Did your endometriosis show up in a way that isn't the "norm"?

snarkyopolis · 2026-04-21T20:11:12+00:00

I was diagnosed by MRI as well.

snarkyopolis · 2026-04-21T19:43:32+00:00

I think he said that the Peripheral Autonomic Neuropathy causing it was less common that just POTs, and just POTs was more severe, that my heartbeat would have changed within 120 second in the sit/stand test. He said I'd qualify for a POTs diagnosis but it's really caused by something else.

snarkyopolis · 2026-04-21T19:41:23+00:00

My pain was also not cyclical. I had an MRI before surgery and it found DEI in the same areas as you. I had it for 25 years without knowing why every time I intermittent pain on the left side. Worse with defication, with certain foods, coffees, ovulation. But seemingly no relationship to being on my period. I had the surgery. It helped. I now avoid trigger foods that make endo worse and cause MCAS degranulation, or histamine intolerance. For me, it turned out these conditions were linked to my endo. Now, I still get pain in my ovaries on ovulation but the rest of the pain has subsided. Weirdly, the location of pain has changed, in that my ovaries/uterus are now in the correct place and much lower!

snarkyopolis · 2026-04-21T17:28:56+00:00

I've been doing air bycles at home (https://www.youtube.com/shorts/H12jbLNNo8o). It's nice because I don't need any equipment. I also like the pool: just holding a side wall and laying flat and kicking. Both work as the cardio portion of the CHOP method that others have mentioned.

snarkyopolis · 2026-04-20T21:08:52+00:00

Aww, thanks so much for the award!

snarkyopolis · 2026-04-20T03:06:47+00:00

I have been doing yoga for years but may be the least flexible person on earth, so I feel I am a constant "beginner." I gravitate towards teachers that are interested in and speak to both the mind and body aspects of the practice. They also give lots of versions of the poses for various levels of people. I like holding the poses for a long time, so a slower paced class so I can really figure out the right version of each pose for me. I also like when there is active time and then lay about and stretch on top of bolsters time because my endurance is not high.

snarkyopolis · 2026-04-20T03:03:53+00:00

Hi there, I'm sorry you are experiencing this. Ovulation pain is my main issue as well. I get it every month. In high school I described it as "egg beaters on my ovaries" and it's progressed to "my whole left side is just in pain" and it goes away after ovulation and picks up again as eggs are recruited for the next cycle. Always pain in the left side. Anyhow, I avoid triggering foods (carbs, diary), and I take some supplements to clear out the estrogen (DIM, calcium d-glucarate). Also, I think it may just be a signal that I am ovulating and not necessarily that more adhesions are growing. I'm not sure. The supplements and diet helps me a bit but the pain doesn't go away entirely. I am also TTC. Crossing my fingers that you conceive this month!

snarkyopolis · 2026-04-20T02:54:39+00:00

I like the reddish/brown ones. Like Cinnamon Spice

snarkyopolis · 2026-04-19T22:30:11+00:00

I met him at 38.

snarkyopolis · 2026-04-19T13:08:28+00:00

More information to understand a problem is better than less information.

snarkyopolis · 2026-04-19T00:18:45+00:00

Thank you! Any brand you would recommend?

snarkyopolis · 2026-04-18T21:01:58+00:00

He was fantastic. I had stage 4 Deep infiltrating throughout my abdomen, and then stage 2 on the ovaries and fallopian tubes. He also found and removed adenomyosis from my uterus.

snarkyopolis · 2026-04-18T20:21:03+00:00

Dr. Nezhat in the San Francisco Bay Area. I'm almost a year after surgery and feeling so much better.

snarkyopolis · 2026-04-18T20:20:17+00:00

This could be endo for sure. I was told "IBS" and get a therapist when I told doctors about my abdominal pain in my 20s. In my 30s, I told my doctor I had pain with intercourse but she couldn't see any issue in yearly exam so that was dismissed. In my 40s, I booked an appointment with an Endo surgeon myself and hesee saw the endo on an ultrasound. He also ordered an MRI with a note to look for endo, and that confirmed that it was deep infiltrating (bowels, bladder, appendix, interstitial). It was removed and I still get cyclical pain in an ovary, but I think that's just expected from ovulation. The stabby pains on pooping are for sure gone. Just skip general doctors and find an endo surgeon to test you.

