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Had Surgery Yesterday for Vaginal Stenosis and I'm l'm Probably More Frustrated Than Relieved!

cujuja4evr
Posts: 106
Joined: Jul 2010

I had surgery for vaginal stenosis yesterday morning. Surgery seemed to have gone well, but all the other stuff is making me so frustrated I could cry. Onc Gyn managed to removed scar tissue which seemed to have completely blocked the opening, HOWEVER, it disturbed all areas around anus which had FINALLY healed up! Once again, I'm back to painful BMs, bleeding, soreness, and the works! It seemed so long to get to the point of somewhat feeling normal again and now the nightmare has returned!

Not only that, but Onc Gyn gave me a medium and large-size vaginal dialator. The medium dialator is like trying to insert a baseball bat through a hole the size of a green pea. I was told to insert the dialator to the point of pressure, not pain...hold for 10 seconds and release. Wait a few moments and repeat about 10 times. As soon as I start to insert, I immediately feel pain. Dialator is waaaaaaaay to big! I was given an estrogen cream to insert at bedtime for the next 4 weeks and the applicator can barely fit and the applicator is narrower than my pinky finger! It took a long time just to insert it and when I removed it, I was in so much pain I was miserable.

I called the doctor's office twice today and I never received a call back. Now I'm afraid of having a BM. I didn't have one yesterday. I passed a very small stool this morning, but as soon as I felt the burning, I stopped myself from going any further. Now, my stomach is cramping and I know sooner or later I'll have to go to use the bathroom.

I guess I'll have to go back to some of the advice that I've been giving others and try to pass my stools in a very warm sitz bath to ease some of the pain. I've been applying aquaphor throughout the days. I think I may have a fissure because the surgery may have torn some of the skin inside and around the anus.

I'll be glad when this is finally over...or is it ever going to be over???

I'm so frustrated at the moment. Just had to vent!

Judy

mp327's picture
mp327
Posts: 3980
Joined: Jan 2010

I'm sorry you are so frustrated right now. It's like one step forwards, three steps back. I had made good progress with dilator use and had been able to go up one size, that is until my May PET scan showed activity in my upper vagina, thought to be inflammation. So as not to cause anymore damage, I quit using the dilator until I had the follow-up scan in late July. Luckily, the vaginal activity was gone, but then I had to start all over with the smaller dilator and have not been able to use the bigger one yet. As for the BM's or lack thereof, make sure you drink plenty of water and you might want to begin using a stool softener. I just recently began using Dulcolax (not the laxative) and it is helping to make my BM's much more comfortable. I started with one pill a day, but am now up to the max dose of 3 per day and have noticeable improvement. I was having a lot of pain with BM's, bleeding and soreness that never seemed to go away. Things are much better now! I know this is discouraging, but please don't give up.

z's picture
z
Posts: 1395
Joined: May 2009

Hi Judy,

I'm sorry your having such issues. I know how you feel about finally the anal area healing and now this that caused irritation. I know my oncologist did a dre and it caused the perianal area to bleed, as the skin is so thin. could you possibly use your fingers to try to stretch the area on a daily basis, I know the dialators are hard plastic and your fingers would be more gentle. Of course use lots of lubricant. I had to use the estrogen cream for a while and it really helped toughen up my skin and ease the pain. I hope that this will get better for you each and every day. Lori

cujuja4evr
Posts: 106
Joined: Jul 2010

I know at this point that there is nothing much to do, but grin and bear it. I just have to go back to sitz bath, aquaphor, and everything else I did to relieve pain and suffering. It is like one step forward, three steps back, but I made it through before and I'll have to do it again. What is a dre and what does the doctor do? It sounds like it's a painful process like we need more pain than we've already endured, right?

My perianal area is swollen and the skin around the anus has definitely been irritated because I feel the burning when I urinate and the urine splashes on that area.

I just look forward to getting better.

