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5 YR ANAL SURVIVOR.. VAG. STENOSIS NIGHTMARE,,CRYING, CAN DIALATORS WORK AFTER ALL THIS TIME?

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hi Everyone, PLEASE I BEG...CAN YOU READ THIS FULL POST....IM IN TEARS

I have made a post under PLEASE HELP ME, 5 YEAR ANAL CANCER SURVIVOR, I am just desperate now, for help, I am a 5yr anal cancer survivor, I also had breast cancer 3 yrs prior to
anal cancer, neither were related.

After, about 1yr and a half i started noticing abnormal bleeding via vagina, the radiologist MD who was in charge of the anal cancer treatments, NEVER told me about dialators, i find out about them via another doctor....2 yrs ago, I have also with a gyno and gyno oncologist gone into operating room 2 yrs ago...with a spinal tap...to see if they could get to the uterus, and or give me a PAP, they tried cutting out scar tissue, but still couldnt get to the uterus or cervix.....she was afraid to poke a hole into the rectum so she stopped.

Why in the world do they radiate the pelvic organs when its not necessary? My lymph nodes were negative and why the heck wasnt i told about he dilators, i am 49 now, never married no kids, i feel an injustice was done to me and us, why the doctors dont discuss things before hand with us about complications???????????????????

Since that abnormal bleeding 2 yrs ago, it has stopped, but at times i see some brownish
or red....all they tell me to do....is do pelvic ultra sounds and MRI?????????????

This past Saturday, I bled very black, and brownish blood, in the toilet it was dark
brown, with a tint of redness, I AM SO UPSET, THAT THEY CANT GET UP THERE TO GET NOT
ONLY A UTERINE BIOPSY, BUT NOT EVEN A PAP???????????????

Being i am a breast cancer survivor of 9 yrs.....my cancer was based on ESTROGEN,
SO THE GYNO IS SKEPTICAL........ABOUT PUTTING ESTROGEN UP THERE....TO TRY TO OPEN
IT....I HAVE PRACTICED WITH DILATORS, MAYBE NOT ENOUGH I DONT KNOW, BUT I AM VERY
HEAVY AND.....THIS IS EMBARRASSING......BUT MY MOMS HAD TO HELP ME.......its painful
but i got to the large one....but...i was considering...purchasing a DILDO? WHICH
MAY BE MORE SOFTER?

Can anyone help me...anything, any ideas, suggestions....anything? what can i put
up in there besides dildo, dilators, and or what creme??????? since i cant use
estrogen....or can i use a bit of it ??????? does it go through the blood stream
or not??????????????????? Does the ESTROGEN just absorb in the vaginal???????

IS THERE ANY HOPE OF GETTING TO THE UTERUS OR CERVIX SOME WAY????????? ANY WAY?

z's picture
z
Posts: 1267
Joined: May 2009

Hi,

I'm sorry your having these issues. You can get dildos that are very soft, like a human, and you may use a non oil lubricant specifically for lubrication. I suggest lubing up the area and the dildo and just slowly insert. This needs to be done everyday. I initally used the plastic dialator and my fingers to keep it open. I hope you will get some relief with this. It really upsets me that the drs didn't warn you about using dialators. I Lori

cujuja4evr
Posts: 106
Joined: Jul 2010

I just had surgery this past Thursday to remove some scar tissue to open up my vaginal canal. Apparently, the scar tissue completely blocked the opening. It opened the canal, but the canal is so very small that it seems impossible for anything to fit. I was given a medium-size dialator...of course after 4 months post treatment! I'm trying to stretch my vaginal canal, but it's like trying to fit a baseball bat through the hole of a straw. It is not the most comfortable feeling in the world. I think I cried the first couple of times I did it because it was painful and because I thought that I will never be the same again. But, after I got over my pity-party, I continued to use the dialator on a daily basis. Hopefully, it will work.