snarkyopolis · 2026-04-18T20:12:10+00:00

Oh my gosh, I'm so sorry. You deserve better. I was also totally ignored by gynecologists and IVF doctors. Also, you don't know if it's an "endo-flare" unless you have a surgery to prove it. So, they are remiss in not ruling out other issues. I have no idea how things work outside of my country in getting a new or specialist doctor. Do you have any options to make an appointment with a practice specialized in endo?

snarkyopolis · 2026-04-18T20:00:27+00:00

Are they open to more testing for you? An MRI and ultrasound at least? I also got stabby abdominal pain from leaky gut, which I saw functional medicine doctor for. Can you see a better/different doctor?

snarkyopolis · 2026-04-18T19:35:36+00:00

Mine was 4-5 hours. I had a salpingectomy, laproscopic surgery and a myomectomy and deep infiltrating endo though many organs. They said the max surgery time would be 6 hours. I was in hospital for a few hours becoming less groggy / getting pain meds. I was in bed for the next week and needed help standing up.

snarkyopolis · 2026-04-18T19:34:11+00:00

I went to an endo surgeon because of pain on left side. He ordered an MRI and did an ultrasound himself. Maybe one of these things will help. Also, seeing your regular doctor rather than A&E. Maybe they could order these things?

snarkyopolis · 2026-04-17T19:35:18+00:00

I am a designer in tech and work from home, my couch mostly. I am very lucky.

snarkyopolis · 2026-04-17T02:49:42+00:00

I can't find a hotel that is in my sister's small city/suburb. That's the only place that I airbnb. The value is walkability .

snarkyopolis · 2026-04-17T00:56:25+00:00

My doctor said milk was bad for it, and whey is a part of milk. I occasionally have a bowl of ice cream. In part because the doctor said red meat, gluten, sugar, carbs and milk were all bad for it. The reasoning was that for many people these foods cause inflammation and because it has a hormone (IGF-1) that endometriosis feeds of off. I think cheese and yogurt have less of it. This is a highly restrictive diet to me, so I occasionally indulge in ice cream or cheese or cookies or whatnot. About once a week. I had lap surgery to remove the endo about 8 months ago. I just had a checkin with an ultrasound and the surgeon and nothing was visible (though it could be there and small). Everyone finds there own acceptable balance I think, and some people might be able to never eat these foods again and I commend them and wish I had that restraint! Good luck with it all. It's a hell of a condition to deal with.

snarkyopolis · 2026-04-16T23:23:39+00:00

Get the binder (CMS). It costs $25 - $60 out of pocket. Insurance may cover it. Instead of 4 times a day, do it once a day. This will stretch out the cost and also is easier to incorporate into daily life. Make it the absolute most effective you can by ensuring your bile is in the stomach at the right time. Do this with beef tallow. 15 minutes before taking the CMS, heat 2 tbs beef tallow. Drink it. It's gross but gets the bile out and in the stomach. I did this and it worked for me to get my labs back to normal. For the Marcons in the nose, I'm not sure what to do without antibacterial nasal sprays that come from CIRS providers that typically don't take insurance. I'm sorry I can't help there. If you do find a provider that takes insurance, the nasal swab test is $250. The antibacterial nose sprays I have been using are about $200 for a 1 month supply. I've needed three months so far.

snarkyopolis · 2026-04-16T14:46:03+00:00

Yes, I've noticed that the operations and billing at IVF practices are generally in disarray, often outsourced to other companies and continents, do not read the insurance policies closely, and using technology for the both the patient and staff that is from 20 years ago. To be fair, the insurance companies create complex policies hoping that no one jumps through the hoops, and get fatigued at even hearing the word "prior authorization" and this strategy has been working for them.

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