if this raw pain and bad ache in my pelvic area and bone never goes away? I still have numbness and nerve pain inside of my thighs. That has been my hysterectomy which was a year ago this month. I don't know if any of the treatments I had done was worth this kind of living. The chemo and radiation was suppose to help the cancer from coming back. By a certain percentage. I don't believe any of them anymore!

I feel I should have just had the hysterectomy and be glad they got it all out and left it at that. 

Sorry for the vent..I'm really hurting., and I feel nauseated

Cucu me
Posts: 214
Joined: Apr 2015

feel better Annabelle,

you are hero. Without such a pain I feel the same sometimes, so you are truly hero.

I hope your doctors find good solution very soon.

Courage!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I hope you get some relief soon. How very miserable.  You are one strong lady.  I know this is probably poor advise, but I quit using mind and have not had any problem.  It didn't hurt, but I just hated it.

I did have pain in my pelvis after radiation and it did go away after a while.  I hope things get better for you.  Hugs and prayerrs, Lou Ann

Prissy777
Posts: 41
Joined: Dec 2014

I understand how you feel.  It is so darned frustrating to go through all of this and run into problems.  No one really explained everything to you.  I feel that way too when I run into new problems!  You feel betrayed like you did everything they asked and you still have issues.  I agree with another person about not using the dilator or perhaps buying a vibrator?  Something you can control the size.  And yes someousais they used oralgel to numb the aforementioned area.  Don't aak if you can use it internally or not I have no idea.  Hoping you Re doing better now.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2914
Joined: Mar 2013

darlin', you can vent this group anytime!!  

You have a lot going on, so your problems may be exacerbated by the other health issues.  For me, lying down is the easiest using the dialator.  As for lube, it is traditional K-Y, not the really thin "Ultra" stuff.  That doesn't stick to the darn thing like you need.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Please call your doctor and ask for some numbing cream. In my opinion, there is no reason for us to have to endure a painful exam. I'm the one that uses Orajel to numb the area before my exams.  I'm finding that since my hysterectomy and going through chemo that it doesn't do as well as it did before. But, it still helps a lot. I have not yet had the radiation so I don't know how that is going to effect my already "broken" area. Scares me to death.  The reason I'm suggesting something other than Orajel is because it burns when you first put it on. So, I'm hoping there is something out there for you that won't burn your already fried area.

If they can't provide anything, then they need to give you something to knock you out. Maybe like what they use before a colonoscopy?

Take care of yourself and I hope you start feeling better soon.

Love and Hugs,

Cindi

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

After being almost 3 hours late, the Dr. Finally came in and gave me an internal and Pap smear. I told him I have been in a lot of pain in my pelvic area plus inside my vaginal area. He said he will be very gentle and use a child size speculum. He was very gentle but it still hurt so bad. I cried out in pain. He said he was sorry I was hurting so much but the good news is that everything inside was healed with no signs of scar tissue and I didn't have to use the dilator anymore since was all healed open the way it should be. I could not understand how I could be in so much pain and him telling me everything looks very good insie.

he said if the nausea and tightness in my stomach still bothers me he would send me for a cat scan to make sure no cancer is starting problems. He said it's too soon since my chemo and radiation and that the cancer shouldn't recure that soon. He said to check with my neurologist to see if the stomach and nausea could be a M.S. flare. If not then to call his office to make a appointment to get a cat scn.

I asked him again about Why my insides hurt, ache and burns so bad. And if it could be nerve damage that will always be with me? He said he didn't know why I'm hurting so bad but I should be thankful that everything looks good and there's no signs of cancer and that my blood work was very good.

I am thankful but I'm thankful and in pain and I don't know why.

its going to be a pain pill night tonight.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2914
Joined: Mar 2013

Annabelle, please remind me, did you have internal radiation???  If you did, please see the medical dialators out there, they start very small and increase in size.  You will continue to have exams in the coming years and this is all about making those exams possible.  

Doctors need to listen to their patients.  I know two women who have passed or are dying because their doctor never listened to them when they talked about pain.  If possible, maybe you can see a second opinion.

Be king to yourself.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Annabella, you have been thru so much and you're a champ.  I would not stop using your dilator because you will continue to have pelvic exams.  I went on the internet way before I had radiation and actually ordered a couple different sets before I had radiation so I could get the hang of it beforehand.  I had three rounds of radiation last summer following radical surgery and chemo.  I went to the drugstore and got myself some vaginal lubricant (I found gel works best).  I use the dilator  propped up in bed watching TV and try to keep my sessions around 5-10 minutes.  The nurses in radiology told me I only needed to use it for 5-10 minutes a few times a week.  I do it about once a week now to keep everything open and supple and it seems all I need now.  The up side is that it also makes sex much easier and I was nervous about sex for a long time after all that I went through.  My husband was very gentle.  But the dilator is important.  Find a lubricant and position you like and I think in time things will be better.  Your body has been through a lot. It takes time.  Take good care!  Hang in there!  Fondly, Helen

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Annabella, I am so sorry you are going thru so much pain. Your doctor does not sound very empathetic! It's hard to be excited about good results if it doesn't feel that way! How arrogant! It is obvious that something is going on and needs to be addressed. 

Had you had vaginal pain in the past or did it begin after the radiation? I had 3 internal radiation sessions in June of 2014. I have had very little vaginal scarring, but I still experience some pain when using the dialator, even after almost 18 months. I never had a vaginal pain before my surgery and radiation, so I am sure it is due to the radiation.

The side effects of chemo also take quite a while to go away and can leave you feeling fatigued as well as feeling the effects of things like peripheral neuralgia for quite sometime. You had so many health problems when you began treatment, I think the toll it has taken on your body is much greater than normal. Hopefully time will work its wonders and you will move away from this suffering. 

Perhaps your regular doctor can confer with your gyn/onc to delve into what is causing your pain. You are in so much physical and emotional stress and need a hand up to give to confidence that you will recover and live a full life. Things are not as bleak as they seem right now. The time that cancer has stolen from you is also the time you have had to gain insights into the meaning and value of life. No one would ever want to go through the pain, suffering and overwhelming fear we have all experienced but it has awakened in us a greater appreciation of all that life has to offer and a fierce rage to grasp onto life and fight like h... anything that tries to take it away!  In peace and caring, Sandy

molimoli
Posts: 514
Joined: Aug 2014

I can't help with the subject but know that I am feeling sorry your load is so heavy,Just keep in mind that this will be just a memory as time passes.You have gotten a lot of great advice , follow some if not all even when your body is saying "I am too tired for that " keep pushing keeping the reasons in mind as motivators. At this moment my heart is there where you are, nudging you to find a way to outfox the depression.We have all been there fo different reasons but have indeed hugged depression.  Nuff hugs, Moli

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