Oh, the reason I call it a pity-party was not to offend you, but one thing that I realized very quickly is that even though we have a good support team on this board, we are still responsible for our own individual recovery. If we want to get better, we have to put the work in ourselves to improve our own bodies. Believe me, I know the frustration. I'm angered by my rad not telling me about vaginal dialators. I understand completely. But, I'm not going to sit around and complain about what the rad did or didn't do. It's too late to do anything about it because the damage is already done. It's sad because it's like the rad doesn't even care! So, since it's my body, I have to do what is necessary so that my husband and I can get back on track with our sexual activity.

I'm also using estrogen cream at this time which is supposed to help heal and strengthen vaginal walls.

Hang in there! Don't give up!

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

They seem to help me some. I don't my sex life will EVER be the same. I'm 46 and this sucks.

DreamWeaver812
Posts: 1
Joined: Feb 2012

Is this a product you can use every day to make it less necessary to use a lubricant before sex or dilator use?

mp327's picture
mp327
Posts: 3077
Joined: Jan 2010

Yes. However, I doubt that after having radiation therapy, a woman would ever be able to do either without using a lubricant. I happen to use AstroGlide.

shirlann54
Posts: 161
Joined: Aug 2011

My Radiation Dr didnt tell me any thing about a dialator. 2 mo after my treatments my husband and i tryed to have sex .Couldnd do it. wouldnd go in but maybe a inch or 2 it had been over a year no sex so i wanted to dry it .Glad we did .So i called the Dr they have me a dialator.And it was very painful He did send me to a gyn.He started me on the cream premarin vaginal cream .That helped me the most i put it in 3 times a week.We can have sex now .Its not like it was .I'm smaller inside like shorter in side .the gyn Dr said i would allways have to use this cream for ever.The cream healed me. Good luck hope it works for you

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

the softest dilators are from soulsource.com. I started with #3. then #4 then #5. use lots of KY on your vaginal entrance and on the dilator. go slow. try to rock it back and forth at little at the entrance. I do not know if they knew as much 5 years ago or where you were treated. always something that we have to deal with because of anal cancer. order these on line. there are 2 sets of dilators .be sure to get the ones for vaginal stenosis , not the ones that people use when they have a sex change. hopes this helps

CharlotteW
Posts: 7
Joined: Apr 2010

Even the name sounds awful! I'm 3 1/2 years out with anal cancer also. I don't think the doctors realized back then what was happening to all of our vaginas. I also had to have a pelvic ultra sound because she couldn't find the uterus. After using dilators and cream for 3 months I had a pap smear on Friday! Never thought I would be excited about that. Just keep on trying. She told me I have the vagina of a teenager and I'm 61. Sex doesn't hurt but it's not quite the same as before. Everyone should make it a point to get their doctors to tell people about dilators during and after rad. Good luck to you!

Threeedogmedia
Posts: 2
Joined: Oct 2010

I too have severe vaginal stenosis. When I saw my gyno for the go ahead for sex after my colostomy surgery and hysterectomy and follow on chemotherapy, it was a year from the time of my surgery because I felt so bad for that long. My whole saga is on my personal bio. My gyn told me I was no deeper than 1.5" and about as big around as a pencil. I was so darn angry! My rad oncologist never told me about dilators and I'm now seeing an attorney because of all this. My friend who is a physician in another state sent me some dilators and coached me how to use them. I'm making some progress but not enough for my husband and I to have sex. Are any of you from Washington? I would love to talk to someone else who had the same kind of treatment to find out what the standard of care was from your doctor and hospital.

I'm new to this board and am thankful that I can communicate with others who had the same kind of cancer. I'm desperate for advise.
Karen

janet
Posts: 3
Joined: Oct 2010

I am in washington and my doctors never told me about my vagina closing, just how painful treatment would be but nothing about what would happen after. So 1st I'm hearing about dilators and it's been 3 yrs for me, probably will never be sexual again is how I feel.. I understand your pain, I am so sorry....

