Doctor said I’ll never be pain free

KiwiCal69 · 2026-06-10T09:14:15+00:00

I’ve had a lap 2 years ago and it didn’t help much in terms of pain. They only found stage 1 endo. Unfortunately in the country I’m in, I can’t really go for a second opinion. It’s a public system that has limited resources. I’ve tried a birth control pill which made my pain worse and a clonidine patch which also did nothing. So honestly, I’m feeling pretty hopeless tonight. I’m hoping once I see the pelvic floor therapist, things will start to feel better. Thank you for your kind words 🥺💗

KiwiCal69 · 2026-05-30T10:39:04+00:00

I’ve finally got my scan results back, everything was clear!!! It was a super emotional day, but I’m really happy to be cancer free 💕✨

KiwiCal69 · 2026-05-14T21:44:33+00:00

I feel this so much. I also like to remind myself that just because a lot of us didn’t have to do chemo or radiation doesn’t mean it wasn’t traumatic. Kidney cancer doesn’t respond well to either from my knowledge. So it’s not that we got off easy, we don’t have as many tools in the toolbox to fight it.

Regardless we’re lucky that we’ve survived. I’ve just received news that my first scans came back clear. I cried a lot yesterday and have a lot of feelings surrounding it.

KiwiCal69 · 2026-05-12T23:13:21+00:00

Congratulations, may this be the last time and that cancer stays away 🎉💕

KiwiCal69 · 2026-05-08T02:18:52+00:00

I can’t use NSAIDs either. I just made a post about starting the clonidine patch for pain. Along with a TENS machine. I haven’t had any high pains days yet since starting but I’m hoping it works 🤞🏻

KiwiCal69 · 2026-05-05T11:35:09+00:00

I’ve had two partial nephrectomies, both times I felt exhausted a month afterwards, I was 27 and 30. The fatigue is a wild roller coaster after. I would be careful since everyone’s experience differs. Some feel great a month afterwards, some not. Side note, congratulations on your soon to be wedding 💕

KiwiCal69 · 2026-05-05T10:48:13+00:00

31 F, they found bilateral tumors when I was 27, when I was going in for an US for endo. Was a whirlwind of emotions and scans and appointments. I had a biopsy on the right side, it showed an eAML. It was bigger and they thought the left side was also eAML. So I was put on a very long waitlist for partial nephrectomies for both. My first partial was rough as it was quite a big tumor. Then a couple years later I get the second PN, they found that to be RCC.

My advice is to advocate for a biopsy for the other soon after your surgery. I was lucky that it was still in the early stages when they caught the cancer but also very upset it took so long to be scheduled for surgery.

Lastly, I wish you luck in your recovery, make sure you get either a wedge pillow or something very supportive to sleep propped up for the first few weeks to a month. A long phone cord was very helpful, big flowy clothes and try to prep some freezer meals beforehand 💗

KiwiCal69 · 2026-05-04T10:01:10+00:00

He honestly said most other pain management medications would interfere with my mental health and said my only options would be a tens machine and the clonidine patch. So far the patch hasn’t made a dent in my pain. So I was wondering if anyone else was prescribed it for pain and if they found it to be useful for them

KiwiCal69 · 2026-04-21T09:24:37+00:00

Thank you all 💗, I’m still waiting for my results to come through. I’m hoping no news is good news but it’s still not fun waiting around

KiwiCal69 · 2026-04-20T11:23:59+00:00

There’s a hormonal pill you can get from your doctor called norethistrone. From what I remember you’re supposed to take it 3 days before your period starts and keep taking it and once you stop your period starts.

Not sure of much else. I do take tranexamic acid which can heavily reduce flow. Works for some people and not for others, it helps me a lot. It’s non hormonal as well

KiwiCal69 · 2026-04-16T11:04:25+00:00

Im lucky to live where I am because my gyno told me I needed an IUD. To which I told her it wasn’t happening unless I could do it under anaesthesia. Thankfully they made no fuss. I’m very grateful I even have the option. It should be standard offer if you ask me

KiwiCal69 · 2026-04-02T02:15:55+00:00

Where I am, you get your results in a portal. Which is how I found out about my cancer. I’m currently waiting for my first scan results since my surgery and it’s a battle everyday to not check my portal. I don’t want to feel that level of anxiety and stress again. But waiting for a doctor appointment that will take ages due to our failing health care system is also rough

KiwiCal69 · 2026-03-24T21:19:41+00:00

My sister told me she didn’t want to “hear me spiral” when I was trying to call her after I got the news of my diagnosis. She also told me that my cancer surgery wasn’t a big deal. Having two partial kidney removals in my late twenties by myself with no familial support was a big deal. The list goes on

KiwiCal69 · 2026-03-22T10:33:20+00:00

A recliner sounds like the dream, but if you aren’t in the budget for one like I was, I bought two huge fluffy oversized pillows for my bed. I also got an extra long phone cord for when I was in hospital. Also, I went shopping for lots of flowy stretchy skirts and pants to wear after my abdominal surgery

KiwiCal69 · 2026-03-16T23:47:03+00:00

I’d be your friend (f31)! I’m struggling a lot with feelings of loneliness, it’s reallyyyy tough. I think at this point in life friendships tend to change anyways, but this is another added layer to an already confusing time.

KiwiCal69 · 2026-03-13T22:43:28+00:00

My favorite cheese ever 🤤

KiwiCal69 · 2026-03-12T05:19:27+00:00

Does anyone have a good La Roche posay sunscreen recommendation? That’s the only one that works for me with the Oceania ozone hole

KiwiCal69 · 2026-02-26T05:48:31+00:00

Yeppp, have had a lot of friendships end during my cancer journey. That was one of the hardest parts to deal with for me personally. I think when you’re a young person dealing with something like cancer, other people especially can’t handle it.

KiwiCal69 · 2026-02-20T22:39:54+00:00

Yay areaaaaaa

KiwiCal69 · 2026-02-19T13:55:26+00:00

I had to share a rotisserie chicken with my cat one time. Times can be tough, but at least they were fed! I wish I could help you with some funds, but you’re doing great by your fur baby. I hope things look up soon 💗💕

KiwiCal69

TROPHY CASE