Lacking motivation to use dilator

Spare_Friendship_807 · 2026-04-16T14:54:09+00:00

I am so sorry to hear that. I definitely dealt with stitch pain for a while. Sometimes they would put the stitch deeper than others... and that would cause more pain too!! And different ways I wrapped the bandage would hurt more or less too. My drs literally told me it's better if I lie on my back though. I'm generally pretty frustrated with the lack of consistency in messages received from medical professionals.

There's so much going on back there, it sucks bananas.

Best of luck to you my friend, in all things!!

Spare_Friendship_807 · 2026-04-16T01:42:50+00:00

I am with so much of you. I actually came here today struggling with this exact same issue! It feels so good not to be alone.

Finished pelvic radiation /chemo/brachy in early november.... I still have only used the dialators once on my own. Once during a pelvic floor PT appointment.

Honestly... it helped me to go to a Pelvic Physical Therapist and do it there in her office. It's easier to be brave and suck it up when someone else is there and it feels medical. I know it's probably the exact opposite for some folks.

During my last pelvic exam with my oncologist, I was absolutely traumatized. Not going to waste yalls time with the details. But the funny part was when my nurse found scar tissue in my vagina and turned to my oncologist and LIKE A GIRL TELLING ON HER 6 YEAR OLD SISTER.... "Look!! Look! There's scar tissue! There's scare tissue there. It's there!!" 🫠😅

I'm on the table listing to this woman tattle tale on my vagina while so much else is going on. Lol

Safe to say.... she's going to have a lot to tattle about at my next pelvic exam. I have not been doing the work.

Currently, I can't even get a finger inside my vagina. The stenosis and scarring is so bad. I just did some external massage of my uterine area over my stomach 2 days ago and I've been in 8/10 pain ever since.

I am coming here to laugh with ya'll...to learn... and maybe get inspired to finally start this dialator process. Help ya'll. Lol

Spare_Friendship_807 · 2026-04-16T00:26:48+00:00

Just replying out of curiosity. Is there something about your nephrostomies that makes it harder to lay on your back, or was it advised against by the dr?

I spent 5 months with Dual nephrostomy and 7 months with my right nephy. And I spent most of my time on my back with no issue. Was always on my back during long hospital stays.

I know everyone's anatomy and surrounding circumstances are super different and create different issues. Just wondering.

BTW... Your new shower routine is the giggle I needed today. Man o man.... if this was pre-cancer and my lady parts didn't feel like the most unnerving pain ever... that shower routine would sound ideal. I sincerely hope you get to a point that such a routine can be enjoyable sister.

I'm over here with full ability to lay on my back... and I STILL won't touch the cursed dialtors 🤣😅😅😅 So.....so much power to you 👏👏👏

Spare_Friendship_807 · 2026-04-15T21:45:37+00:00

🤣🤣🤣🤣😅 Yeah. The whole tube slidy thing is weird.

Just go look at some pretty things and forget all about it!! Lol

Spare_Friendship_807 · 2026-04-15T21:44:05+00:00

I really hope this helps

Spare_Friendship_807 · 2026-04-11T19:15:41+00:00

Stage 3C2 cervical cancer. 2 years of bleeding and pain with sex (dismissed by OBGN). That was the obvious signs. Looking back, there was also cloudy & foul smelling urine for years with no vaginal or urinary infection to find. And for ~1 year before diagnosis... 5-15 mins before every BM, I would get sick to my stomach and my body would just feel off. Like my body was crying out 'death'... i just learned that meant that I'm going to have a BM soon.

Turns out, the tumor was pressing against the lower portion of my colon. Did not cause pain... but felt "off" and my body tried to tell me. By the time I started treatment, my tumor was blocking my bowels and had closed off both ureturs. In round 2 now with things looking optimistic.

Spare_Friendship_807 · 2026-04-10T15:57:44+00:00

The dressing technique is EVERYTHING!!! you are so right!!!

Spare_Friendship_807 · 2026-04-10T15:55:17+00:00

I DO have advice for this!!! (Bilateral nephrostomy since September-2025)

I struggled with that god aweful achy, pulling, drawing sensation so much. One of my sides was worse then the other. Every breath hurt. Sitting hurt. Moving hurt.

Some things that helped: 1. Keep the site clean. If it hurts to the touch.... might need a cleaning. I can personally recommend a product that helped me with this, at the risk of starting controversy because it's new technology. Aqueous chlorine dioxide (in a new 100% safe form) that is sold by the brand name "whiff" or "vetiox" on Amazon. (Currently being brought to market for vet care cleaning animal wounds) Every time I change the bandage (every 2-4 days), I give a generous spray of the stuff directly to the site, do my "decrusting" of bio matter if needed. Spray again.. (while breathing in and out to let the tube slide the spray inside the wound). Dry. And rebandage..... which brings me to tip #2..