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

about this situation and told them I would keep on loudly complaining until it is part of the standard protocol to have women use dilators early on.... The new site at UCSF doesn't mention any precautions on this as part of protocol unless I missed it! Really makes my blood boil. Another case where I feel women are second class citizens -that "they" thought it wouldn't matter to us or our unlucky men!!!
I still don't feel comfortable that ultrasound will be as good as Pap smears - and there is no way to get a Pap smear from me.

chelceyrose
Posts: 6
Joined: Jan 2011

Oh boy - this is so much like my story. Am starting my 3rd year being free of anal cancer. Like some here I also have vaginal shrinkage. I wasnt told about the dilators until 2 years post treatment. I have tried them - only to keep things opened enough to do pap smears.
Intercourse is a thing of the past. The problem is scarring in the vagina due to radiation.
One doc told me he could remove the scar tissue, but when I asked 2 oncologists about it - they said dont do it - the scar tissue is the only thing giving vaginal wall any thickness. To remove scar tissue would in all probability cause such a thinning in the vaginal wall - would lead to a fissure - the rectum pokes thru the vaginal wall. The end result of that would be a permanent colostomy. It really ticks me off that the oncologists dont tell you about these possibly permanent side affects. What my oncologist told me when I went to him to complain - "you must not realize how lucky you are to be alive". My tumor was over 5 1/2 cms and had tenticles.

In 1988 I had a hysterectomy - cervical cancer. But I still have paps to check for vaginal cancer. I am 55 but wasnt ready for intercourse to be a thing of the past.

Dont ever feel embarrassed to ask questions. Here I believe we are or have gone thru the same things. God bless you. Will keep you in my prayers....

LOLLI64
Posts: 4
Joined: Jan 2011

THIS IS MY FIRST POST TO THIS SITE. ALL OF THE STORIES SOUND SO MUCH LIKE MINE. I AM 2 1/2 YEARS CANCER FREE. I HAD A 10 CM. ANAL TUMOR THAT HAD SPREAD TO THE FIRST LYMPH GLANDS. I RECEIVED 36 RADIATION TREATMENTS AND FOUR MONTHS OF CHEMO - OXALIPLATIN AND XELODA, WHICH WERE ALL EXPERIEMENTAL. THE RADIATION SCARRING HAS ALMOST CLOSED MY VAGINA. I AM A 46 YEAR OLD DIVORCED WOMEN WHO WOULD LIKE TO HAVE SEX AGAIN, BUT I DON'T SEE HOW THAT WOULD BE POSSIBLE. I AM THANKFUL TO BE ALIVE, BUT SOMETIMES, I FEEL LESS OF A WOMEN.
NO ONLY THE SCARRING, BUT I ALSO HAVE TERRIBLE LEG PAINS, AND THE DR. SEEMS TO THINK IT IS DUE TO SCAR TISSUE CONSTRICTING THE NERVES FROM MY LOWER BACK TO MY LEGS.
I AM SO GLAD I FOUND THIS SITE.

z's picture
z
Posts: 1267
Joined: May 2009

Hello and welcome. I am so glad you are cancer free for 2 1/2 years, this is great. Did the drs use the different tx due to the size of the tumor? I know that there are surgerys that will open you back up again, if you want to do that. I know its difficult with the side effects of the tx we receive, but the cancer has to be stopped. I wish you well. Lori

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

Lolli64
So glad you found this forum. Congratulations on being 2 1/2 years NED. Your journey will inspire many of us here and those that are just beginning their journey. We know how difficult the post treatment side effects can be and I am sorry you are suffering through that. I hope that there is a remedy for you.

Your chemo regime is very different from what most of us had. Was the cancer rectal with the tumor in the anal canal? Regardless, I'm so happy that that the treatment was successful in eradicating the tumor and disease.

Thank you for sharing your story.