Thanks for your encouragement and suggestions. I appreciate you more than you may know.

cujuja4evr
Posts: 106
Joined: Jul 2010

I haven't been on the board in a while because I began to get depressed and I found myself venting more than encouraging others. I have been very frustrated with my care team. I had a consult with my onc and when I began explaining my concerns, he just turned away from me while I was talking and started typing on the computer. He then said, "I'm going to print out the national guidelines so that you will see that we aren't making this up as we go along." When he said that I felt that I was alone in this battle. It seemed like the onc was more concerned about covering his butt and the rad's butt. He tried to tell me that since my tumor was 2cm and it was caught early, scans are not even required...So, I guess I won't be getting any scans now or ever. I'll be questioning everything for as long as I live. I know I should just be positive and believe that the tumor is gone and that should be good enough. I hate this feeling of "not knowing". I have gone through so much pain, agony, and suffering and I still don't feel that it was all worth it because I really don't know if it worked. I now have a lump the size of a peanut M&M behind my right ear. My husband discovered it a couple of days ago and now that's just one more thing to be worried about.

As far as my onc gyn, she apparently is close personal friends with my onc and onc gyn was very nonchalant about the whole issue of vaginal stenosis and said she basically agreed with my rad and NOT with my gyn. I'm so confused over this whole thing. My vaginal canal seems smaller than it has ever been. I cried last night trying to insert applicator with estrogen cream because it took forever to go in (even with KY Jelly) and it was painful.

But, I'll be dam**d if I'm going to give up. I have to take a proactive approach to this thing because it doesn't benefit anyone else but me and my family. The care team are getting paid anyway so what difference does it make to them. I called the doctor's office twice yesterday because I was having problems following my surgery and I haven't received a call back yet. It's so nice to know that they care! I called my insurance company to see if they will cover the cost of a vaginal dialator set I saw online and they said I just need to give them a procedure number and they could look it up. Even if they don't pay for it, I don't care...I'm getting it anyway and I'll just have to do this on my own.

I do thank you and others on this board because you make me feel human. It's nice to know that there are others who are willing to listen and provide suggestions to help me in my journey. Thanks again.

z's picture
z
Posts: 1395
Joined: May 2009

A DRE is a digital rectal exam, and when the onco did it it I could feel the pressure up to the rectum, which is the proper way to check for any growth. I think that even if the tumor was 2 mm after tx you should still be scanned. I think that the guidelines will tell you for certain. I am just upset they didn't give you dialators from the radiologists, after your tx was complete. I received dialators from the radiologists, right after tx was done. I used the dialator about twice a week, but when I took my shower I would use my fingers as that was more gentle and I could control the pressure better. I had a paps smear this year and the gyno PA was able to access my ovarys, so I know what I did worked. I still use the dialator and I need to start using my fingers again. I know the estrogen cream really helped me, as I don't have to use it as often, only when I get really dry. I know you won't give up, and this is certainly the place to vent. Lori

lemonade
Posts: 63
Joined: Feb 2010

Just for your information - I got my dilator set on Amazon.com of all places. I was googling where to buy one and there it was. It is endorsed/made by Dr. Laura Berman and it cost about $50 I think. She had a couple of different ones on the website.

Barbara

ranelle65
Posts: 63
Joined: Jul 2010

I was talking to my husband about all this, along with the challenges I'm facing today and he is discouraged. I think when I talk to my gyn dr on monday afternoon, I'll ask for her advise to re-dilate the vagina with minimal pain.

tiny one
Posts: 467
Joined: Jan 2009

I have found the following to be helpful for me, it may help you. Astroglide works well for me. Start out with your small dilator, use lots of astroglide. I put a massager in the pubic area to help relax. Then I use the next size dilator. After I've been using replens every three days. I've been not feeling any irritation since using replens. I had narrowing after radiation and have not been using a dilator. I had an ileostomy reversal and had alot of frequency, pain and soreness. I was in alot of pain and didn't want to even attempt to feel more discomfort. I hope you start feeling better soon.

ranelle65
Posts: 63
Joined: Jul 2010

What is an ileostomy reversal?

tiny one
Posts: 467
Joined: Jan 2009

An ileostomy is similar to a colostomy. It is a part of intestine brought to the outside of the body, this is called a stoma. Basically the waste goes into a bag and has to be emptied periodically. Reversal is the surgery to connect the intestine back to start going to the bathroom normal again.

