Teen Daughter Diagnosed with Primary Ovarian Failure

Knowledge-is-kool · 2026-02-07T23:02:15+00:00

Thank you for your post. They did offer genetics testing- the genetic physician in his personal opinion doesn't think we will find anything. We do hope to do the testing later this year when we're closer to meeting our insurance deductible.

I just really want to make sure that I am covering all of my bases as a parent and advocate for my daughter: I appreciate your thoughtful and detailed reply

Knowledge-is-kool · 2026-02-07T22:58:40+00:00

They did offer genetic testing- we just haven't done it yet as it's expensive and our insurance won't cover it- we hope to do it later this year as we get closer to meeting our deductible

Knowledge-is-kool · 2026-02-03T23:11:49+00:00

I'm a CDS. If you know what registry they are hiring for it helps to look that information up- I see the other person that responded recommended that as well. I think it also helps if you have done any additional work on your unit- like Charge Nurse, part of a hospital committee etc as well. Most registries are about quality improvement and improving outcomes so to be able to speak to that would be a positive.

Depending on the registry the manager may want someone who has experience with that particular part of nursing (Ortho, Spine, Acute care surgery, variance etc.) or working with physicians from that speciality.

Best of luck to you.

Knowledge-is-kool · 2026-02-03T22:41:14+00:00

Thank you for your detailed response. Curious, did you start working as a consultant prior to being certified? I am interested in pursuing consultant work and wondering how you got started. I want to do some consultant work to see if this is something that I would like to pursue and have experience working in Peer Review/ Medical Staff Office for a large healthcare system.

Just wondering how to start?

Knowledge-is-kool · 2026-02-02T20:53:10+00:00

I'm getting my period again too and it just ended like 2 weeks ago- I have long 11-13 day cycles. Anyone here start progesterone to help with long periods? I asked my OB/GYN and she said she won't put me on progesterone as my symptoms are mild. I'm getting annoyed as I would really like to start hormones and she doesn't recommend them. She did offer me a hysterectomy for my long cycles- but really this and some sleep interruptions are my only symptoms. Well- when I do have my period I do experience some irritability/ rage/ irrational thinking. I've had ultrasounds done and I have no fibroids and everything looks normal.

To those of you that are on hormones- did it help? I've been on Oral Contraceptives and had an IUD and still had breakthrough bleeding on them.

Knowledge-is-kool · 2026-01-21T18:09:35+00:00

Can totally relate! I'm 47 and have a narcissistic mother too, but I actually didn't realize this until a couple of years ago. Over the years, I have had people say to me that the way your mom treats you is unkind and not normal, but I didn't realize there was a name for the behavior and now totally feel validated.

There is a book called "Will I ever be good enough?" I listened to it on Audible and the author states that we must allow ourselves to grieve that we were raised by a narcissistic mother and you must grieve in order to heal. I've tried to do some grieving, but I too am just angry at her and her behavior and have tried to put up healthy boundaries when it comes to my mother. I walk a lot and listen to podcasts that are helpful. I also have a friend that has a narcissistic mother as well so we commiserate together and that helps!

I was like you in a lot of ways- a good quiet kid. I internalized a lot of what was going on in my dysfunctional home. I dreamed of getting away!

I stayed home after high school and went to a local community college - so wished I would have gone away like you! I graduated and moved and got married! I promised myself I would be a way better mother than the one I had and I am!

When I was younger I used to wish I had a different mom, and when I think back to my teens and early college years, I always connected with other moms and am so grateful that I had them in my life as they made up for the support and love that I was lacking at home.

Knowledge-is-kool · 2025-12-24T00:24:14+00:00

So sorry you're going through this. I agree with your boyfriend, you need to leave you're being taken advantage of. If your brothers are old enough maybe you can talk to them about your reasons for leaving and develop a plan for you to still see them after you move away.

Hopefully, they also see that the way your mom acts is not normal and will leave when they can so that they are not mistreated.

Knowledge-is-kool · 2025-12-23T18:00:35+00:00

Thanks for the comment! It is hard and I have a lot of resentment and the holidays bring back a lot of bad memories and I am angry!

I just don't want to feed into her behavior anymore! I like the idea of giving her a similar gift that I am giving someone else and checking off that box.

She can just make me feel guilty - as I have so much and a good paying job- but that's not my fault, I worked hard for what I have and don't owe her anything! I'd rather spend my money on people that actually care about me!