LOLLI64
Posts: 4
Joined: Jan 2011

THANKS FOR THE WARM WELCOMES. MY TUMOR WAS ANAL, AND I WAS TREATED AT MD ANDERSON HOSPITAL IN HOUSTON, TX. I WAS GIVEN THE OPTION OF TAKING STANDARD TREATMENTS, OR THE OPTION OF THE NEW CLINICAL TRIAL. AFTER MANY PRAYERS I DECIDED FOR THE CLINIAL TRIAL, BECAUSE I FELT THAT IF IT DIDN'T HELP ME, THEN ATLEAST IT WAS RESEARCH FOR THE NEXT PATIENT. BY GOD'S GOOD GRACE IT WAS SUCESSFUL. I AM VERY THANKFUL TO BE ALIVE AFTER STAGE III CANCER, AND I REALLY TRY NOT TO COMPLAIN ABOUT THE SIDE EFFECTS. THIS SITE IS A PLACE WERE WE CAN VOICE OUR CONCERNS, AND BE UNDERSTOOD. MY MESSAGE TO ANYONE WHO IS IN TREATMENT OR BEGINNING TREATMENT, IS TO STAY STRONG, WE MAY NOT HAVE ANY CONTROL OVER THE DESEASE, BUT WE CAN CONTROL OUR FIGHTING ATTITUDE !!

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

hey, i was also treated at MDA. if you do not mind, who were your docs??? mine were Overman, Delclos, and Skibber. I did regular protocol. they did not send me to one but i asked for a gynecologist for help because I remembered that the PA for Delclos did tell me that my vagina might close up but they did NOT give me dilators until I asked for them (2 months after I was discharged.) I was treated in summer of 2009. this has changed since i was treated. now they have started putting dilators inside the vagina during radiation. they are learning more and more. I am 17 months out but still have pain on left side of anus that they check each time for reoccurance. I was stage 2, no mets, no nodes.

Farrah RIP
Posts: 1
Joined: Jan 2012

My rad doc gave me dilators, but I stupidly didn't use them. My boyfriend (at the time) said, "You never liked sex anyway!" Well, maybe I just didn't like it with him, eh wot? Now I'm angry with myself, and curious about surgery. I did have a temporary colostomy during the radiation, then it was successfully "taken down" three months later. Wouldn't want that again, as someone mentioned that surgery might thin the walls between vagina and rectum. I can't even get my finger inside, and had to actually be "put under" for exams (anal stenosis as well, of course). As I mentioned on my profile, I think I'll create a "No-Sex Singles " dating site. Anybody good with building web-sites? Anyway, good luck to us both! Sorry I'm late; just now discovered this site.

eihtak
Posts: 879
Joined: Oct 2011

I am so glad I read these posts today. I have not even tried to put anything in my vagina since treatment for fear of pain. My doc who I love, has never mentioned any thing about a possible problem. I have an upcoming appointment with a gyn ( a new doc to our area, mine has moved ) and I will surely bring this issue up. At this point I am 8.5 months post treatment and my husband has been sick himself. (just had a bone marrow transplant) For now sex is not an option, but I am only 53 and had planned on being active for a number of good years yet!!!! I have sensitivity when I pee and mild blood tinged drainage daily. (wear a pad 24/7) My guess is I have the same problem as everyone here and hope it is not too late to help. Thank you all for great advice as always. Prayers for all!!!

eihtak
Posts: 879
Joined: Oct 2011

I am so glad I read these posts today. I have not even tried to put anything in my vagina since treatment for fear of pain. My doc who I love, has never mentioned any thing about a possible problem. I have an upcoming appointment with a gyn ( a new doc to our area, mine has moved ) and I will surely bring this issue up. At this point I am 8.5 months post treatment and my husband has been sick himself. (just had a bone marrow transplant) For now sex is not an option, but I am only 53 and had planned on being active for a number of good years yet!!!! I have sensitivity when I pee and mild blood tinged drainage daily. (wear a pad 24/7) My guess is I have the same problem as everyone here and hope it is not too late to help. Thank you all for great advice as always. Prayers for all!!!

wje630
Posts: 14
Joined: Nov 2008

Hi There:

