Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyEndometriosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyEndometriosisTeam Member asked a question 💭
Sammamish, WA
January 30, 2025
 · 
Reactions

Answer Summary

Members shared their experiences with oophorectomy for endometriosis, with one member reporting that removing both ovaries helped reduce pain... Read more

Members shared their experiences with oophorectomy for endometriosis, with one member reporting that removing both ovaries helped reduce pain by 60-70%, eliminating leg pain and vaginal spasms, though chronic pelvic pain persisted. Several members described the difficult tradeoff of surgical menopause requiring HRT, which can trigger endometriosis flares, leading to an exhausting process of finding the right estradiol dosage and delivery method (patches, creams, suppositories) that manages menopausal symptoms without worsening endo pain. A recurring theme was the frustration of navigating endless symptom management even after surgery, the value of having a trusted specialist, and the hope offered by sharing practical strategies like compounded bioidentical progesterone, lower-dose estradiol patches, and vaginal estriol suppositories to balance relief with quality of life.

A MyEndometriosisTeam Member

I did hear about this!

February 4, 2025
A MyEndometriosisTeam Member

Also, did y'all hear the FDA approved a new non opioid drug called Journavx (suzetrigine) that will be able to be used for pain management of endo flares? My doctor commented on this one on instagram and I've asked her if she can please put me on it as soon as it is available to try! More info here: https://www.instagram.com/p/DFeSYllsZx9/

Andrea Vidali MD on Instagram: "News in Pain Management:
Dont forget to follow @essi.endometriosis 
The FDA’s recent approval of Journavx (suzetrigine) represents a significant milestone in pain management research. As someone who closely follows medical innovations, I’m particularly excited about this novel approach to treating acute pain.
Unlike traditional opioids that flood the brain’s reward centers, suzetrigine works by strategically blocking the NaV1.8 sodium channel, preventing pain signals from ever reaching the brain. This targeted mechanism could revolutionize how we approach pain treatment, especially in surgical recovery scenarios.
While the drug shows promising results in clinical trials for procedures like tummy tucks and bunion surgeries, its potential implications for conditions like endometriosis remain speculative. The peripheral nerve targeting suggests future research might reveal broader applications.
Vertex Pharmaceuticals is expected to launch the medication in the coming months, with healthcare providers likely incorporating it as a step-up treatment after traditional NSAIDs and acetaminophen.
For those interested in the scientific nuance, the drug’s phase 3 trials demonstrated approximately 50% pain reduction - comparable to opioid combinations - but with significantly lower addiction risks.
Continued research will be crucial in understanding suzetrigine’s long-term efficacy and potential broader applications.
References:
- FDA Approval Documentation
- Vertex Pharmaceuticals Clinical Trials
- NBC News Medical Report, January 2025
#MedicalInnovation #PainManagement
#endometriosis"
Andrea Vidali MD on Instagram: "News in Pain Management: Dont forget to follow @essi.endometriosis The FDA’s recent approval of Journavx (suzetrigine) represents a significant milestone in pain management research. As someone who closely follows medical innovations, I’m particularly excited about this novel approach to treating acute pain. Unlike traditional opioids that flood the brain’s reward centers, suzetrigine works by strategically blocking the NaV1.8 sodium channel, preventing pain signals from ever reaching the brain. This targeted mechanism could revolutionize how we approach pain treatment, especially in surgical recovery scenarios. While the drug shows promising results in clinical trials for procedures like tummy tucks and bunion surgeries, its potential implications for conditions like endometriosis remain speculative. The peripheral nerve targeting suggests future research might reveal broader applications. Vertex Pharmaceuticals is expected to launch the medication in the coming months, with healthcare providers likely incorporating it as a step-up treatment after traditional NSAIDs and acetaminophen. For those interested in the scientific nuance, the drug’s phase 3 trials demonstrated approximately 50% pain reduction - comparable to opioid combinations - but with significantly lower addiction risks. Continued research will be crucial in understanding suzetrigine’s long-term efficacy and potential broader applications. References: - FDA Approval Documentation - Vertex Pharmaceuticals Clinical Trials - NBC News Medical Report, January 2025 #MedicalInnovation #PainManagement #endometriosis"
February 4, 2025
A MyEndometriosisTeam Member

Thank you for all the info! :)

February 4, 2025
A MyEndometriosisTeam Member

I'm so sorry..I can totally relate, it feels like a constant roller coaster trying to find the right "cocktail" of HRT to cover the multitude of symptoms we experience. I know how incredibly difficult and frustrating it is to navigate all of this. The balance between managing severe low-estrogen symptoms and avoiding estrogen fueling endo is such a brutal challenge, and I completely understand how it can feel like there’s no good choice.

For me, after my oophorectomy, my doctor put me on the Estradiol patch, but it has come with so many obstacles, I experience all over body itching(no rash) and morning sickness-like symptoms, so basically we spent months trying to figure out what dosage would work- it's been exhausting.. currently I am on a twice a week patch (0.1 mg) and Estradiol vaginal cream (0.01mg) the cream helps significantly with vaginal dryness, but its so messy.

It’s so frustrating that even after surgery, our bodies can still form endometriomas and cysts—like, haven’t we been through enough? 😩 It sounds like you’re doing everything you can to advocate for yourself, and I hope you find a combination that gives you some relief. I’m happy to share more if it helps! You’re not alone in this. 💛

February 2, 2025
A MyEndometriosisTeam Member

I had an Bilateral Oophorectomy in 2022. To be honest being on HRT comes with its own set of issues, and being "forced" into taking HRT is not how I wanted to face menopause, but due to my family history, and my level of pain, my doctor and I decided it was the best course of action. I have zero reproductive organs now, other than a vagina. I wish I could say my pain is completely gone. I know how tough this decision must be, and I just want to send you some support as you navigate it. If I can offer any advice, it would be to make sure you have a doctor you truly trust and to really discuss all your options beforehand—especially if having kids is something you’re considering. Your health and future matter so much, and you deserve the best care and guidance through this. Sending you strength and hoping you get the clarity and support you need. 💛

January 31, 2025

Related Questions

View All
A MyEndometriosisTeam Member asked a question in Newly Diagnosed group 💭
London, AR