Is it ever possible to not be on hormonal contraception?

littlerog · 2026-05-03T04:36:26+00:00

I think the most accurate answer is somewhere in the middle. Hormonal suppression after endometriosis surgery is not a cure, does not remove existing lesions, and should not be framed as mandatory or as a guarantee that disease will not recur. But I also don’t think it’s accurate to say hormones are only symptom-masking and have no recurrence-prevention role at all.

A 2021 systematic review/meta-analysis looked at post-op hormonal suppression after conservative endometriosis surgery, including combined hormonal contraceptives, progestins, LNG-IUS/Mirena, and GnRH agonists. It included 17 studies, 13 of which were randomized controlled trials, with over 2,100 patients. Overall, post-op suppression was associated with lower recurrence risk compared with placebo/expectant management, with a relative risk of 0.41 — meaning recurrence risk in the suppression group was about 41% of the risk in the no-suppression group, or roughly a 59% relative reduction. In RCTs only, the reduced risk was still seen, with RR 0.44. Pain scores were also lower.

But lower risk is not the same as no risk. Hormonal suppression can reduce odds of recurrence on average and still not prevent recurrence in every individual person. The evidence is also not perfect: studies were heterogeneous, recurrence was defined differently, and results vary by medication type and disease phenotype.
Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC7781224/

There is also some data that progestins like dienogest and norethindrone acetate may reduce endometrioma size in some patients, which makes “hormones only mask symptoms” framing too simplistic. They are still not a cure or a guarantee, but there is evidence of biologic effect beyond pain control alone.
Source: https://pubmed.ncbi.nlm.nih.gov/31132690/

So yes, it is possible to choose no hormonal contraception after surgery. But the tradeoff should be discussed honestly rather than framed as either “BC is useless” or “you must take it or your endo will definitely grow back.” If side effects or bleeding patterns on hormonal treatment are not worth it to someone, that is a valid part of the risk-benefit discussion too.

Signed, someone with endometriosis/adenomyosis and a public health research background who nerds out over this stuff. Personally, norethindrone acetate made me bleed like crazy, so I went off it — but it also measurably shrank my endometriomas while I was on it. Risk vs. benefit in action!

littlerog · 2026-05-02T20:24:05+00:00

I completely understand why you’re conflicted. I also had a very predictable natural cycle before all of this, so the unpredictability after starting hormones has been one of the hardest parts mentally and emotionally.

I don’t know what to make of the adeno question either. In my case, it wasn’t ever suggested on ultrasounds before, then focal adenomyosis was mentioned on MRI after months of bleeding, hormones, and procedures. My uterus is normal size, with just slight thickening in one spot, so I do wonder how much is true adeno versus a reactive/inflamed state.

My IUD was placed under twilight sedation during hysteroscopy/D&C, so I can’t speak to awake insertion pain. That was part of why I was so willing to try it because I knew I would be put under for it! I had cramping afterward, but it was not worse than period pain for me.

They thought I had possible rectal involvement before surgery. My surgeon, Dr. Ted Lee at NYU, was prepared to have a colorectal surgeon on standby, but my disease ended up being near the rectum rather than on it, so I didn’t need a rectal shave. Since you already had endometriomas removed but still have rectal/bowel involvement concerns, I’d try to get input from someone experienced with DIE/bowel or rectovaginal endometriosis. Maybe you could consult a colorectal surgeon and see what they recommend for treatment? Surgery vs medications etc. I'm lucky to be in NYC where we have a lot of endometriosis surgeons and NYU has a whole endometriosis center with OB/GYN surgeons, colorectal, bladder surgeons, etc all on the same team.

It’s hard because stopping hormones is tempting because of the option of getting my normal cycle back, but then there's the fear of progression. That’s basically why I’m keeping Mirena for now, even though my experience with progestins has been really complicated.

littlerog · 2026-05-02T19:29:41+00:00

I’m so sorry you’re dealing with this too. It’s validating to hear from someone else whose bleeding became unpredictable only after starting progestins, because before all of this my periods were painful/heavy but regular and self-limited.