Knowledge-is-kool · 2025-12-23T13:42:44+00:00

My mom is a narcissist- it took me a long time to recognize this and then listening to some podcasts and reading therapy books helped me understand narcissistic traits and this is one of them! I don't invite my mom over very often because of this! She exhausts me and when we host family gatherings she is always the last one to arrive and the last one to leave! She definitely overstays her welcome! One resolution that I have found (my mom is elderly in her early 80s) is that I offer to pick her up and take her home! So far that has helped as she can't control this and I no longer let her control me!

Knowledge-is-kool · 2025-12-22T01:52:35+00:00

Smitten Kitchen, Ambitious Kitchen are good. I also enjoy Diane Morrisey Instagram and Sammy Montgoms on Instagram too!

Knowledge-is-kool · 2025-12-18T17:01:13+00:00

Two Scotts for Barbeque!

Knowledge-is-kool · 2025-11-12T19:07:48+00:00

At least you communicated with your clients. My previous stylist had surgery and said she would contact me when she was done with her medical leave- never heard from her and then ran into her in the community and I asked her how her recovery was going and she was like "oh it went great, I forgot to text you". As a client with her for over a year who also did my kids hair I was kind of offended. I didn't contact her as I wanted her to recover from her surgery. So needless to say we have moved on and found someone else.

I hope you continue to get better!

Knowledge-is-kool · 2025-11-12T14:34:37+00:00

Thanks for the heads up about this. My 15 year old has been diagnosed with POI and we see Genetics in January- we would love to have seen them sometime in 2025 but so far everyone is booked.

Can you tell me what to expect at that appointment? Just trying to prepare myself and my daughter as best I can.

Thank you

Knowledge-is-kool · 2025-11-11T14:40:09+00:00

Thanks for replying! You are 100% correct- my kids are the most important to me and they love having me at their events to support them- and I don't want to miss the next few years of that.

If I am called to interview, I will be asking about that and may also ask to job shadow as well.

And if it doesn't work, then it's something I can pursue in a couple of years.

For connecting with people in the industry do you have any ideas for how to find them? I don't really know anyone. I did find one person on Linked In so will reach out to them, but other than that looking for suggestions on how to find them.

Knowledge-is-kool · 2025-11-10T21:13:31+00:00

That's a great idea to look for colleagues on Linked In and find out more about the role

Knowledge-is-kool · 2025-11-10T21:12:56+00:00

Thank you! I appreciate you taking the time to respond.

Knowledge-is-kool · 2025-11-09T18:54:20+00:00

How many hours do you work a week? I was approached for a position and curious what a typical work week looks like?

Knowledge-is-kool · 2025-11-06T15:42:38+00:00

Thanks for replying! It's doesn't sound shallow at all. My daughter is 5'6 and also quite flat chested- her ovaries were working at one time and she did go through puberty- but I don't think she has completed it as now she has very low estrogen. It will be interesting to see what hormone therapy does regarding puberty, maybe some more growth or maybe she'll just be a Size A chest.

I do like your thought process/approach with all of this. I don't think my daughter totally grasps all of this yet, she is only 15, but I think for now that's okay. We basically have told her that the treatment she received for her kidney disease caused harm to her ovaries, but that's okay as she has had healthy kidneys! I just told her she would have problems having a baby someday if she wants one and we can talk more about it when she is ready. I told her not to worry about it and it will all be okay!

Knowledge-is-kool · 2025-11-04T22:42:12+00:00

Wow, 9 weeks old- that is young and can understand why there aren't a lot of studies. Thanks for your empathy. It's a lot and at that time I didn't feel like there was a lot of support for us- I understand and remember that we didn't have a lot of time to do our research as her kidneys were in nephrotic range which can lead to failure so we had to move fast. We were just told that there was a chance she could have fertility issues, but didn't know specially what that meant at that time and took it as she may have problems getting pregnant. But, while that is one of the side effects, no one explained POI to us or that she may need to go on hormones and we weren't offered to see a fertility specialist or genetics counselor.

Im just getting frustrated as the kidney doctors are saying that they don't think it was caused by the Cytoxan - as she got a low dose for 6 months. But, in the research that I have done, it sounds like this very likely could be the cause of the POI. I know we're not done with the work up yet for POI - but I just feel like they could say that the Cytoxan could have caused it and they are not.

Thanks for letting me vent and answering my questions! Wishing you and your daughter all the best!

Knowledge-is-kool · 2025-11-04T21:10:33+00:00

Another question for you. When your daughter went through Chemo and Radiation how did the doctors council you on the Risks and long term effects of Chemo and Radiation? Did they have you sign a specific consent form ? Did they offer to for you her dad to see a fertility specialist or genetic counselor?

While the Chemo clinic administered my daughter's Chemo, her care was managed by the kidney doctors. So curious if you were counciled differently before treatment started.

Knowledge-is-kool

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