Ladymaule
Posts: 3
Joined: Oct 2011

I had stenosis and had to have surgery in march this year and unfortunately I am back to square one and have to go back to theatre
How are you gettin on ?

Ladymaule
Posts: 3
Joined: Oct 2011

I had stenosis and had to have surgery in march this year and unfortunately I am back to square one and have to go back to theatre
How are you gettin on ?

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Judy,

I can definitely relate to the baseball bat through the green pea hole! That is just how I felt when I tried to use the medium sized dilator that my rad onc gave me. I thought he must be joking! I had my first appointment with my gyn onc about 10 days ago (I'm 9.5 weeks out from treatment). I would love to share the protocol that she gave me. It is working for me. I can now get the medium sized dilator in with minimal discomfort and concentrating on relaxing.

"Post Radiation Vaginal Stenosis Protocol"

1. Apply Premarin cream, 1/3 of applicator, inside the vagina every other day. Save a little to use on the vulva.
2. Alternate steroid cream (prescription strength) with hormone cream every other day. Apply to vulva.
3. Apply unflavored Crisco shortening to the vulva once or twice a day to prevent drying and cracking. (She said it works better that other ointments)
4. Once or twice a day, either you or your partner needs to put xylocaine jelly (prescription topical anesthetic) on your finger and insert finger into the vagina. Put pressure downwards, towards the anus, to massage this muscle. Advance finger into the vagina and massage the inside to dilate.
5. As you heal and as your vagina becomes less tense, you can use dilators of increasing size to continue stretching the vagina.

This seems to be working for me. I started out with the smallest vaginal dilator offered by http://www.soulsourceenterprises.com/. Their silicone dilators really are the best because they are pliable and not rigid. The main key for me is that I coat the dilator with the xylocaine jelly and gently and slowly insert the dilator. The numbing action of the xylocaine jelly is what allows me to advance the dilator. I can now get the medium one in about 4 inches or so. I move the dilator in a circular fashion to massage that muscle at the opening where it is the tightest. My husband (always my bright spot) has suggested, "maybe I should put the xylocaine on my penis..." He makes me laugh!

As far as BMs, I take miralax (generic) every day. If I do not have a BM each day, I also take one senna in addition to the mirlax the next day. I pay attention to keeping the BMs soft enough to not cause pain.

I hope that there is something in my reply that may help you. Let me know if it does, or if you have questions. I'm still learning too!

Wishing you great success!
Mary

By the way, I paid for the dilator out of pocket. It was worth it to me to not hassle with insurance over a $20 item.

sandysp's picture
sandysp
Posts: 862
Joined: May 2011

I am aghast at all this. My Radiologist gave me a dialator packet with all sizes and lubricant on the first visit and told me to use it twice a week all through treatment. Because I had been on this site I recognized that this was important. It may be because of the location of the tumor - mine was south rather than north, but I have not yet had any urination symptoms.

As far as BM's that's another story. My doctor recommended Colace (I was taking Ducolax) and I can tell you it's a much better product. Solved my problem - I take up to six a day religiously.

I would be very frustrated and be looking around for better care if in your situation right now.

JujuC
Posts: 2
Joined: Jan 2017

Judy, 

I am in the same boat as you were a few years back. I'm checking in to see how you are doing after reading your post today. 

Could you tell me where you were seen and what kind of surgery you had? I'm hitting one brick wall after another here in South Carolina. 

My GYN gave me an Rx for Vicadon. Said to take 2 and "try harder".  Yup. 

Any insight would be greatly appreciated! Take care, (Also a) Judy :) 

 

Phoebesnow
Posts: 560
Joined: Apr 2011

5 FU' S to that!  

 

Please advise us us of treatment dates and what you have tried so far.  I have heard stories of complete closures opening with Premarin cream and dialotors.  Do not give up hope!  

rlr000dc
Posts: 51
Joined: Feb 2017

Is this something that all of us should be concerned about? I still have swelling of the vulva along with other issues but havent thought of this even happening ugh!

eihtak
Posts: 1220
Joined: Oct 2011

Hi,

This seems to be yet another thing rarely discussed prior to treatment. I don't remember any of my doctors mentioning this potential side effect, but it could have been that so much information is shared at the time and not all is absorbed. My radiation doctors nurse briefly discussed using dilators at one of my follow-up appointments, but it was information on this forum that was most helpful to me in this regard. 

