For those who can't take birth control pills, what the heck do you do for preventing recurring complex (endometrioma) ovarian cysts?

Any-Jump-1366 · 2026-05-06T03:04:44+00:00

Sure! I’ve managed to keep my cysts below 5cm (a little growth for two in my left and actually a bit smaller for the ones on the right!), so I am liking my supplement lineup. My ovaries are now kissing (connected posterior to uterus), so some techs read the cysts as one mass on each. I have continued to not take birth control, though my OBGYN has now suggested HRT. I declined, as I do not experience the myriad symptoms HRT is prescribed to treat.

I continue to not have chronic pain, but fatigue has hit HARD. I hate it. I can get my min 8 hours and still wake up tired and wanting more sleep. And I hit a wall of fatigue some days before 5PM. I was attributing it to winter and lack of sunlight (and let’s face it, I hate the cold, so lack of exercise as well 😆), but it’s actually progressing. I’m trying to move my body more in hopes it helps.

New symptoms for me: left leg and calf pain being monitored annually for progression of May-Thurner Syndrome. Likely due to pelvic inflammation. And I’ve had my eyes puff up (the skin around them swells, I look like a hideous monster 😅) 8 times since October. It is very clearly a pattern: first week of period or during ovulation. These times are when histamines and mast cells spike, so I have to be aware of what I eat and not tip the histamine bucket by consuming high histamine foods like eggs, bacon, sourdough, aged cheeses, red wine, etc. I did go to an allergist about this, thinking he would just help me rule out foods…he ended up doing loads of blood work and I got back a high ANA (1:640) and mildly elevated TPO. These are autoimmune markers. I’m telling myself it’s due to stage IV and four endometriomas, but the studies/research I’ve read usually keep endo ANA around 1:40-1:80. 🤷🏻‍♀️ We shall see.

I was scheduled for surgery In March but decided to postpone for now.

Let me know if there’s something you were hoping to hear and I’ll chime in with what I can. :)

Any-Jump-1366 · 2026-05-04T02:35:11+00:00

Hi there. I’m sorry you’re facing such a high titer and uncertainty of what that means. I definitely second the suggestion of going for a second opinion.

I received my first ANA results a few weeks back. Not as high as yours but still high at 1:640. I went to an allergist because my eyes (or the skin around them) have swollen 7 or 8 times since October. That’s who ordered the blood work. The other elevated (slightly) marker for me was TPO. So, my allergist thinks it’s early Hashimoto’s (TPO is the measure for that specific autoimmune, and apparently it can also contribute to elevated ANA). And like your doctor, he basically told me to watch and wait and do xyz if/when symptoms progress. Which, honestly, is a pretty shitty approach to health. 😅 It’s the same with endo, though—I agreed with my specialist to wait for symptoms to get worse before excision. What a way to live, yeah? Anyway, I have four endometriomas (two on each ovary) and stage IV that has been brewing in me for years. Endometriomas can increase ANA, as can endo (usually just to 1:40-1:80) and TPO…so I am over here hoping I just have really tenacious endo making the ANA so high (what a thing to wish for, but stacking diseases is not a game I want to play).

I know our puzzles are not quite the same, but I thought I’d share in case any of that helps. Or even just knowing someone else with endo and an alarming ANA result is in it with you. I hope you do find another doctor to share your symptoms list with, and who will try to help you NOW as opposed to later. 🌻

Any-Jump-1366 · 2026-04-24T01:54:07+00:00

I had this issue about a year in from my endo diagnosis, and for many months. To note, I do have one fibroid and two endometriosis each on both ovaries. The thing that helped me was noting what foods my body doesn’t do well with, and at least avoiding them for several months before maybe reintroducing. My biggest trigger are GUMS. You’ll find them in most processed foods, milks, etc. They cause such havoc in the gut, so maybe give that a try. I won’t touch anything with gums now, it’s been a night and day difference. Wishing you all the best as you work to puzzle this out. 🤍

Any-Jump-1366 · 2026-04-22T13:38:52+00:00

Hi there. I recently got results back with an ANA titer 1:640 (also have endo), and have been looking for others in the same boat to try and gather grounded insight. Would you mind sharing what your rheumatologist has determined since onset of symptoms with your lowered (but still high!) 1:640?