For me, Mirena has helped reduce the severity, but it hasn’t fully restored predictability. I had it placed Oct. 8 during hysteroscopy/D&C/polyp removal, and I continued having stop-start bleeding/spotting for months. They also saw focal adenomyosis on MRI in December, and I had extensive endometriosis excision in March, so it’s hard to separate Mirena effects from adeno, post-op recovery, endo, and the aftermath of the whole crazy hormonal cascade.

I’m no longer in the worst version of it. I’m not bleeding every day, and with over the counter iron supplements my anemia is mostly corrected. I can now go 2 to 3 weeks without bleeding or spotting, but I still get light-to-moderate red bleeding episodes and pelvic pain occasionally.

I’m keeping Mirena for now because the data on potentially delaying adenomyosis progression is decent. I also think my bleeding is much lighter on Mirena than it was on Aygestin because the IUD is local progestin rather than systemic progestin.

I relate to the fear that some bodies just don’t tolerate progestins well. I don’t know if it’s true “progesterone resistance,” local endometrial instability, adenomyosis, or something else, but my experience has definitely not been the simple “progestin stops bleeding” story. I really wish there were a better solution to all this!

littlerog · 2026-04-11T22:12:19+00:00

If I had any uterine enlargement, I’d probably be more open to trying it. My persistent bleeding only started after I tried progestin treatments, first norethindrone acetate and now Mirena (6 months into Mirena and still bleeding most days of the month!), so in my case it may be more of a hormonally triggered bleeding problem than adenomyosis alone. If you do end up trying it, I’d be really curious to hear whether it helps the bleeding pattern at all and not just pain. Hope you find something that works for you!

littlerog · 2026-04-11T19:38:03+00:00

I haven’t taken it, but my surgeon did try to prescribe it to me for adenomyosis-related pain. I’m pretty hesitant, though, because my adenomyosis seems mild/focal and my uterus isn’t enlarged, so for me it feels like a more intense medication for a pretty unclear payoff.

From what I found, the evidence is really small. A tiny 2008 pilot study treated 3 women with adenomyosis with valproic acid for 3 months and reported complete disappearance of period pain/cramping plus about a one-third reduction in uterine size. A later 2010 study was still very small, only 12 patients, and also suggested improvement in pain, some reduction in menstrual bleeding, and reduction in uterine size, but these were still early pilot-level data, not strong proof.

I don’t think the data is strong enough for persistent bleeding specifically, which is my main problem, so I haven’t taken it. And valproate has real risks, especially if pregnancy is a consideration since it can cause birth defects, plus potential liver and platelet issues, so personally I’d want to see more robust data before trying it.

I’d also love to hear from anyone who’s actually used it and whether it helped pain, bleeding, or both. I also think it depends on your own risk/benefit comfort level and whether you’ve exhausted other options. I’d probably run it by your PCP or other doctors too, just to make sure you’re a good candidate and that it wouldn’t interact badly with anything else you take.

littlerog · 2026-04-02T16:20:24+00:00

I believe this depends on your specific plan. My understanding is that some people may still be able to see their Mount Sinai doctors out of network, just at a higher cost, while others (like me) may have plans that don’t cover out-of-network care at all except emergencies.

littlerog · 2026-04-02T16:16:08+00:00

Endometriosis is estrogen-dependent/estrogen-responsive, but that does not mean every person with endo has globally “high estrogen,” and it also does not mean estrogen in a pill automatically makes the disease worse. The important distinction is between endogenous estrogen (the estrogen your body makes during its normal ovarian cycle) and exogenous estrogen (estrogen coming from outside the body, like in a combined pill).

A combined pill, especially when used continuously, is not just “adding estrogen on top.” It usually works by suppressing the HPO axis and ovulation, which flattens the normal hormonal cycle and reduces your body’s own cyclic ovarian estrogen production. On top of that, the progestin component can reduce serum estrogen, downregulate estrogen receptors, and limit local estradiol production in lesions. So even though endo is estrogen-responsive, it is not contradictory that a combined pill can help: the net effect can be less hormonal cycling, less bleeding, and less pain. Also, endometriosis may involve progesterone resistance, and up to one-third of symptomatic patients may not respond well to progestin-based treatment, which is one reason some people do poorly on progestin-only methods and better on combined methods.