I ordered a set of dilators from an on line company called Vaginismous.com  I did not start using them until about a year post treatment so may have been easier if started sooner, but it was still not too awfully painful. I began for several weeks with the smallest size and gradually increased a couple sizes over time. In the beginning I was faithful about daily use but have most definately slacked off over time. (Its been over 6 years since I was dx now) 

I still request a pediatric speculum when I have a pap test, and while my doctor is very gentle, I have slight pain and much bleeding. (This could be due to my slacking as I did not have that when I used the dilators more routinely) Sex is not a concern for me at this time, but if so, I strongly suggest ordering a set. I found it most comfortable to use lots of lube and just insert when showering or bathing and just kind of hold in place for a while. Ugh!!! Sorry to add yet one more thing to this journey for you.....but this is just one of those radiation induced gifts!

katheryn

sephie's picture
sephie
Posts: 644
Joined: Apr 2009

i was soooo swollen , bleeding in that area that i could feel the tissues between my legs.....MD Anderson nurses (with My permission)  came to see the damage as a learning tool......radiation does this.....it took weeks to go down but the docs were correct that it would go down after radiation was over.....sephie

Mollymaude
Posts: 182
Joined: Nov 2016

If you are female, yes! I think all of us have had vaginal stenosis and scarring to some degree or another Post radiation. My suggestion would be to be proactive and ask lots of questions. Talk to your radiation oncologist and or your gyn. I really regret not following my instinct to get my IUD pulled before treatment- I asked and was told don't worry about it and now it is scarred in. Some women on this site say their radiation oncologists gave them dilator sets, mine said something about it briefly at the beginNing of treatment and never gave me a dilator or asked about it again.

rlr000dc
Posts: 51
Joined: Feb 2017

Thanks for the input and the resources to buy the dialators from. My rad never mentioned this, he had the compassion and consultation of a wet blanket and i was happy not to deal with him anymore! My chemo dr knew nothing of this and wants me to see a gyno. but im sure i can deal with this on my own now.Smile

The dr allowing you to leave the IUD in really concerns me? wouldnt that be grounds for a lawsuit? Seems so neglectful but no ground for lawsuit unless something becomes of it, which i hope doesnt!

I want to get my port out (its been flipped for 8 months/mo flush) but chemo dr says wait two years? he originally said one (this apr) says he wants anascopes every 3 months. any suggestions?

he recommended i get port flushed and tried making me yesterday but i refused. it hurt tremendously bad last time! (but i was short 3 pints of blood) idk i just want this done!

rlr000dc
Posts: 51
Joined: Feb 2017

Anyone have some diet changes they have had success with? I have a nutribullet. Its not as bad as i thought it would be. I like receiving the benefits of the vitamins from the drink mixes that i make, since i dont eat as much lately. I try not to eat sugar every day like i used to thats been the hardest part. After chemo i was on a fountain soda and ice cream diet, ya i know!

also wondering if i should limit the amount of time i spend in the sun? that my favorite too that i will probly have to quit:(

mp327's picture
mp327
Posts: 3980
Joined: Jan 2010

I have had no success with dilators in regards to getting back my sex life.  I used to use them regularly, but since they haven't helped, I only use often enough to keep things open for gyno exams.  That said, others have had success, so get a set and use regularly to see what happens for you.

I had no such problems with my port, but fortunately, my med onc allowed me to have it removed after 3 months post-treatment.  It sounds like yours has been somewhat problematic and I'm sorry your doctor will not give the okay to have it removed yet.

As for diet changes, I have a Nutribullet too, but rarely use it anymore.  I should probably get it out again and put it to use to improve my diet.  I guess I just suffered from burnout on eating all of that healthy stuff!  I am somewhat addicted to sugar, which is not good, and I love my chips and salsa.  I'm bad!

