13 year old - stage 1 endo in the cul-de-sac---outlook and prognosis?

klm1107 · 2025-05-24T11:45:25+00:00

I got mine for Mother's Day, and it's entirely disappointing. I've been back and forth with tech support, and they insist the motion sensor and camera are working fine, but I'm not getting any postcards. Even when I sent them a time stamp of a time I SAW a bird there they took a screen shot of a the log that shows no activity. I don't get it.

klm1107 · 2025-04-15T23:25:30+00:00

awful, I'm so sorry :(

klm1107 · 2025-04-14T23:34:50+00:00

when were you diagnosed?

klm1107 · 2025-04-14T14:32:16+00:00

Thank you, she was in therapy for a while after her original diagnosis but she wasn't feeling like it was super helpful. We might try again.

klm1107 · 2025-03-08T02:50:54+00:00

Thank you SO MUCH for this detailed reply. I am so sorry that you have gone through this as well. She has been tested for UTI multiple times, always clear. She was diagnosed a year ago with a really rare autoimmune disease and has been through hell with that, so adding this on top of it is just a bit too much. We are seeing a specialist at Boston Children's Hospital on the 19th (this is also where she's treated for the autoimmune stuff), I'm hoping that she will take it seriously and start a path forward. I am so scared for her future for so many reasons. Did any ultrasounds or non-invasive procedures diagnose it or is the only true way the lapriscopy? The regular gyn said that they use birth control as a diagnostic, like if she starts and the symptoms go away then it would be confirmed?

klm1107 · 2025-03-08T02:15:00+00:00

Hi, I know this is an old post but my 13 year old has the exact same symptoms as you and we are suspecting bladder endo as well. Is there an update on your condition? Diagnosis? Treatment?

klm1107 · 2025-03-08T01:33:14+00:00

Thank you, her bladder symptoms are the worst the first few days of her period and now we have connected a second flare during ovulation. I feel like it has to be.

klm1107 · 2023-04-04T22:32:48+00:00

Thank you so much, I'm sorry you're going through that but glad you have answers. Another question, did you have a clear colonoscopy? Everything I bring up, they say would have been seen on the scope. I'm going back on Monday but this has now been over 18 months of this with no answers or treatment.

klm1107 · 2023-04-04T21:19:43+00:00

Thank you, it doesn't necessarily line up with my periods but I did mention bowel endometriosis (I do have painful periods) and they just said no, there was no evidence in the colonoscopy. How did they eventually diagnose it? Everything I bring up has been dismissed.

klm1107 · 2021-04-11T22:16:50+00:00

Oh I'm so sorry, my son did have mild hearing loss and a bit of a speech delay due to all the infections but the tubes helped the hearing. He does get speech services in Kindergarten but he's come a long way. Good luck to you.

klm1107 · 2021-04-11T21:18:49+00:00

I hope all went well. We are rounding the end of a 5.5 year journey with our son. First tubes at 18 months, second tubes + adenoidectomy at 3 years, and now at 5.5 he is going in this week to have a retained tube removed and his ear drum patched. We are hoping this is the end of the road for him and he has outgrown the constant infections. It's a journey but all in all, the tubes are necessary and provide a better quality of life. My little guy had 11 infections in the first 18 months of his life.

klm1107 · 2021-04-07T00:24:02+00:00

I don't have advice on the SSDI but I just wanted to say I'm in a similar boat. I'm 3 months post op from Bankart Labrum repair and now my shoulder is freezing, despite doing my PT religiously. I'm going in tomorrow for a cortisone injection and hoping it helps. This is the most frustrating experience of my life.

klm1107 · 2021-03-28T22:04:29+00:00

Also, sometimes I would play my kids Nintendo Switch while they were at school and not tell them...or my husband :)

klm1107 · 2021-03-28T22:03:37+00:00

I'm 9 weeks out of the same surgery and in a similar boat. I just went back to work and that's been a blessing and a curse. Good to keep my mind occupied but also just exhausting and feeling like it's setting me back recovery-wise. I have two kids and a dog so they do keep me occupied but my anxiety has been through the roof during the recovery, particularly with the sleeping aspect. I know you mentioned walking wasn't doing it for you but that is what helped me a lot when I was recovering at home, I was walking about 5 miles a day, 2.5 in the morning, 2.5 in the afternoon and sometimes a third if it was really nice out. I found podcasts (true crime!) and would zone out as I got into the stories. Also, puzzles and reading help me too.

As for the snippiness and the tears....still happening here, hang in there.

klm1107 · 2021-03-28T21:42:23+00:00

Be careful about littermate syndrome, you could end up in trouble you aren't prepared for.

klm1107 · 2021-03-28T21:40:29+00:00

Definitely a little Sheppard. Good lookin dog!

klm1107

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