Hi there. I was diagnosed with endo/adeno by an endo expert in November of 2024 after 3 emergency laparoscopies for functional ovarian cysts causing intermittent torsion (both sides). I just had another one, but that is not what my question is about. The gynos who did those surgeries totally missed what ended up being stage 3 endo and adeno w/DIE; one was adamant that I did *not* have endo because she had “seen in there herself”. I had endo excision surgery in January 2025 with an excellent surgeon, but have had bad pelvic pain beginning ~4 months post-op. I also discovered I had a serious vitamin D deficiency at that time (I live in upstate NY). I also regularly test positive for HPV/abnormal pap, since the HPV vaccine came out after I was sexually active. I recently began taking AHCC, an active hexose correlated compound made from shiitake mushrooms, for HPV. Here is my question: I don’t understand if taking something that is meant to enhance the immune system should help with endo/adeno (particularly with preventing new adhesions and growth post-op), or if it could exacerbate my pain if I have already begun forming new growths. I also happen to have migraine with aura, and every time I have tried a combination birth control to suppress ovulation (mostly for the functional cysts, which began out of nowhere two years ago, but also for endo/adeno symptom control), I have severe and prolonged migraine episodes that land me in the ER with symptoms of stroke/blood clot (but are always just migraine). So do immune-enhancing treatments like AHCC help or hurt if you have endo/adeno? Thank you very much for your time.
Endometriosis
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Hi there, and thank you for sharing your story—I can tell you’ve been through a lot. You’re right that endometriosis and adenomyosis are complex diseases, and unfortunately, our understanding of what actually modifies the disease course long-term is still limited.
At this time, we don’t have strong scientific evidence that immune-enhancing supplements like AHCC (or other anti-inflammatory/immune-modulating compounds) change the behavior of endometriosis or adenomyosis. These strategies haven’t been studied in rigorous clinical trials for endo/adeno, so we simply don’t know whether they help prevent recurrence, reduce adhesions, or alter disease activity.
That doesn’t mean they couldn’t help—it just means we don’t have proof either way. If you feel subjectively better when taking them and they aren’t causing side effects, then it’s reasonable to continue. If you don’t notice benefit, it’s equally reasonable to save your money, since these products can be expensive and are not standardized the way prescription medications are.
As for your migraines, you’re absolutely correct that estrogen-containing birth control is not safe for patients with migraine with aura due to stroke risk. That limits some of the more traditional suppression strategies, but there are still progestin-only options or non-hormonal management strategies that can sometimes be tailored individually.