Sun exposure is good in small doses.  I love to be outdoors and have gotten better about using sunblock, but maybe still have a ways to go.

 

rlr000dc
Posts: 51
Joined: Feb 2017

are you dealing with your chronic kidney disease okay? I seen it on another post just wondered.

mp327's picture
mp327
Posts: 3980
Joined: Jan 2010

Thanks for asking.  The kidney disease was quite a shock.  I have been able to improve my kidney function from stage 3 disease to stage 2 (at last check with the nephrologist) through adequate hydration and a few diet changes, mostly cutting back on salt.  The thing about kidney function is that it can fluctuate greatly from day to day or even hour to hour.  Of course, I'm never aware of those fluctuations, as there really are no symptoms.  For example, when I saw my nephrologist in December, my kidney function labs were all within normal limits, which was great news.  However, when I saw my medical oncologist for my yearly visit with her in February, she ran labs, including kidney function, and those were the only tests that were abnormal.  It is a daily struggle for me to get enough water, as I really don't like to drink water!  I always try to get at least 72 ounces and even more if possible.  It will always be an ongoing struggle for me.  I just hope and pray I never end up needing dialysis.

Martha 

Mollymaude
Posts: 182
Joined: Nov 2016

If you are like I was you are just tired of having medical appointments so gyn can wait but don't put it off forever. You want to be sure you still get regular exams and pap tests. I'm like Martha just need to have things open enough for gyn exam. It is dismaying that there is so much about side effects that was never mentioned or just briefly touched on.

As for diet I too have a sugar addiction but other than that I try to eat healthy. You might get your vitamin D level checked (blood test). I was super low and now take 4,000 IU a day. I've read that half of people with GI cancers have low vitamin D. 

I hated my port, I was always bumping it and hurting myself, hugs could even hurt! I got mine out about 2 1/2 months after treatment. So if you really want it out ,it is your body remember! my doctor said something about leaving port in longer but didn't argue when I asked to have it out. 

Mollymaude
Posts: 182
Joined: Nov 2016

My chemo dr says CT yearly, anoscopy every 6 mos to one year, and DRE ( digital rectal exam) every three months. I just passed the one year mark so now he's letting me go a whole four months between DREs!! 

rlr000dc
Posts: 51
Joined: Feb 2017

Thanks for the timely replies! You all are so great! Yep gotta love the sugar, I try to eat something good when im hungry but i still eat some sugar everyday. After tmt I didnt even want a soda (quit 3 yrs prior) then one day i just started drinking it. Im sure you all  have read how sugar feeds cancer? that scares me! I guess i will do the bullet drinks for a while since i feel there are many vitamins to gain from it.

My journaling didnt last very long but I do chant and try to stay positive with my meditation. Recently an old high school acquaintance came into my life and like you ladies on here, I try to encourage her it really makes me feel good when i feel like i can make a difference.

Yes I am so tired of all of this dr stuff!   The infor on the dialators sound legit I was able to insert a finger a lil of the way so maybe I can start there. at least make sure it doesnt close completely! I may make an appt and get port removed before summer? and get anascopes.The only time the port hurts is when the cat jumps or stands on it! I was 3 pints low on blood and didnt know it when i went for fluids thru the port, thats when it hurt worst!  I hated getting lectured on how i needed to drink more liquids. Dr asked me to use two enimas before digital procedure and before the anascope, that really didnt make things any better.  At least for the colonoscopy i could just flush out!

Congrads on the 4 month exams! how in the world do you get them not to hurt? and are yas getting anascopes as well?

Rhonda

mp327's picture
mp327
Posts: 3980
Joined: Jan 2010

I love sugar too.  My dearly departed medical oncologist who was the doctor who saw me through treatment from the beginning until December 2015, when he suddenly died, had the sugar discussion one time.  He didn't seem to think there was much to the theory that sugar feeds cancer.  He was a very smart man and a great doctor and told me "everything was okay in moderation," even tequilla!  I had to laugh about the tequila, although I do enjoy it now and then!