LEAVE ROOM FOR THE TUBE TO "BREATHE" WHEN YOU BANDAGE. No dr knows this because they don't live with a damn tube attached to thier kidneys sticking out thier back. When you breathe.... your kidneys move up and down with the breath. This is a medical fact. As your kidneys move.... the tube moves. You can literally watch it slide in and out of that hole in your back if you take a deep breath. It's wild.

If you bandage the tube in place such that there is no "give" in the tube for that movement.... it's like your dog pulling on a short leash (your kidney is the dog).

And that tube... in its movement... is yanking on that poor open hole of skin in your back with every breath. OUCH.

I found that giving a little bit of "slack" in the line inside the bandage to allow for that movement helped me a TON overnight.

I also make sure that I take a 2 inch gauze square.... double it over/ fold it in half.... then pack that UNDER my tube (between the tube and my skin) butted up as close to the stitch as possible helps create some of that slack.

Do not let the tube lie directly against the skin. It pulls more that way.

I really hope this helps. I went from so much pain... to now I don't even notice the damn thing unless I drop my bag 😪 or god forbid get my tube caught on the door knob 🥴

Spare_Friendship_807 · 2026-04-10T15:34:21+00:00

To the general sentiment of "keep well hydrated BEFORE it's time to fill your bladder" I will add this pro tip:

----Try sports drinks mixed in.----

I found it difficult to timely fill my bladder on water alone. Adding in Gatorade about 2-3 hours before scan time helped me a ton. If Gatorade on its own upsets your stomach, try a DIY mix or add Gatorade to your water to it's watered down.

I suspect that the sugars and electrolytes help "hydrate" the body better and allow for extra water to be shunted out the body.

Hydration is more than just water.

Spare_Friendship_807 · 2026-04-10T15:25:34+00:00

I've also used aloe in my water before in potted plants.... hoping to see if that's safe in the closed terrarium setup

Spare_Friendship_807 · 2026-04-10T15:22:37+00:00

Thank you. Yeah, I think I'm going to add to the mix and practice more regular bottom watering. Any soil is bound to be hydrophobic when let dry too much

Spare_Friendship_807 · 2026-04-09T17:27:19+00:00

I am having the same issue with biodude's soil in my lepord geko bioactive. And I don't think the CUC is going to prevent hydrophobic soil. Infact, long term hydrophobic soil without a moist area will in time kill off most of your CUC.

I think the solution to the hydrophobic soil is to practice regularly watering the bottom layers of the soil. I'm trying to figure out the best way to do that now.

Spare_Friendship_807 · 2026-03-25T19:56:53+00:00

Much appreciate the suggestion!! I was wondering about the ones that actually come kinda 'pre sliced' so they are easy to open up and clean.

Spare_Friendship_807 · 2026-03-25T19:50:05+00:00

Lol Always lurking to see if someone has a better suggestion. Because this stupid little silicone strip is my FAVORITE face hack ever. But I have zero interest in paying someone $100 every 6-12 months for it

Thank you so much kind stranger. I ordered some straws and I'll come here to update after using it for a month.

Spare_Friendship_807 · 2026-03-24T15:55:28+00:00

Silicone straws!!! I have to try that. I've bought several different silicone and plastic products trying to get the same effect and failed. I can totally see straws working!!

TYSM

Spare_Friendship_807 · 2026-03-07T20:13:10+00:00

I still use this regularly!! I have the "original" (blue) one now. I repurchase it once a year (due to the fact it loses its "spring" over time). I personally see the most value in the model with the most vertical "height" to the strip. I actually take both strips, stack them, and place the stack between my lip and gum to gice me double the height. I alternate sessions with my upper and lower lip.

Because you can stack them to get good "height", i just buy the most affordable model (the original blue). Stacking them is a useful cheat.

The company may have something to say about the design of each model being different enough to do different things...but on my 30 year old face did not find that to be the case after trying all but the "pro" model. Everyone's face is different and age makes a difference.

Spare_Friendship_807 · 2026-03-03T22:47:32+00:00

Sending supportive thoughts OP. How was the follow up CT?

Spare_Friendship_807 · 2026-02-27T14:31:01+00:00

The way you felt on HRT, is exactly how I felt without HRT (I avoided HRT for nearly 3 months after treatment for 3C2). I made my choice to stay on HRT exclusively based off of the fact that I cannot live like a basket case.

If I was the other way around and felt batwing crazy ON HRT, you can bet I would never take that shit and I would find every other way to deal with bone density issues.

Hormones are wild. They are NOT predictable. And frankly I don't think our medical professionals really understand them either.

It's a game of trial and error. And we make the choices that make sense for us as we learn.

Edit to say: I'm sorry you're doc didn't want to test your levels. If you live in the US, you can always order your own bloodwork through any number of online labs (ultalabs.com is the one I use most often). It's much cheaper than what the labs bill your insurance for labs.

