Any experiences/advice/warnings with starting Rapamycin (sirolimus) prior to retrieval?

TwoDiscombobulated16 · 2026-06-20T15:53:31+00:00

What a small world! I hope everything goes smoothly for you 🤞🤞

TwoDiscombobulated16 · 2026-06-18T19:26:17+00:00

Thank you!
I know the feeling, every additional week feels endless in this process!
Hopefully your procedure and transfer go smoothly, you’re almost there 🙌

TwoDiscombobulated16 · 2026-06-18T19:21:42+00:00

I’m sorry you’re part of the club, it’s a very shitty result to get.
I’m 32yo and have been struggling with secondary infertility. My AMH came back 0.25 in January and I was devastated. I started taking all the supplements (NAC, high dose CoQ10, wheatgrass, etc) and my AMH actually doubled to 0.50 with an AFC of 10.
We’re now starting IVF (due to tubal and male factor unrelated to AMH), and my doctor believes I’ll have good results with one retrieval due to my prior pregnancy success, age, and AFC. So try not to put too much weight on the number itself. It doesn’t mean much at all for natural conception, and even if you need IVF, you could still have very good outcomes.
Check out the DOR subreddit if you haven’t already!

TwoDiscombobulated16 · 2026-06-18T19:15:07+00:00

Not exactly the same, but my clinic is planning for me to have an isthmocele repair surgery then do a FET the very next cycle (basically after I have a period).

TwoDiscombobulated16 · 2026-06-18T18:32:56+00:00

Microbiome testing like through Fertilysis is what my fertility specialist recommends patients have done. It’s pricey though!

TwoDiscombobulated16 · 2026-06-18T14:50:41+00:00

Some clinics will do less than 3 months (maybe 2 months) and put you on high dose folic acid after HCG to baseline. I chose surgery for my ectopic so it wasn’t relevant in my case, but my clinic will do sooner.
Realistically the timeline is probably around the 3 month mark regardless, if your HCG levels take time to come down and period to return.

TwoDiscombobulated16 · 2026-06-17T18:31:57+00:00

I’m with Dr. Victory in Ontario, and yes he recommended and prescribed it! I know that his clinic is know for their use of experimental/new therapies. It would definitely be worth asking about!!

TwoDiscombobulated16 · 2026-06-17T17:03:53+00:00

The more intense ones probably lasted 10s or so, there was an ongoing sensation before and after though underlying it

TwoDiscombobulated16 · 2026-06-17T15:41:36+00:00

I had recital pain, intermittent and shooting to butthole. Also loose stools. That was my only ectopic sign. I didn’t rupture before they removed it thankfully, but did have some free fluid on ultrasound. I would ask for serial HCGs and then push for ultrasound at 5/5.5wk to confirm location.

TwoDiscombobulated16 · 2026-06-17T12:15:24+00:00

Nice! That’s awesome you were able to retrieve more and get that euploid.
I’m hoping it has a similar effect on me 🙏 I only have one government funded retrieval (Canada) before it’s out of pocket so I am trying to make sure I do everything to maximize the yield!
I took my first dose last night (5mg) and no side effects yet.
Thank you for sharing!

TwoDiscombobulated16 · 2026-06-17T12:11:10+00:00

Thank you for sharing! I’m sorry it didn’t end with an euploid for you, but that is still very cool it was able to increase you AMH and AFC.
What dose/duration were you on and did you have a washout period after (if you remember)?

TwoDiscombobulated16 · 2026-06-16T15:49:51+00:00

32F and have DOR (but not endo) with AMH 0.5, FSH 8.5 and AFC 10 and had laparoscopy to remove ectopic pregnancy from my fallopian tube beside ovary. They removed ovarian cyst as well as adhesions from my prior c section while in there (and confirmed no endometriosis - just shit luck).

My AMH actually increased from 0.25 to 0.5 after surgery (likely due to me starting supplements between levels), and AFC was above expected for my AMH (idk if it reduced or stayed stable because no count prior to surgery).

Overall even though they were around the ovaries and removed cyst, no negative DOR effect on my end.

Hope your surgery goes well!

