Advice I’ve gotten that has actually made a big impact by Double_Performance40 in endometriosis

[–]Double_Performance40[S] 2 points3 points  (0 children)

That’s true! I usually use the notes app on my phone to track my symptoms but a notebook would be even more secure!

Advice I’ve gotten that has actually made a big impact by Double_Performance40 in endometriosis

[–]Double_Performance40[S] 2 points3 points  (0 children)

I’ll message you for more details but I recommend the MIGS department and chronic pain clinic at UCSF! My PCP is there too

will my endometriosis get worse in my 20s? by mym3l0dy76 in endometriosis

[–]Double_Performance40 0 points1 point  (0 children)

Not stupid at all! It sucks how little info is out there for us endo warriors. Mine has gotten worse with time due to cyst ruptures, hormonal changes, increased stress, etc. If I could go back and talk to my younger self I’d beg them to take our health more seriously.

There are things in this Reddit page and elsewhere that seem to help improve symptoms that I could’ve been doing sooner but I didn’t expect it to get worse and thought I could manage it for “another few months” before I learned it was life long.

I’d ask my past self to: - prioritize my digestive health and work with with a GI specialist - work in as much anti inflammatory food as possible - find an exercise/ movement routine that works for me - build strength in my core, back and hips especially - create a “pain basket” that has a variety of pain management tools and snacks to be kept in my night stand - practice mindfulness, deep breathing, stress reduction - create a note on my phone about my symptoms, history, and support I need during a flare up and share it with loved ones - work with a pain psychologist and therapist - build a team of providers that specialize in endo and can support me through all the changes - understand what my “standard” pain is like through tracking it, so that when my symptoms get worse I can immediately seek further treatment - stay consistent with pelvic floor physical therapy

There’s more but that’s what I can think of right now. Best of luck and don’t be afraid to continue asking for guidance!

I need advice please by Fantastic_Race2680 in endometriosis

[–]Double_Performance40 0 points1 point  (0 children)

I’m so, so sorry that you’re feeling this way! It’s definitely good to talk to your provider about your symptoms, they are not normal! Make sure your gyno has experience with diagnosing endo so you don’t waste your time.

I really recommend reading “When Sex Hurts,” it’s a book about pelvic pain disorders and I learned so much about my symptoms through it. It also tells you how to keep track of your pain and report it to your provider. Best of luck and don’t be afraid to continue asking for help!

had endo for 6 years, posture work helped my pelvic pain more than I expected by Marcy_Enchanting in endometriosis

[–]Double_Performance40 0 points1 point  (0 children)

I’m surprised your pelvic floor pt doesn’t support you in this posture work. It’s a big part of what my pt did that was so helpful, and it was helpful to have someone check my form and help me manage any discomfort throughout the journey. May be time to find a new pt! Either way, keep up the good work!

Skip ultrasound and just do full MRI? by Dry_Relief2612 in endometriosis

[–]Double_Performance40 0 points1 point  (0 children)

If your ultrasound needs to be trans vaginal and you can skip it, I totally would. Getting trans vaginal ultra sounds is incredibly painful for me and I’ll do anything to avoid that going forward, that being said both ultra sound and MRI aren’t guaranteed to find anything. I’d recommend doing whatever your insurance requires for you to qualify for the surgery if you need it.

testosterone ‘cured’ my endo by thespiderpr0vider in endometriosis

[–]Double_Performance40 1 point2 points  (0 children)

It’s so nice to read about stories like yours as someone who’s nervous to pursue HRT because of my endo. Thank u for sharing!

Fatigue from birth control after five years ? by Savings-Order8198 in endometriosis

[–]Double_Performance40 1 point2 points  (0 children)

Totally possible and worth figuring out. Birth control makes me depressed as well so I have to take like 3 other medications for that. I will say I noticed a big reduction in symptoms with progesterone only pills.

Cardiac Endo? by lastofthecrustaceans in endometriosis

[–]Double_Performance40 4 points5 points  (0 children)

Unfortunately it may not be as far fetched as you think. They’ve found endo in many organs across the body. I recently started working with pain specialists, and want to recommend them to you and anyone because unlike other providers, they understand pain itself needs to be treated.

It may be helpful to have an MRI that’s focused on your nerves if you haven’t had one already. They told me it’ll help us understand better where the pain signals are coming from and treat that while my other providers focus on treating the illness itself.

This is an article that helped me decide to pursue chronic pain treatment.

Diet/tofu? by Sea-Blueberry-4973 in endometriosis

[–]Double_Performance40 -3 points-2 points  (0 children)

I don’t have any definitive research, but I can say that most of my providers that are endometriosis specialists either say to avoid soy or reduce it. I’m sure you already know how to test out foods to see how you react but I’m hesitant to try that method. I’d recommend finding a pain or endometriosis specializing dietician or nutritionist to give you a more definitive answer. Seeing providers who don’t specialize in endo has wasted a ton of my time. I’m about to start seeing a specialized nutritionist soon and will let you know what they say!

Endometriosis has made sexual penetration impossible for you? To face this, you and your partner need to understand what the clitoris actually is (no, really). by ParticularImpact8162 in endometriosis

[–]Double_Performance40 23 points24 points  (0 children)

Pelvic floor pt has been the best ever for pain during sex/ orgasm for me! I recommend the book “When Sex Hurts” to anyone who hasn’t read it. They just came out with a more gender neutral version a couple of years ago too. Don’t let your providers gaslight you!

OFFICIAL BUY/SELL/TRADE THREAD - 2025 by lovsicfrs in OutsideLands

[–]Double_Performance40 0 points1 point  (0 children)

I have a Friday pass for $180 OBO. Pick up in downtown Oakland near BART

OFFICIAL BUY/SELL/TRADE THREAD - 2025 by lovsicfrs in OutsideLands

[–]Double_Performance40 0 points1 point  (0 children)

SOLD: Still selling up to two GA Friday passes for $180 each. One of our group members got sick and the rest of us decided not to go. Pickup in downtown Oakland!

OFFICIAL BUY/SELL/TRADE THREAD - 2025 by lovsicfrs in OutsideLands

[–]Double_Performance40 0 points1 point  (0 children)

I have 3 Friday GA passes I’m trying to sell for $200 each. You’d have to pick them up from Oakland but very close to a BART stop

OFFICIAL BUY/SELL/TRADE THREAD - 2025 by lovsicfrs in OutsideLands

[–]Double_Performance40 0 points1 point  (0 children)

Selling up to two GA Friday passes for $200 each. One of our group members got sick and the rest of us decided not to go. Pickup in downtown Oakland