Just started reading the posts again today and thought I would mention a word of caution regarding having surgery to remove scar tissue. After I finished my radiation therapy and had healed from the burns, I was having pain when trying to have sex so I contacted my Gyn(who was not a Onocology Gyn) to see if she could help. Unfortunately, I didn't think to talk it over with my Radiation Onocologist. When he found out about my surgery(after the fact) he was very upset because he felt it was too soon after my treatment and my body was slow in recovering. It has been almost 7 years since I finished my treatments and I still have vaginal stenosis. The surgery to remove the scar tissue did help some but it did not change the fact that the length of my vagina has shortened as well as the opening is much smaller. I saw someone mention on here that her doctor said she was like a teenager again, but I am afraid it's much smaller than that! I also saw on here a reference to a web site who sold soft dialators and I am going to try them. I have a set of hard plastic ones and they are so uncomfortable to use. I have had a hysterectomy so I am not so worried about having a PAP smear, my Radiation Onocologist said they should also watch for vaginal cancer as well.

I am sorry if I seem to be rambling, I like your idea of a No-Sex Singles web site or as my daughter said to me I need to look for a man with a small penis! LOL

I wish you good luck on your recovery, I am due to have another Colonoscopy this year which I dread, but I am so thankful to be NED as of now.
PS I am 69 years old and would still like to enjoy having a sexual relationship again, I am going to try the new dialators and hope for the best.

pjs62
Posts: 95
Joined: Sep 2011

Oh my goodness!! I fully understand how you feel! My 1st dx was July 2010 & I went thru the traditional chemo/radiation. My drs at that time NEVER told me anything about becoming a 'virgin' again! Yes that's how I feel coz I'm so closed up not sure if it'll ever open up again! They never told me about dialators or scaring....looking back I think they just wanted to get my treatment over & done with.
Well Aug. 2011 I was told my cancer was recurrent so I went for a 2nd opinion & found a great cancer center with a caring medical team. This radiologist was shocked I was never told the results radiation would have (vaginally) or about dialators. He gave me a small one to try but it hurts so bad because of how closed up things are. ugh!! I also have some bleeding at times but can't have a pap. So I'm also seeing a female gyn next wk to see what she thinks can be done if anything.
I'm also 49 & have been married 9 yrs. My hubby is such a blessing & so patient. We know things will never be the same & it upsets & angers me. I don't feel like a woman at times....& on top of this I'll be having surgery for a permanent ostomy next month.
Its so unfair how some of us go thru so much & can't get a break, while others breeze right by. But I do my best to feel thankful no matter what life throws my way. I can still enjoy my family, my grandkids....cherish our time together.
I'll keep you in my prayers that things get better for you & you'll find the answers you're looking for.

Phoebesnow
Posts: 451
Joined: Apr 2011

There is another recent post about this cream at the top of this thread. This is some good stuff that really works!

7243
Posts: 223
Joined: Feb 2011

You may want to seek a referral to a uro/gynecologist for a thorough evaluation of your pelvic floor, vagina, vaginal opening, etc., and ask for Physical Therapy for the stenosis. I am currently in PT for stenosis post radiation. It is helping ... the PT actually does internal, vaginal PT (myofacial work) and I have a program of therapy I follow at home to include sexual intercourse, some use of dilators, and manual vaginal myofacial work. I don't know what's available in your community, but there are physical therapists who specialize in pelvic floor, post radiation, pelvic pain, and ohter such female issues ... dilators help, but "sex toys" for lack of a better term can be even more helpful ... small to start out with. My physicial therapist gave me a card for a shop that is "sex positive" and actually works with customers on their individual needs. The stenosis is one issue, the pain response and "guarding" that we have is also an issue. We have to relearn about ourselves in this way ... I am very sorry you're having such issues and can relate. I'm almost one year out from 30 rad treatments with combined chemo. Best wishes and stay well ... I believe it can get better for you.