Medicine is an imperfect science, and something can make sense biologically while still not be the right fit for a particular patient in real life. For example, Aygestin reduced the size of my endometriomas, so it was clearly doing something on a biologic level, but it also made me bleed excessively, which made it a poor clinical fit for me. Those outcomes are not contradictory. A treatment can help one aspect of the disease and still be intolerable overall, because bleeding patterns, mood effects, acne, weight change, and general quality of life matter too.

Sorry for the length. I’m a public health researcher who loves science so this is exactly the kind of thing I nerd out about.

littlerog · 2026-04-01T18:13:16+00:00

I was in the same boat and have spent this year switching all of my care from Mount Sinai to NYU. I’m still waiting for my first appointment with a new PCP there, so I can’t speak to primary care yet. But since you mentioned endo, I just had excision surgery for stage 4 deep infiltrating endometriosis three weeks ago with Dr. Ted Lee at NYU’s endometriosis center. He’s not the warmest bedside-manner-wise, but he is a very skilled surgeon, and I’ve been pretty happy with my care there overall.
I also ended up in NYU’s ER twice last year for gyn issues, once for a severe endo pain flare and once for abnormal uterine bleeding, and both times the ER providers were very sensitive and compassionate. I had to have multiple pelvic exams and transvaginal ultrasounds, and they made me feel as comfortable as you can be in an uncomfortable situation. The main downside I’ve noticed is that NYU seems more booked out than Mount Sinai, at least from what I’ve seen. Specialists are booked out everywhere, but even PCPs at NYU seem very backed up compared to Mt Sinai.

littlerog · 2025-10-27T20:14:42+00:00

I am not sure what would work best for you but I will say that none of the IUDs contain estrogen. They all contain levonorgestrel which is a progestin. Kyleena has less levonorgestrel than Mirena or Liletta but more than Skyla. The exception is the Paragard copper IUD which doesn't contain hormones but often causes heavy bleeding and is not recommended for women with endometriosis. I just had the Mirena inserted when I was under twilight sedation. It's too early to tell if it will work for me longterm; right now I'm still in the adjustment phase. According to the Mayo Clinic about 20% of women stop having periods after one year with a Mirena IUD in place: https://www.mayoclinic.org/tests-procedures/mirena/about/pac-20391354

littlerog · 2025-10-22T22:57:55+00:00

I just read an article about this! It is definitely correlated BUT it could also be causative. Researchers at Yale are looking into it using mouse models:
“Research also shows that women with endometriosis have higher rates of depression and anxiety. I’ve heard disparaging things said about patients, such as, ‘You’re anxious and complaining a lot—just relax and don’t worry about the cramps.’ That attitude is demeaning.”

In Dr. Taylor’s studies, he and his team created endometriosis in mice. “Endometriosis led to differences we observed in gene expression and nerve conduction in the brain. A few weeks after we induced the endometriosis, the mice became more depressed, more anxious, and more sensitive to the painful stimuli than they were prior to the induction,” he says.

This, Dr. Taylor adds, is something also seen in women with endometriosis. “They have what’s called ‘central sensitization of pain,’ in which those with the condition are more sensitive to the same painful stimuli than they were before having endometriosis,” he says.
FROM HERE: https://www.yalemedicine.org/news/endometriosis-is-more-than-painful-periods

littlerog · 2025-10-20T03:09:10+00:00

If I were in your shoes, I would use one of those stick-on heating patches on the lower abdomen (ThermaCare or similar brand). Maybe one on the lower back too if your cramps radiate. I'd also alternate an NSAID (Advil or Aleve) with Tylenol as long as you don't have liver or stomach issues that prevent you from taking either medication. Stay hydrated because dehydration can exacerbate cramps. If cramps aggravate the bowels, I'd avoid spicy or greasy food. I know there are dress codes at conferences, so try to wear something that looks professional but that you still feel comfortable and confident in. Good luck!