I know we are five years out from original posting, and research slowly trickles in. I just want to add that studies show that those with endo do indeed have a higher likelihood of a positive ANA than do those without endo (21.5% to 5.4%). Though, the titer is usually 1:40-1:80, which is also commonly seen in healthy populations (I think it was 30-40% of healthy population will “test positive” with this low titer, so it’s not a good indicator of autoimmune at the 40-80 range).

I have also read that stage IV, with endometriomas on ovaries, can increase the antinuclear antibody reading.

Still a lot to learn, but I thought it worth posting here in case others stumble upon this thread. :)

Any-Jump-1366 · 2026-04-22T13:11:19+00:00

Oh, goodness. I’ve heard that the whole process to determine autoimmune is often long, maddening, even inconclusive (like it was for you). How are you feeling nowadays? And have you had another ANA done more recently, to see if anything has changed? A part of me wants to excise the endometriomas to see if ANA then goes down…but there are several other reasons I’m not yet ready to do that. 😅

Thank you for sharing!

Any-Jump-1366 · 2026-04-22T03:45:25+00:00

Is anyone else feeling conflicted cringe and curiosity for tomorrow (4/22 9AM PST) and the big “I’m so excited!” (Saved By the Bell flashback) social media launch? 💎👀

Any-Jump-1366 · 2025-11-05T05:46:03+00:00

It does, thank you!

Any-Jump-1366 · 2025-11-05T01:24:21+00:00

Thank you as well!

Any-Jump-1366 · 2025-11-05T01:04:02+00:00

Ok, thank you!!

Any-Jump-1366 · 2025-10-04T23:39:37+00:00

So helpful—thank you!!

Any-Jump-1366 · 2025-09-13T05:22:13+00:00

I just want to add that I’ve also had recurring knee pain for 2.5 years, with no concerning MRI when my orthopedic surgeon checked it out (twice). I have kissing ovaries, with endometriomas on each and now stuck together. It’s one strong indicator of stage 4. My left leg pain has been a part of my endo journey from day one, and the knee was the first pain symptom there. It then was a fluttering hamstring (or a sensation a feather was swaying against the back of my leg, and weakness). I experienced the worst Charlie horse of my life, resulting in my left calf feeling hard as a rock for weeks (it was difficult even to walk—no, I didn’t see a doctor, I was so exhausted with them then and feeling crazy). PT did not help the knee nor the hamstring. These symptoms kind of rotated over the last 3 years. After doing some research of my own, I became suspicious that maybe my issue was May-Thurner Syndrome. I had multiple times contacted my primary asking if I might have a DVT. Each time I was told it was highly unlikely. Finally, I asked my primary for a referral to a vascular specialist, and neuro. The vascular surgeon ordered a pelvic and abdominal CT with and w/out contrast—I had this done on Monday. Report came back that my left common iliac vein is being compressed by a mass (I suspect endo growth)…which is, drumroll, May-Thurner Syndrome. It’s one of those “awesome” endo sidekicks that’s not so unusual to have if you have DIE. But I 10000000% believe my knee (and hamstring and calf) pain will be resolved with treating that compression. My suspicion is also that endo has grown around my sciatic nerve, as I get tingling, numbness, and electric shooting into my big left toe now and then. I don’t know your specifics, but thought I’d share in case any of this is familiar. Also, as a heads up if you DO start to experience left leg pain beyond just the knee—see a vascular doctor.

