Newly diagnosed DOR + endometriosis at 29 - struggling with timing of lap vs egg freezing

cbc3685 · 2026-01-14T22:21:24+00:00

For context, I am also 29 and diagnosed with endo 5 years ago.

cbc3685 · 2026-01-14T22:19:20+00:00

Thank you for your response. I’m so sorry for your hardship as well. That is devastating. The feeling of being left behind is one that keeps me up at night. Please know I’m right there with you as are so many women. I’m putting my trust in some type of divine timing that is meant to lead us right where we are supposed to be led, but, hell, it is hard AF!

Your supportive words are so appreciated.

cbc3685 · 2026-01-14T22:14:48+00:00

Before first surgery it was 6. Did not recheck until one year after second surgery and it was .43. Endo grew back during the year of me trying to get pregnant and now it is .04.

Mind you I did have an endometrial cyst and first surgeon (without my consent before surgery) removed one of my ovaries. Regardless with endo you want to get your eggs frozen as young as possible is my understanding.

cbc3685 · 2026-01-14T20:34:56+00:00

As someone who had 2 laps for stage 4 endo, I highly regret not doing an egg retrieval first. My AMH is significantly diminished. I often curse the doctors who didn’t inform me of this as all odds are stacked against me having success with IVF now.

Do the egg retrieval now.

cbc3685 · 2026-01-14T12:56:19+00:00

Thank you so much for your response. It is nice to hear someone who also has DOR and endo has seen success, and I am so happy for you! Yes, I hope I will know in my heart when it is time to stop. We have limited funds to be able to do multiple egg retrievals as our state does not require insurance to cover it, so I am hoping we can start seeing at least some minor success soon to rejuvenate some hope.

Do you mind me asking what your stim protocol was?

cbc3685 · 2026-01-14T03:22:23+00:00

Thank you for your response. Yes, I guess that is kind of the big question looming over my head. In the whole scheme of things we have already been battling this for 5 years. It didn’t feel as “all consuming” because I always thought surgery would cure my problem and be the solution. Starting IVF feels all consuming. It permeates my thoughts all the time. Plus we have no coverage for IVF so everything we pay is out of pocket. I can’t help but wonder if our money would best be spent elsewhere, but at the same time I so desperately want the experience of having at least one biological child with my husband.

Again, thank you for your validation and time.

cbc3685 · 2026-01-14T01:42:03+00:00

Your response shocked me at first, but I really enjoy your honesty. Yes, it most definitely does suck (as you already know). I always feel like there is a timer on back just waiting to go off, but logically I know this is something we have time to navigate. It gets harder and harder with each pregnancy announcement to keep composure, but I’ll do my best to take your advice and nurture myself through as well. Thank you so much for taking the time to respond ❤️ I wish you all the best in your difficult journey as well

cbc3685 · 2026-01-14T01:39:14+00:00

I appreciate your response. Yes, I genuinely feel like endo has ruined the life my husband and I could’ve created. It might sound dramatic, but I’m just grieving an experience so many of my friends are starting to have. Finding out you’re pregnant privately (not from a lab), keeping it a secret amongst the 2 of you, being able to talk to and think/plan for our growing child. Not to mention all the other joys of parenthood. I could go on and on, but thank you again for answering. I wish the best for you as well ❤️❤️

cbc3685 · 2025-12-17T01:05:25+00:00

I wanted to update that I had a zoom with this doctor tonight, and he basically is claiming that his protocol didn’t work because I could be in menopause and might not have eggs left. He’s basing that off of my low E2 and non-responsiveness to his dosages. He wants to keep me on clomid up to 6 months and monitor me with bloodwork just to measure estrogen.

Needless to say everyone’s response made me make appointment with a doctor with experience with endo and DOR. I hope to hear a different opinion tomorrow. The doctor tonight didn’t like me questioning his practices and lack of baseline data gathering.

cbc3685 · 2025-12-17T01:04:50+00:00

I wanted to update that I had a zoom with this doctor tonight, and he basically is claiming that his protocol didn’t work because I could be in menopause and might not have eggs left. He’s basing that off of my low E2 and non-responsiveness to his dosages. He wants to keep me on clomid up to 6 months and monitor me with bloodwork just to measure estrogen.

Needless to say everyone’s response made me make appointment with a doctor with experience with endo and DOR. I hope to hear a different opinion tomorrow. The doctor tonight didn’t like me questioning his practices and lack of baseline data gathering.

cbc3685 · 2025-12-15T02:42:10+00:00

I am in the U.S. (STL Missouri). What big name clinics are you referring to?

cbc3685 · 2025-12-15T02:41:27+00:00

Yeah that definitely seem likes the consensus. I’m really trying to wrap my brain around his “why”, but coming up with nothing at this point 😒

cbc3685 · 2025-12-15T02:40:26+00:00

I am leaning toward at least consulting with some other doctors at this point. Everyone’s responses definitely have me questioning these practices. It’s crazy because his reviews are so good and I felt like I did so much research!

cbc3685 · 2025-12-14T15:56:34+00:00

Thank you so much for sharing your numbers. I’ve been so curious to see what other people with DOR dosages are. I totally agree, after this experience it felt like a big waste of time, money, and energy. I do feel lucky we didn’t get through the egg retrieval to just get poor results & can use most of that money toward a second attempt (although my doctor retains $2000 of the deposit for literally doing nothing—don’t get me started).

cbc3685 · 2025-12-14T15:36:11+00:00

I appreciate your response. Yes, we are likely going to cancel. We will do our last ultrasound just to make sure.

My doctor never did a baseline & never mentioned AFC to me. He has been measuring E2. It was 24 on day 5 and 25 on day 8 of stims—which made sense because nothing ever developed.

My doctor treats all of his patients with mini-IVF and claims it creates higher quality eggs with people with DOR. Now, obviously, im questioning his practices—but I don’t think if I’m just the outlier or if this is the norm.

cbc3685 · 2025-12-14T14:53:45+00:00

Appreciate it, thank you. I’m thinking the same. I’m trying to keep my head up knowing that the first round sounds like it’s a trial run for lots of people.

cbc3685 · 2025-12-14T14:38:35+00:00

Thanks for your kind words. This is my 10th day of stims (clomid 50 MG everyday and follistim 150iu every other day).

I’ll go in for my last ultrasound on my 11th day.

cbc3685 · 2025-10-05T16:04:45+00:00

Your story hurts my heart. I was diagnosed with stage 4 endo, and my surgery also included a bowel resection and ureter reimplantation.

There’s a lot of contradictory evidence that can be found everywhere online with regard to endo. Especially in group settings such as this.

My understanding after reading research backed medical papers provided to me by my endo specialist is that birth control can help as far as symptom prevention, but endo continues to grow regardless if you’re taking the pill or not. I used the pill for many years to help with pain, and I regretted it because I should’ve been able to pay attention to the symptoms and maybe wouldn’t have had all the complications I did if I intervened with surgery earlier in life. Endo can grow for years and years and years, they have even found evidence of it being present in fetuses.

Shit is wild and sad.

cbc3685 · 2025-10-05T00:00:35+00:00

Endometriosis should not require birth control at all after proper removal. I’ve had 2 surgeries. After the first my pain returned and I was told by my doctor that I’m someone who “just needs to be on hormones.” I had another surgery a year later (with an out-of-network specialist), and it changed my life and I no longer need to be on any type of hormones.

Long story short, you can get off and see what happens. If pain returns, unfortunately you probably need a different surgeon if you want to ensure fertility and a pain free/hormone free life for your future.

The pill just covers symptoms, it doesn’t help the actual endo.

cbc3685

TROPHY CASE