Vaginal Dilator and/or Pelvic Floor Muscle Tone rehab Physical Therapy

Hi again mll ,

Regarding the questions you have about dilators, in the UK these are usually provided at the end of treatment, I was sore front & back by my last radiotherapy session & waited until things had settled down before I began using them. 

I’ve never had the need for pelvic floor PT but have been having some physio for my lower back & hips which I think is a mixture of my osteoarthritis & the after effects of the radiotherapy but if this is all I suffer for being cancer free I’ll take it any day. 

Try & take your treatment one day at a time, not everyone suffers the full extent of side effects. I think we’re all really nervous prior to starting treatment, that’s only natural, once you get into the swing of your daily hospital visits you’ll soon relax a bit I’m sure. 

Nicola 

Hello mll

Nicola has already replied, I was wondering how to phrase my answer but she has done a really good job!  I couldn't go near my nether regions with ANYTHING apart from the ointments and dressings far less a dilator as I had very bad sores.  So I concentrated on getting the dressings on and sleeping - lots of it, it was all I could manage in the early days.  I have used the dilator since, with some success, I didn't have all of the vaginal problems some have had and I haven't had any physical therapy.  My skin is very very tender still and I am 11 months out of treatment.  I have accepted that this is my new norm.

It is totally understandable that you are nervous, but please remember you always have the crew here to come back to, even if you just want to have a rant.

Irene xx

Hi mll,

So sorry you have to join this club! I started using vaginal dilators after treatment. It was a least a month later, if not more. I did work with a pelvic floor therapist and highly recommend it. I had severe radiation fibrosis, incontinence (bladder), and urgency issues (poop!) that she helped me with. Since my recurrence, I'm back working with my pelvic floor therapist. She's now working on all my scar tissue and pain I have in my tailbone area as well as some vaginal work. It's been so helpful and I highly recommend it. 

I wish you all the best. You can do this!!! Keeping you in my thoughts and prayers!

Hopie xx

Sorry to hear you have recurrence. Stay strong. May I ask when you started seeing pelvic floor therapist? During treatment or after?

Thanks! I started pelvic floor therapy after treatment. It was around two months after radiation.

I'll be 2 years post treatment at the end of March and I'm still on the smallest one of 3 that the hospital gave me! I have to admit I have a bit of a phobia about using it so don't use it as much as I should. My Oncologist said if I don't my vagina will close so I'm going to have to as I'm unable to get a smear test as yet Xx

The USA is so far behind in informing patients about options. I received NIGRO Protocol. I was not asked whether I wanted a vaginal dilator during radiation, it was forced on me without explanation, I originally took it as part of treatment. Only later did I understand that one MD preferred using dilators while another did not (at MD Andersen Cancer Ctr, Houston, TX); further there was no discussion on types of optional chemo treatments and no explanation of side effect variation between medications - Cisplatin vs Mitomycin in addition to Fluorouracil 5. NIGRO recommends 30 Gy but my MD gave me 55 Gy, just in case......without any explanantion or consent. This was 2013. I now have severe neuropathy in both legs, cannot feel toes, stumble a lot; tissue fibrosis is very severe; vaginal stenosis is so bad that the GYN can only insert one finger, so no sex, and a divorce. Now, ten years later, incontinence has started really fast, loss of sensation of bladder filling, muscles cannot contain urine......chronic fatigue, muscle weakness, lymphedema of legs persist.

I feel that I could have taken some steps and made some decisions to mitigate the adverse effects; I was not informed about mega Vit.C therapy or hyperbaric oxygen or pelvic rehab. I was treated as a lab rat.....let's do this and see what happens.....no discussions. Sounds like UK has a much better patient care and communication atmosphere.   It's been 10 years cancer free but really poor quality of life that could have been prevented in part.

Hi there!

I don’t know if your radiation treatment includes use of the dilator DURING the radiation sessions, as mine did, but my team really thinks this step helps maintain some of the elasticity in the vaginal canal.  I’d get on the radiation table, the tech would hand me a dilator slicked up already, I’d insert it and tape it to myself with medical tape, then lay back for treatment! Weird, huh?!

When I was done with all of my treatments, the team offered to refer me to a gyn who specializes in pelvic floor/radiation recovery, but I have a friend who’s a physical therapist who specializes in pelvic floor, so I just consulted with her.  She made a couple of recommendations for different sized dilators to use after treatment ended, and gave me a schedule of how/when to use them.  I used them very regularly for a few weeks, then I kind of fell off.

Yes, it took a while for sex to feel “safe” again, nevermind fun, but we’re definitely there now (I’m a year out of chemo-radiation)!  Fortunately, I don’t think I have many of the related side effects that some experience after radiation.  Things are a little tighter, but not impossibly so, but the main difference I notice is that I need lubricant now.  I never needed that before treatment, but now I either need a LOT of time and foreplay before, or some help with lubricant, otherwise the tissue tears very easily and I have even had some scant bleeding after.  We know what to do, now.  Take your time, patient and attentive partner, lube, etc…

Best wishes,

Red

Oh, ProfMB , I’m so sorry your experience was so bad and that the effects have lingered so.  Ten years cancer-free is a terrific accomplishment, but it does sound like some things were overlooked regarding long-term quality of life.

I have thought many times through this passage, especially as I’ve heard from those who are years out, how quickly cancer research and treatment moves!  My experience now (in the States, also), seems to be so much more positive than what you experienced.  I’m grateful for the developments and improvements, and again, I’m so sorry that you have had such a tough time!

Hugs,

Red

Thanks for reaching out. Too late to deal with vaginal stenosis that could have been prevented. But many USA MDs, encountered by me, are characterized more by indifference with pt QOL and charging insurance for unnecessary stuff and less with genuine concern for the individual person and critical thinking. Most do not keep up with research and their inbred arrogance prevents them from listening to patients. My symptoms were ignored for 6 years by stupid MDs until the tumour grew so large it could not be ignored any longer. I did not have to go through any chemo or radiation if the MDs respected my "complaints". But I am now an old woman, over 70, and continue to be dismissed as "old woman.......". Even though most of these MDs could not survive the doctoral program I completed at an ivy league school.

These are some factors that continue to explain the poor medical outcomes many receive. So if people do their own research (not google but NIH), and resist being intimidated, or bullied into deifying their MD, look for several second and third opinions, do not take as gospel the first treatment proposal put forth. Informed consent should be just that - informed in detail and writing.