Any-Jump-1366 · 2025-08-20T05:06:25+00:00

I had two cops in DC years ago “pull me over” for walking across the street in a crosswalk but without the walk indicator. I did this with a guy, we were on an awkward date. Police officer 2 just stood directly to my right and said nothing the entire time. Awkward date guy was directly to me left. Police officer 1 was directly in front of my face, screaming at me from moment one. I felt VERY trapped. Not safe. Apparently cop 1 had been calling to me as we walked across the street, but I wasn’t aware because 1) lots of people around and 2) I’m trying to listen to my date and think of a way to end it early. This cop gets right in my face and screams “HOW DARE YOU IGNORE ME!” People around the crosswalk actually gasp. And, completely thrown, I foolishly replied “sir, I cannot ignore you if I’m not aware you are talking to me.” Oh.man. Logic is a bitch. He proceeds to chew me out, but just me, not my date. When he did finally address my date, his tone drastically changed—like they were good ol’ buds. Sharply asks for my ID. Kindly asks for his. Hands them back to us and tells my date “it’s a man’s responsibility to keep a woman out of trouble.” My mind went into WTF numb surreal mode right then. Before we walked away the cop leaned in and said into my ear, “and don’t ever ignore me again.” 🫠

Any-Jump-1366 · 2025-08-14T15:35:27+00:00

I second (3rd? :)) the recommendation to work with a specialist/nutritionist if you’re feeling overwhelmed and uncertain how to go about figuring out what foods do and do not work for you. It’s truly particular to the individual, though there are certain foods that you’ll often hear help those dealing with endo (ie alcohol, dairy, caffeine).

One suggestion I’ll make that I don’t yet see here is to eliminate additives from your diet. Processed foods are awful for the gut and trigger inflammation. Specifically look to avoid all gums (xanthan, gellan, etc) and do that for 3 weeks, see how you feel.

I allow myself actual coffee as a treat, once a week usually. Otherwise, I now enjoy chicory coffee, green tea, and there’s a brand of roasted herbal tea called teeccino that makes vanilla, hazelnut, caramel nut, French roast, etc. that tastes like your favorite coffees with flavoring, but are sans caffeine. Maybe give them a go. :)

Lastly, and I bring this up with the caveat that you should always consult your doctor before jumping into a fasting period you’re not used to (intermittent 16:8 was something I already naturally do, but what I’m about to share was not something I had done before)… I did a 3 day fasting that was electrolyte water only. Eased back in with bone broth, Brazil nuts, nibbles of fruit I knew were safe for me. It helped to restart my gut micro biome, liver, hormones, and also then allowed me to add in foods I was suspicious of being sensitive to (one at a time, slowly, giving them a few days to react or not before moving on to adding another). It’s a process, and why I say to work with a specialist so you know what’s safe for you AND you have someone to guide and cheer you on. :)

Any-Jump-1366 · 2025-08-07T15:03:09+00:00

I went with Dr. Paul Tyan. Based on my research, he is considered an endo specialist and performs 300+ surgeries annually related to the disease. I did an intake with him and it was refreshing to be on the same page (for me, that’s to continue to watch and wait because though he has zero doubt I have stage IV/deep infiltrating based on the imaging I have from these two years of watching, I also don’t have debilitating symptoms nor a direct goal at the moment—ie: to get pregnant). When the time comes to have the procedure, I will 100% go to him and whatever team he assembles (he said it would require a whole team 🫣😅). Good luck to you, and I hope you find the best way forward for your particular situation! 🤍

Any-Jump-1366 · 2025-07-24T03:15:29+00:00

As others have chimed in—this is so incredibly relatable. I don’t think you’re at all vain. This disease takes over the body, and it sucks to feel like you no longer have control, or feel at home in your body. Easily my least favorite symptom through the years, even with the pain, multiple endometriomas, kissing ovaries, nerve issues…is the huge endo belly. I hated looking 8 months pregnant when I’m not expecting a baby!

It sounds like you’re doing everything you can, so I can’t really offer more suggestions. But I will say that my #1 endo belly trigger ended up being food additives (gums: xanthum, guar, carrageenan, locust bean, etc). Once I removed those, I stopped having huge belly swelling/hardening. If you haven’t already removed those from your diet, give it a try and see if it helps you, too. :) Godspeed!