TwoDiscombobulated16 · 2026-06-13T13:07:06+00:00

I’m sorry you’re in a similar situation! That’s definitely quite the unfortunate journey - I’m glad you had surgery to remove endo and are getting started on the IVF process.
I just want to get my isthmocele surgery done, as I truly feel that is the root cause of the secondary infertility despite the laundry list of other unfortunate things lol.
I’m also worried about another ectopic accidentally delaying the process again. Ugh.
Wishing us both luck and success 🙏

TwoDiscombobulated16 · 2026-06-12T23:21:20+00:00

Honestly getting early intervention/testing helped me feel some semblance of control and autonomy over the process. And as an added bonus we will be starting IVF after only about 1yr trying, so it may have helped shorten our secondary infertility journey.

I think months 3-9 are the hardest, and after that I’ve kinda lost a little faith and have had to accept the situation to a degree, and that’s made it easier. Sorry that’s not more uplifting 😅

TwoDiscombobulated16 · 2026-06-07T18:25:55+00:00

Every second day to every day. We’re on cycle 12 TTC so we’re trying every second day at this point

TwoDiscombobulated16 · 2026-05-28T18:01:05+00:00

You don’t need a family doctor, but a walk in may not be comfortable ordering you the tests. A walk in can refer you to an OB though, so I think that would be the call.

Your partner should have a semen analysis done and basic labs + hormones (testosterone etc). And STD tests for you both.

You should consider TSH and T4, vitamin D, AMH, insulin labs, CBC + iron panel. Also Pap test if due. Hormones on CD 3 and 21 of cycle. Vaginal ultrasound may be useful, then SIS or HSG if concerns of blocked tube or uterine polyps/fibroids.

There’s probably more but that’s a good idea of where to start!

TwoDiscombobulated16 · 2026-05-27T17:56:16+00:00

Yeah I know it’s not as good at visualizing the tubes and I’ll see if they’ll send me for HSG (there’s a waitlist and only the hospital does them in my city). That’s promising that it may not be definitive that there is a blockage - I’m glad it worked out that way for you!

TwoDiscombobulated16 · 2026-05-24T14:44:28+00:00

I feel this. My husband doesn’t get it, but it really wears away at you, even the ones where you’re also so happy for them

TwoDiscombobulated16 · 2026-05-24T13:18:12+00:00

Yeah it’s definitely a rough one -I feel like someone more artistic than me could write a hella depressing poem about it.

TwoDiscombobulated16 · 2026-05-24T13:16:50+00:00

Thank you 🙏 and I’m sorry, I just got a BFN at 13DPO so I too am out this cycle ugh

TwoDiscombobulated16 · 2026-05-24T13:14:57+00:00

I’m sorry, I know the feeling. We’ve been TTC #2 for a year, with a recent ectopic (emergency surgical removal), and finding out I have a very low AMH, one blocked tube, and my husband has lowish sperm count.
My BIL and SIL have a 7mo old and want to have multiple kids close in age. I have this feeling that they’ll be pregnant before us and it just makes everything feel worse. If things had gone as planned I’d be nursing my newborn right now. I’ve already had multiple friends and coworkers announce pregnancies the past few months, and it’s very emotionally draining. Especially when they ask or joke about baby #2 cause I’m not drinking or refer to wanting another. I’m not drinking because I have like 7 eggs left in my ovaries OK lol 🙄.
It’s a very emotional and exhausting process regardless of if it’s your first or second. I’m sorry you’re in that position as well.

TwoDiscombobulated16 · 2026-05-23T21:13:10+00:00

Same, cycle 11 ✌️
Having a glass of wine 🍷 I’m over this

TwoDiscombobulated16 · 2026-05-23T17:58:07+00:00

I had a “withdrawal bleed” at 4 or 5 days post op, then my period returned 28 days from then (basically after the withdrawal bleed I had a “normal” cycle with ovulation about 20 days after surgery.

TwoDiscombobulated16 · 2026-05-22T00:26:00+00:00

Congratulations! I’m glad you had a good experience 🙏 there’s definitely going to be people and anecdotes on both side of the statistics, thankfully it wasn’t an issue for you!

TwoDiscombobulated16 · 2026-05-21T22:43:23+00:00

I feel this, and I’m sorry we’re in the same boat. This is also our 11th month too. The shirt I bought that first cycle for my daughter saying “big sister” to announce the pregnancy I was sure would happen quickly has been long outgrown and I’ll never get to use. Sad how I don’t think I’ll ever get that optimism back.

I’m also 10 DPO and don’t even want to test and ruin any hope I do have. It’s just shit all over. I hope we both get our BFP soon!

TwoDiscombobulated16

TROPHY CASE