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

I completed treatment back in 2008. I didn't find out about the dialators until afterwards. In 2009 I had surgery to open up my virgina and that was because my gyno couldn't do a pap. But being single I put sex on the back burner. Now I wish I had taken better care. No sex for 8 years and having a difficult time dating. Men don't understand at all. I pray there's a light at the end of the tunnel. But I don't have health insurance so what can I do? 

Hello.

I know these posts are old, but I was so THANKFUL for them!  I have stage 4 cancer and have been NED for almost a year:) I had Robotic Abdominoperineal Resection (APR) & Posterior Vaginectomy done in 2017. My lower intestines removed, bottom sewn up because of a tumor, along with the wall between my rectum and vagina removed & a new wall formed by sewing those sides together since cancer was growing there too. While recovering my surgen told me I was lucky and people in Hollywood pay to have this procedure done, not that I was having it for FREE! or willingly!!!  Going through months of radiation, chemo and seeing many differnt doctors not ONE ever said anything of my vagina getting smaller. I knew it was going to be alittle smaller with the removal of the section between my rectum and vagina, but not as small as it ended up to be. Here I thought something was wrong with me and my husband can't understand why sex hurts. I think he was secretly looking forward to the thought I was a "born again virgin"...I was not. My surgen did say sex was okay after some healing time. I still have an opening, it's just not big enough for any action. Is it too late to use the cream and dialators? I had my surgery 2 1/2 years ago. When we have tried, I've gotten a VERY little rip that was painful for a few days and that was just putting the tip in!!! He asked me in frustration, if I miss sex. That made me feel so sad for both of us. YES! I miss my old body, pooping from my butt hole, not feeling sick. I miss when my hands and feet didn't tingle like they are asleep 24/7. I miss the 2 1/2 years where my life stopped and cancer took over. OKAY, I'm spiraling:) If anyone has tried the cream and/or dialators after some time has past and they have worked, PLEASE post. I don't want to start something I can't finish. I guess the good news is I can still have orgasms:) I don't want to make my husband sound like a sex hound...OKAY, maybe a sex puppy, but we were not expecting this. I know this is embarrassing to talk about, and I'm sure I'm not the only one out there that has been clueless on the topic, but THANK YOU LADIES for posting! I don't feel so alone or I'm not trying hard enough.

Kristine

StillDancing said:

My Cupcake

Hello.

I know these posts are old, but I was so THANKFUL for them!  I have stage 4 cancer and have been NED for almost a year:) I had Robotic Abdominoperineal Resection (APR) & Posterior Vaginectomy done in 2017. My lower intestines removed, bottom sewn up because of a tumor, along with the wall between my rectum and vagina removed & a new wall formed by sewing those sides together since cancer was growing there too. While recovering my surgen told me I was lucky and people in Hollywood pay to have this procedure done, not that I was having it for FREE! or willingly!!!  Going through months of radiation, chemo and seeing many differnt doctors not ONE ever said anything of my vagina getting smaller. I knew it was going to be alittle smaller with the removal of the section between my rectum and vagina, but not as small as it ended up to be. Here I thought something was wrong with me and my husband can't understand why sex hurts. I think he was secretly looking forward to the thought I was a "born again virgin"...I was not. My surgen did say sex was okay after some healing time. I still have an opening, it's just not big enough for any action. Is it too late to use the cream and dialators? I had my surgery 2 1/2 years ago. When we have tried, I've gotten a VERY little rip that was painful for a few days and that was just putting the tip in!!! He asked me in frustration, if I miss sex. That made me feel so sad for both of us. YES! I miss my old body, pooping from my butt hole, not feeling sick. I miss when my hands and feet didn't tingle like they are asleep 24/7. I miss the 2 1/2 years where my life stopped and cancer took over. OKAY, I'm spiraling:) If anyone has tried the cream and/or dialators after some time has past and they have worked, PLEASE post. I don't want to start something I can't finish. I guess the good news is I can still have orgasms:) I don't want to make my husband sound like a sex hound...OKAY, maybe a sex puppy, but we were not expecting this. I know this is embarrassing to talk about, and I'm sure I'm not the only one out there that has been clueless on the topic, but THANK YOU LADIES for posting! I don't feel so alone or I'm not trying hard enough.

Kristine

I don't know if it will work or not at this point, but soul source has dialators, that you can start from the smallest one.  Then see if you can make any progress.  