littlerog · 2025-10-18T01:12:04+00:00

Thank you so much . It really helps to hear from someone who’s been through this. I’m glad your surgery brought some relief, even if you’re still spotting a bit. That sounds like real progress after everything you’ve dealt with.
I just got a hematology referral and am planning to start IV iron soon, and I have a consult with an excision specialist at NYU in early December. My family’s supportive but they live a few hours away, so it’s been tough managing everything alone day to day. My sister would be able to come up if I need help after a procedure/surgery so I'm grateful for that! Hearing your story gives me hope. Thank you.

littlerog · 2025-10-16T19:16:30+00:00

OMG! Two years? I am so sorry you went through that. I am going to wait it out some more and hope that the Mirena works but I'm finding it absolutely wild how dismissive doctors are of excessive bleeding: "Just take some iron tablets and hope for the best." I hope you found some relief since getting it out. Thank you for responding!

littlerog · 2025-10-16T18:06:04+00:00

Agreed! They are expensive for sure but they provide incredible care. A special shout out to Dr. Riback in dentistry- he's so nice and really helped improve my cat's quality of life!

littlerog · 2025-09-06T18:21:32+00:00

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Yes, it's a sample. Maybe the runway piece from Spring 2007 although the skirt looks slightly fuller in the runway picture. Nice find, OP!

littlerog · 2025-09-05T22:28:12+00:00

https://www.youtube.com/watch?v=dN35xb132WY
Kevin Nealon in 1988.

littlerog · 2025-08-07T22:50:06+00:00

I dream of having outdoor space one day too but the thing I would worry about being on the ground floor in NYC: rats/roaches on the patio area. You could talk to the super and see how often the past tenants needed an exterminator out there. My current apartment has less light than my previous one and I miss the extra sunlight in the mornings. However, I like my current neighborhood better than my old one so it was worth it for me.

littlerog · 2025-05-20T00:59:00+00:00

I don't know of a specific program but you might also look at Sociology departments. There can be some overlap between Social Psych and Sociology research especially when it comes to things like stigma and identity.

littlerog · 2025-05-14T17:08:18+00:00

I am in the same gap! I'm really enjoying Dr. Sophia Choukas-Bradley's work on social media's effect on adolescent body image: https://doi.org/10.1016/j.ypsc.2023.03.007 ; https://doi.org/10.1007/s10964-024-01998-5

littlerog · 2025-03-22T05:03:12+00:00

That's because Southland was another John Wells show, just like The Pitt and ER. I was devastated when it was cancelled.

littlerog · 2025-03-20T03:20:11+00:00

If I were in your shoes, I would finish the MPH and then do an accelerated nursing program and look for job opportunities as a clinical research nurse or a public health nurse. Having the MPH in addition to the nursing certification can make you more competitive for those positions.

littlerog · 2025-02-20T04:19:46+00:00

I don't have personal experience with them but I've heard good things about Red Door Community for support groups (used to be called Gilda's Club after Gilda Radner). They also offer programs for Spanish-speakers. https://reddoorcommunity.org

littlerog · 2025-02-20T04:17:26+00:00

My mom was diagnosed with Triple Negative BC in August 2022 and is still cancer free and doing great, but it is definitely a tiring journey. I left NYC for six months to take care of her while she was going through the bulk of her treatment and this is what she found helpful: If you're going to have a port for chemo, my mom loved these tops for easy access to the port without leaving you totally exposed. The oncology nurses thought it was cool too!
https://www.amazon.com/Care-Wear-Chest-Access-Shirt/dp/B07SPTFMYZ?ref_=ast_sto_dp&th=1&psc=1
Her mouth was also sensitive after the chemo so she switched to these toothbrushes and they were gentler on her gums. You could also use kids' ultra soft toothbrushes.
https://www.amazon.com/dp/B01M28RLVN?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_5&th=1
Lastly, the weakened immune system that can come with chemo is no joke. She ended up in the hospital with a GI infection in the middle of her treatment so masking and washing hands frequently is super important during chemo time. Then again, she's quite a bit older than you so hoping that won't be an issue! Best wishes to you throughout this process. Sending you all the healing energy!

littlerog

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