Getting enough fluids is difficult for some people, including me.  I think it's further complicated by the fact that my bladder doesn't have the capacity that it had before treatment.  If I drink too much water, then leave the house, the first thing I must do when I reach my destination is find a bathroom.  It frustrates me to no end!  Road trips are the worst!  I can tell you where every rest area is between my house and where all my family lives!  Cry

You will continue to heal.  I know it is a little discouraging right now, but your body just needs some time.

Martha 

Mollymaude
Posts: 182
Joined: Nov 2016

The rectals  do get less painful with time. I had an anoscopy in November last year and plan to wait until November to get the next one. I think stress is worse than sugar so I am not worrying too much about eating sugar. Just trying to keep stress level down and do deep breathing five minutes a day ( need to get back to that, I've been on vacation!)

rlr000dc
Posts: 51
Joined: Feb 2017

Wow! thats alota wata! does tea and coffee count as part of that? Mercy lands im about to 24 ounces it does seem like my bladder has shrank as revealed by the many restroom breaks! One tequilla , two tequilla, three tequilla, floor says my favorite shirt i got in Branson years ago. When I drink now it just makes me sleepy...No symptoms with your kidney trouble huh? Did that happen long after the anal cancer? geesh. Glad your stage went down to two maybe it will get lower with time. I am hopein you never need dialysis!

Sorry to hear about your fav dr passing, its nice to get one you trust and can turn to. I think i agree about the sugar and everything in moderation is better hopefully. All we can do is wait and see.

When we go to meet Molly in New Orleans we will need to search down a bathroom huh?lol.. HI Molly!

mp327's picture
mp327
Posts: 3980
Joined: Jan 2010

My nephrologist told me that tea and coffee, since they contain caffeine, which can act as a diuretic, only count about half when including them in fluid intake amounts.  When I make coffee, I do half caffeinated and half decaf.  As for symptoms with the kidney disease, I had none.  It was discovered through blood work.  I was treated for anal cancer in 2008 and diagnosed with kidney disease in October 2015, 7 years after my treatment ended.  I cannot prove that treatment or contrast from numerous scans caused or contributed to this, but I'm sure it didn't help.

My doctor suddenly passing away was a huge shock.  It was devastating news to so many people.  I attended both the visitation and funeral and there were so many of his patients in attendance.  So sad.  You really hang all of your hope on your doctor(s) when you're ill.

rlr000dc
Posts: 51
Joined: Feb 2017

that makes sense about the caffine actually. as far as the kidney disease just wondered what i may have to look forward too. its often a worry with all the tmt and test we have been through!

mp327's picture
mp327
Posts: 3980
Joined: Jan 2010

It is a worry for me too.  Radiation all by itself can cause other secondary cancers, such as leukemia.  I will never know what caused my kidney disease.  All I can do is try to keep it from worsening at this point.

rlr000dc
Posts: 51
Joined: Feb 2017

Congrads on passing a year! Happy to hear you are mobile and feeling good enough to enjoy vacation!

Thanks for saying that about the stress, I had been considering that as a factor. The last 4 years of my life it was one thing after another. I try to avoid it now too. Most things seem insignificant after having cancer to me. I still feel tired now and that makes me wonder how tired i was before with cancer! Some tiredness may be from the nerve pill i take. I cant wait to feel more active, maybe summer will help. Getting out in the yard and seeing the sunshine will be nice since i was sick all last summer.

Mollymaude
Posts: 182
Joined: Nov 2016

Funny you should mention bathrooms! They were few and far between in the French Quarter unless you were eating at a reataurant. I'm sure with all the drinking that goes on there I wouldn't want to have a bathroom open to the public either. My need to go so often really has gotten better with time. I got a couple of prescriptions for frequent urination and the first one made me have such a dry mouth I drank more water which kind of defeated the purpose. Then I got mybertriq and never even tried it because I didn't really want to add another medication.

We did have a great vacation and it felt so good to be able to be mostly normal. Of course I got diarrhea with all the different food, but oh well. At least it gives me priority on the bathroom when we're all sharing one!

rlr000dc
Posts: 51
Joined: Feb 2017

Sounds like you were trying to fix both ends! bet that was  rough with few bathrooms! and i dont blame you for not wanting more medicine!

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