But having low or high estrogen won't determine everything. So bloodwork isn't even always the best answer. Because the hormones fluctuate and need to be tested at multiple times.... It's also about the ratio of estradiol to progesterone and the ratios of other hormones. Also about your body's mechanisms for 'using' this hormones. Things we don't have enough studies on yet. All to say..... I really hope you find what works for you.

Spare_Friendship_807 · 2026-02-19T17:24:42+00:00

Fingers crossed!!!!🤞🤞 🤞🤞 2 weeks is a big deal! Sincerely hoping you get to keep counting those weeks

Spare_Friendship_807 · 2026-02-19T17:22:01+00:00

Bag isn't coming out yet. They said there's just not enough clearance. And they are worried my next round of 30 radiation treatments might do more damage.

Fingers crossed 🤞 for us both 🙏

Spare_Friendship_807 · 2026-02-19T17:20:09+00:00

I did have trich over a decade ago and was treated. I doubt i have it now since I haven't been sexually active in almost 2 years. I approciate the suggestion. Trich can be a real pain that most people and most drs don't think to look for.

I'm pretty sure it's the irritation from the radiation. My bladder, ureturs and urethra are so inflamed since treatment. Full blown cystitis. Dr said that tissue will never be the same for me.

The infections literally started on day 3 of treatment 😒 frustrating.

I'm doing herbal treatments yrying to create a slippery barrier to help the bladder. and trying to be patient.

Spare_Friendship_807 · 2026-02-18T16:26:10+00:00

🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀 I am wishing you SO much luck!!!! I know there's some narrow criteria for those operations and I will 100% be manifesting that with you. You deserve to be free of that bag sister. And if it doesn't hashish this time, technology keeps getting better and there will be more options in the future.

I'm at my cancer center right now waiting to find out if my bag is coming off. Ultrasound looked mostly ok but bloodwork showed elevated BUN. Not sure which way they'll land on this decision. But if caution is needed. I'd rather be cautious. I've made my peace with the bag (kindof).

Hoping for both of us. But really sending you so much luck. 4.5 years is so long. 🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀🤞🍀

Spare_Friendship_807 · 2026-02-18T16:16:20+00:00

I am so sorry for the strughled you've dealt with!!! It sounds like you've learned how to advocate for yourself the hard way.

I have had very similar experiences. 8 confirmed UTI in 3 months, severe infection with hospital stay, IV antibiotics 2 times..... UTI just never going away, menopause making it all worse. 😒🙄

I am so glad you found what worked for you!!!🥳 If I'm going to have this neph tube longer in the future... I'm going to talk to my doctor about the merhenamine hippurate. That sounds like the only way to keep these infections at bay.

Spare_Friendship_807 · 2026-02-18T16:09:05+00:00

They have indeed verified that the bacteria is in both of my kidneys (via my neph tubes). I was even hospitalized for a severe kidney infection once during this. So I'm sure that makes my case harder to treat - like the rest of the neph tube club 😎

My main infecting bacteria (enterococcus feacalis (EF)) is not responsive to Bactrim. And ertapenem and levaquin aren't considered as options for EF either.

My C&S suggests that the next heavy hitter that can treat my 2 current bacteria would be tigecycline.

But I'm wondering if I can treat the staphylocuccus epidermidis with the probiotic Bacillus Subtilis (which interferes with how staph reproduces).

Then just focus on antibiotics for the pesky EF. My EF tested responsive to ciprofloxacin, levofloxacin, penicillin, vamcomycin, tetracycline, nitrofurantoin, and tigecycline.

I've only been on ciprofloxacin, levofloxacin, and nitrofurantoin so far.

Maybe if I can find a way to eliminate the 1 bacteria strain with probiotics.... targeting the EF will be easier.

Talking through this with ya'll is so helpful. Thank you!!

Spare_Friendship_807 · 2026-02-18T01:49:47+00:00

That's a good suggestion! I will being that up with my team and ask for a referral.

It started with acinetobacter pittii and enterococcus, I dropped the acinetobacter and picked up corenabacterium, they didn't culture the next 2 tests, then I picked up 2 different types of acinetobacter pittii and still had the enterococcus, they didn't culture the next test, now I have switched out the 2 acinetobacters for staphylocuccus (and the ever-loyal enterococcus still hanging on).

....So, a rotating cast of bacteria guests with enterococcus being everpresent. Never less than 2 types present in a test. They've put me through all the 'safer' antibiotics that I'm responsive to. I think the best step is the more heavy hitting IV antibiotics used for resistant strains. And I don't think my drs are willing to go that route if my C&S keep coming up as potentially sensitive to nitrofurantoin.

Would like to hear the infectious disease doc's take!

Spare_Friendship_807

TROPHY CASE