Phoebesnow
Posts: 451
Joined: Apr 2011

Thank you for that info. And it even sounds like it could be fun. Therapists really are a blessing.

torrance
Posts: 118
Joined: Jan 2012

First time posting. Glad to find a place to share and hopefully help others going through or facing what I have gone through. I am coming up on the one year anniversary of treatment beginning. To the point of this comment, I consider myself blessed that I have found a Pelvic Physical Therapist to help me with the stenosis. Like many of you even the applicator that came with the Premarin was a bit of a joke. But I am happy to report that after several months of weekly therapy appointments and homework I AM making progress. It is slow going, uncomfortable, painful, comical at times, however still progress. I am a real challenge for her as most of her patients come from OB/GYN cancers and they are all instructed to use dilators during treatment and don't end up this severe. My Radiation Oncologist informed me that this collateral damage was possible and highly recommended NOT using the dilators during treatment as it would have been FAR TO PAINFUL. I have a LOT of respect for him and he has been correct all along in addressing my concerns, complications and side effects. Hope this helps others and gives you another option to pursue.

Phoebesnow
Posts: 451
Joined: Apr 2011

Welcome. I found your first post very informative. I found out about the dialator here pre treatment. I did not start using until 3 months after tx. They were not fun so I did not use vey often. I used the Premarin cream and my husband. Although I have shrunk, it feels totally normal inside and is fully functioning. I am glad we are getting the info out there to give others hope for a full recovery in that area. I think the estrogen cream is a key ingredient for full recovery. Martha mp327 has a wonderful system of using them in the shower. If things had not improved for me, that would have been my next step.

janke
Posts: 29
Joined: Aug 2011

Thanks for posting about this problem. I also have the same problem. I had ana CX, under went chemo and radiation. Severely burnt by the Radiation. To make a very long journey short.....somewhere I developed complete vaginal stenosis. I am not a young woman but still very sexually active and did enjoy until I was so severely burnt intercourse was impossible.
I have a prior history of cervical CX, always followed all medical recommendations, and last yar 8 months post radiation my gyno. said .....no vagina!! What are you flipping kidding ME!!!!!! When did this happen!!! and why. Gyno blew me off.

I sought the assistance of my oncologist who said WHAT????????? MY radiation onco. said "this is a side effect" and I sought information on my own. Going to a Onc. Gyno. who tried to do a vaginal exam under anesthesia and ruptured my bladder. They have all washed thier hands of me. I am angry. It's not my falut and why didn't ANY of these medical professionals recommend premarin and dilators along the way??????????

They have made me feeel like it was my fault or something for not continuing to have realtions during radiation. OMG....I had 3rd degree burns exturnally, what the F..... did I look like on the inside, much less my skin whould have just peeled off in layers. I never thought to use dilators nor did I understand the benefits of premarin. I cry every day. And I am in the medical field. I just didn't know about the side effects of radiation. I did ask many many times. Everybody just blew me off. They saved my life..that is all that mattered.

I do understand I am alive and I am more than gratefull. But I think there is more to just curing someone. NOW IT'S ALL ABOUT THE QUALITY OF LIFE. And no one can help me with this.

Angela_K
Posts: 374
Joined: Jan 2011

even though I am not functioning 100% sexually like I used to, I am at a good 90% and after reading these posts I know that I am so fortunate. My doctors educated me briefly before treatment and then thoroughly after treatment (I researched much of it) regarding staying sexually active and/or using a dilator and prescribing Premarin. I can't even imagine the frustration you must have with your doctors.

Whatever you do, please don't give up.

Angela

Phoebesnow
Posts: 451
Joined: Apr 2011

I really feel your pain. The doctors can be so frustrating. Believe me they were not forthcoming bout anything. All they told me was you will be ine, like a sunburn, stay away from the blogs. Ha. Bs, bs, bs. This is where you learn the facts. Keep searching the Internet. Pose the exact questions. The answers will come. Do not give up. Does your clitoris function? Have you tried oral sex or manual stimulation. Try putting the Premarin on the outside, u have nothing to lose only gain. What about hormone patch?

janke
Posts: 29
Joined: Aug 2011

Yes over my pity party today and will consider myself to be fortunate. I can still orgasm, just not penatration. And my bowels and urinary tract are fine.

I guess what I really want to get out there is not about me.....it's aobut all the female newbys. After reading the above post, it seems there are quite a few of us who were not educated about stenosis, or it was briefly addressed and dismissed. I don't want anyone else to be DISMISSED! Or embarrassed about this issue.