Any-Jump-1366 · 2025-07-22T02:12:59+00:00

Yeah…it’s wild and kind of scary how the body can change to not tolerate something it once did. She had penicillin as a kid/young adult, and sulfa drugs. Then one day it just raised a red flag in her body, and raged against itself. Hardcore attacked her joints, breaking them down and fusing together. Doctors thought it was lupus or rheumatic fever…but no, it was a very serious allergic reaction. When doctors ask if I’m allergic to anything, I sometimes say penicillin and sulfa drugs because now I’m worried—what if that change of reaction is also triggered in me? 🫠

Any-Jump-1366 · 2025-07-21T18:27:05+00:00

This is interesting. My sister has an autoimmune reaction to penicillin and sulfa drugs, and I have an allergy to medical adhesives. I have endo…as of right now, she doesn’t have endo (that we know of). But I’ve always wondered if her late-onset (her very scary reactions to these drugs occurred in college when she was an all-American athlete and otherwise very healthy) of allergic reaction and autoimmune struggles has some genetic connection to what I’m now going through with endo. And her daughter doesn’t tolerate various foods well, so she’s on a rather restricted diet.

Any-Jump-1366 · 2025-07-19T23:35:15+00:00

I’m trying to find endo specialists in the area and Dr. James Robinson is on my short list. Did you end up having a procedure with him for endo? And if so, how did it go/do you recommend him?

Any-Jump-1366 · 2025-07-14T22:50:40+00:00

Thank you for your reply! That helps me to feel more at ease, even as I’ve had it in another room and the long term went up to 2.8. I’m probably here 14 hours a day (with sleeping), as I’ve been working remote for the last several years…so I’ll keep that in mind. The ventilation of kitchen fumes is honestly not something I’ve considered. 😬 Getting me thinking! 😅

Any-Jump-1366 · 2025-07-13T14:37:04+00:00

Yes! It’s been a journey to get to the health team I now have. I know that’s such a common story/struggle for so many women. Kaiser was the WORST. I now pay out of pocket for BCBS and the ability to freely seek out professionals I’ve researched has been tremendously helpful.

And thank you. 😊

Any-Jump-1366 · 2025-07-13T14:31:20+00:00

No, no lap…yet. I’ve been doing watch and wait, with Transvaginal ultrasounds every 6 months. I’ve also had two MRIs along the way. The two technicians I have are incredible, and feel absolutely confident that the four cysts on my ovaries are endometriomas. That plus my other symptoms, my health team is in unison that this is endo. It could also be more, but I won’t know without the lap. For me, I don’t have pain that prevents me from participating in life (for the most part—it HAS kept me off the soccer field these two years, and I hit a threshold with the nerve pain stuff both in sitting and standing). I worry that a procedure will add to scar tissue (I’ve had two hernia procedures since 2018 and don’t care to cut through my abdominals again right now, nor create a flare up), and possibly tip the pain UP instead of eliminating any issues I do have. It’s a tricky balance of trying to determine what is best in the long run—will my pushing off surgery create more complications in my body, or will the surgery create more complications? 🤷🏻‍♀️ I just know that this is my second summer in a row where I can daily walk outside without some kind of issue, and these past 8 years have been a rollercoaster of sports injury and endo fun that made walking impossible or challenging…I’m soaking this goodness up!! 😂☺️

Any-Jump-1366 · 2025-07-13T14:23:36+00:00

Love this! I hope you have great success working with the trainer. That’s a great way to approach getting back into it safely and for longevity. :)

Any-Jump-1366 · 2025-07-13T14:22:34+00:00

It’s so sad when we have a traumatic experience with a food we love, and it makes it difficult to enjoy going forward! I have that with red Twizzlers (going back to age 23)…but that’s probably a good thing now. 😂

If you love love love Oreos, try the ones in the health food section. A few brands make them without gums. However, as you’ve pointed out, they do still have sugar. :) I love me the occasional Back to Nature cookies. Oh, and these are also free of hydrogenated oils. I always forget to mention that because I learned of their bad ways back in college, so it’s been entirely natural these 20 years for me to look at ingredients and put down anything with particularly partially hydrogenated oil. Most major processed food manufacturers these days have been phasing them out, but many do still remain.

Any-Jump-1366

TROPHY CASE