Don't get me started on this whole RAD ONC female denial train. I could go on forever.
(Many thanks to weisssoccermom for bringing this up here so I could ask my RAD ONC about it last year.)
First, and especially if you have pain, I really liked my initial dilator - recommended by my pelvic floor specialist. Soft silicone. You keep it in the fridge and it's cold and feels nice on the inflamed tissue. Self-lubricating. Pricey, as it only "lasts" 6-8 weeks. Also, it was graduated - which is good if you have to start small, but I had no pain, so I wanted one that dilated all the way up. (It was designed by a husband of a patient.)
https://www.cmtmedical.com/product/cool ... arter-kit/I also read somewhere that the dilator should be rigid/harder in order to help with dilation. So, after making a big deal out of it (it was never offered to me initially) with my RAD ONC office (*more on that later), I received a (FREE!) pack of hard dilators (Syracuse Medical) that come in graduated sizes.
But I am seeing a pelvic floor specialist and she said I should get a curved one - as this shape reflects more accurately what happens during intercourse. I have a link to a website for that - but I have to find it.
www.tantusinc.com ("Silk" product) I still need to order that one! (Thanks for the reminder!)
One thing that I am experiencing now - 10-12 weeks out from radiaion - is the first UTI of my life. I suspect (and my pelvic floor person agrees) that my urethra has stenosis, which is causing the problems. I'm on antibiotics. We will see if the drugs help, if it comes back, etc. etc. I hope it doesn't, but if it does, I'm not sure what I will do. My PCP said I'll need to see a urologist. It wakes me at night and I have to pee constantly. Not as much pain now as initially - but WTH?
Based on this, I think the stenosis must be at it's peak now. And I read somewhere that we patients need to dilate (or have sex) for our lifetimes as the tissues will always want to shrink.
MY RAD ONC OFFICE DENIES THAT THE UTI IS - IN ANY WAY - RELATED TO RADIATION. The (male) nurse said "radiation side effects dissipate 2 weeks after radiation ends." He actually sent this statement to me twice when I pushed back. (Then why are we allowing radiation to continue to work on my tumor? Hmmmm?) I also have achey hips and legs, which they also deny has any relation. I don't know what's worse - the achiness or the UTI.
*The only reason I was able to get the Syracuse dilators was that they had a female PA rotating through and she was very open to hearing my issues. She agreed that all female patients receiving pelvic radiation should at least get INFORMED (a handout, perhaps) about the possible side effects to their pelvic parts. They should be offered dilators without knowing to ask. Such dilators should be covered under insurance. Patients should be referred to pelvic floor specialists or special GYN. She also agreed that if males were treated this way ("Don't worry, your penis may not work anymore and it may hurt - but maybe not. Whatever.") that a great fuss would be made.
Personally, I wish I could see a GYN ONC to discuss this with as they may have better ideas about managing the side effects. When I went to Cleveland for a second opinion, the radiation oncologist there was a young female and she IMMEDIATELY brought up vaginal stenosis (whereas my male providers in my city did not). I had to come home and bring it up with them and then listen to them shrug it off - like yeah, maybe. My RAD ONC and my ONC are not open to allowing me to see a GYN ONC. (My Onc nurse went so far as to say, "You are older since you were diagnosed. Aches are common when you are getting older." ARG!)
Anyway, these issues are REAL. Unfort., so is the RAD ONC attitude towards female patients.
Again, thanks to the women here (weisssoccermom and others!) who sound the alarm for the rest of us just starting this journey.