My original concern is I have had a hx of questionable pap results, and have a family hx of ovarien and colon cx. Well how the heck am I to have a pap is you can't get there! That was my first problem even before sex.
Some of my doctors say -"don't worry you will never get cervical or ovarian cx" other doc's admit that is a "interesting question but don't know". The end.
Then there is the transgender surgeon who wants to rip out all of my female organs and create a vagina using some muscle and tissue from my upper leg.
I decided against the last --- seeings how all of my female organs seem to be one conneced mass.

I am severely confused for my situation. But I really want to get the word out there this problem might be avoided with a little preventive care and attention for other women about to undergo this treatment plan.

I am currently using the premarin, 3 times a week, 2 grams per application. And I can insert a dilator about 1 1/2 inches without pain. Will things ever change for me? I don't know, I hope I don't give up. The premarin is expensive. Does anyone use a generic?

Then there is always the issue of my marital status. I know this man loves me but good god who determined he should also pay the price. Ok that was stupid, if the role was reversed I wouldn't care if I ever had sex with him again as long as he was healthy and well. And I am pretty sure he feels the same but I just feel it is unfair to him.

God I sound crazy but these are the thoughts that run thru my head daily.

Well that's all I'm going to post for now. I am just going to continue reading post and look for answers

Phoebesnow
Posts: 451
Joined: Apr 2011

Some opening is good, you will get there. Looking thru the history u will see others had surgery. I don't think that is the way to go. you will just form more adhesions, scar tissue. I think it is the Premarin cream. I have had same tube for 7 months,35 on my plan. I use my finger not the applicator, this way you can work yourself a bit too. My doctor recommended this. I think it will resolve If you keep with it.

torrance
Posts: 118
Joined: Jan 2012

Janke,

I know that 1 1/2 inches doesn't seem like much, hang in there. Before I started my "therapy" even a q-tip was not possible. I can proudly say that I have graduated to a size small dilator and am continuing to make progress. I am extremely fortunate to be working with an excellent physical therapist and a radiation oncologist that I have great respect for. My PT had never actually worked with a patient with anal cancer and primarily worked with those from the OB/GYN department. My situation was different from any that she had encounter and she has gone out of her way to improvise treatment. For example, when she first started just touching the tissue was extremely painful so she had to use a pediatric cathater(sp?) to apply lidocaine. The traditional "balloon" dilator that they use was out of the question so when the time came she used an anal dilator. Another thing that I think is helping is something my rad onc perscribed to increase circulation in that area. I have been very slow healing and developed radiation cellulitis so he perscribed Trental. It is usually give to increase circulation in the legs, but between this and the premarin, I think it is helping.

On a side note...I had an appt with my reg gyn dr today. She tried to do an exam, resorted to a pediatric speculum but she could not do a thorough exam. She thought she was seeing a hole and is concerned with it being a tear to the bowels so I will have an exam under anesthesia, possible for this Friday or maybe next week for a further check. The good news is that she is pleased with the "depth" and feels that that is as good as normal! YEAH! Now to work on the width. I also saw my med onc this week and all is fine! Next week will be back to the rad onc for my regular two month anoscope! Always something to look forward to.

I guess what I am trying to say is the progress is being made and that is a good sign that I will choose to focus on. As a control freak this whole experience has been a HUGE learning curve for me. Guess what I had NO control over what my body was doing to me or the treatment or the time it is taking to heal. I have had to learn patience with myself and allow time for healing. Hang in there, my hope is that you will continue on your road of healing.

Phoebesnow
Posts: 451
Joined: Apr 2011

Congratulations on your progress. Thank you for the info. I think this thread is really serving our community.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Thank you all for your input. Very helpful to us rectal cancer survivors too.

renztwiddyd442
Posts: 1
Joined: Feb 2012

Hi, i am very sorry to hear about that. But you have to believe yourself. Life is going on. - heart disease statistics | blood pressure medication | high blood pressure

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