If cost is not a big factor, I highly recommend this one, but I got it through my doctor for free.  https://www.millimedical.com/purchase/

SOOOO WRONG!!!! MY STORY AS WELL!!!!!!!!!!!!!!!!!!!!! I am 55 yrs old, diagnosed with HPV related A Cancer~T3b, N1, M0 April 9, 2021, had 5fu and 30 doses of radiation therapy. Post pet scan September 2021 no evidence of disease however cancer will always lurk in the body just pray it doesn’t resurface before I die:(( It is criminal that this severe vaginal stenosis rendering most of non functioning sexually doesn’t have immediate care incorporated before, during and after treatment! Not only feeling less than a women that my husband deserves to have after 28 years of marriage (sex life nonexistent) ~routine paps (especially to rule out hpv related cervical cancer), or evidence of abnormal bleeding or ruling out of fistulas must be examined and now cannot be! With the vagina closed imagine what could be missed! No one is owning this severe side effect! Not the HEME/ONC or Radiation ONC. Luckily I have a pelvic floor physical therapist working with me on vaginal dilators and your Radiation clinic should provide you some dilators as well.The stigma with Anal cancer now Vaginal closure, it all can leave you feeling less than. I refuse to accept these changes in a negative light (contrary to my anger just posted initially) I am proactive with all my care. I feel a responsibility to post this and want to be an advocate for others who walk behind us. I want to go to the top of the medical board and plead with practitioners to incorporate this in the plan of care. They are so focused on just killing the tumor it plows right though our residual needs as a woman! No one should go through this without proper support groups and resources. What can we do collaboratively? I don’t want legal repercussions just positive change! Hugs love and light to you all. We have been through hell and back.My name is Pam feel free to message me. Todays date 1/31/22

I have posted in the past and want to reiterate the turmoil us women are left with. My dilators have helped tremendously (now NED~ and 8 months post treatment) and now I can have pelvic exams with full view of cervix with a pediatric speculum however my husband still cannot “enter” if you will as the opening is still too small. He claims he’s ok with it but it’s leaving me feeling less than desirable. I don’t even know what the surgeries are that widen the opening. Can you please let me know though I’m not convinced it’s even for me.

That is the most we can hope for! Lean on us! I found it life saving!

Hello,

I had treatment in 2011. The radiologist assistant gave me an acrylic size medium dilator with no instructions and a sense of embarrassment. I had read in the literature I was given at the time of treatment that I should use a dilator but again no info as to how to make this work with all the pain I was experiencing due to the burning and stenosis. I not only could not fit the medium dilator into my vagina, I was unsure what was safe to use as a lubricant. Everything I tried from the local stores was as effective as water. I did ask the radiologist assistant for a smaller dilator, which she provided. That was still painful so I didn’t use it often, which made it worse when I did use it.

I suffered with this until in 2017 I got a new gynecologist who sent me to pelvic physical therapy. That was a life-saver! I learned how to care better for my skin, got the best lubricant (Slippery Stuff is the best), and learned how to do Kegel exercises. I also found silicone dilators of different sizes (Intimate Rose has sets) that helped me to start where I was and move up when I could after regular use. I can now have PAP smears again and no longer bleed (though spotting sometimes occurs after I use the dilator).

I agree with everyone who said this should be part of our treatment plan from day one. I loved my doctors and nurses as they very definitely cared about me and took good care of me in other ways, but this aftercare was not on the radar for any of them. It is a serious flaw that needs to be changed.

Good luck to all of you still suffering to advocate for yourselves in getting the pelvic physical therapy and tools that help you. Thank you to the Cancer Survivor Network for giving us this place to share what works since the treatment plans don’t yet include aftercare.

I was just diagnosed with rectal cancer after my first colonoscopy and am in my first round of chemotherapy. When I met with the radiation oncologist to go over the next step following chemotherapy, I asked them about vaginal health during radiation treatment. While I have a very progressive radiation oncologist, I think he still did not recognize the possible problems for women, other than what is in the literature. I am going into menopause and had previously been diagnosed with vaginismus. That diagnosis took many years to get as most people (doctors) dismissed the pain and extreme discomfort that I felt. I had gone through physical therapy for pelvic floor and the use of silicone based dilators. It is a practice and it is painful and partially a mental process as much as physical. I have been in contact with my gynecologist to try and come up with a plan to coincide with whatever may be occurring During my upcoming radiation treatment, to make sure that my full person is taken care of. I don’t know if this helps you at all, but it took time, patience and getting over embarrassment and some self doubt, to take care of my body. I think that vaginismus is a symptom of what you are going through as well - in addition to any scar tissue and the stenosis. I may think completely differently than this once I go through radiation treatment, but getting to the largest dialator was not my goal - pain relief was. I have never been able to get to a point where I could withstand a pelvic exam without being knocked out. Prior to my cancer diagnosis I asked my gynecologist to see if we could just do a day surgery and she could do a Pap smear and check everything else out while I was under Conscious sedation/some anesthesia. She was able to remove multiple polyps that have been causing issues, and do necessary tests that gave me peace of mind. I hate the thought of doing this every time, but that is where I am at right now. I have to accept that. I don’t know if you have an understanding gynecologist who might be able to do such things for you, or if the scar tissue and other issues are too dangerous. But I wish you the very very best, strength when you need it most, patience with your body, and conviction that you can know what your body needs.