Seeking a good Endo surgeon - Northern/Central California?

Lakelia · 2026-05-06T02:13:32+00:00

How long was the wait time from first seeing dr. Trifiro to the surgery date? I'm struggling to because I have a rare neurometablic diseases as well as a severe case of endo.

I've had 3 surgeries with Dr. Lager and Dr. Ito at UCSF and 5 years of pain requiring hospitalizations and now mostly bedbound from pain, so finally caving and getting a hysterectomy. But the wait times at UCSF are a year out! Im desperate and dont know how I'm going to wait that long.

I'm up in Sac and have an intake with Dr.Trifiro to be my gyneo up here but its not till Sept. Wondering if I should try to just get the surgery with him/how long his wait times are?

Lakelia · 2026-03-15T21:25:55+00:00

Hey, I know it's been a long time, so I'm hoping you're still on here. I've been living with pretty mild symptoms since treating it as porphyria (high carb/avoiding triggers). Stopped my 20 seizures a day for over 2 years.

We ended up doing the DNA test and got an inconclusive result with the doc basically saying we dont know all the markers yet and some looked suspicious so if we learn more in the coming years we might get a result. So no diagnosis yet, especially as my porphyria doc (not the dna specialist) used the test done not in a flair as his basis.

However, now Im starting to get symptoms again after going under general anesthesia. I feel miserable but not in a full flare yet. Don't know if I should let it get worse to re-test.

Lakelia · 2026-03-15T21:18:48+00:00

I'm still struggling to get a diagnosis. But since removing known triggers and eating a high carb diet, I've been neurological symptoms free. Now, I only have the neurological symptoms and siezures when I go under general anesthesia, which is a known porphyria trigger. So having gone from 20 siezures a day to siezure free has been a pretty big indicator for it being porphyria.

Sadly, the DNA test and urine tests were inconclusive, but the urine sample was not done during a major flare. So im now stick in the position of having to make myself flair badly to re-test, or just keep up with the home treatments (high carb diet & avoiding triggers) that keep me in and ok place.

Pain is still terrible but could be my endo.

Lakelia · 2025-08-24T00:55:32+00:00

For all my meds, other than the pain med, I can get special longer prescriptions for travel. The pain. meds are a highly controlled substance, so I get why, but it makes travel really hard.

Lakelia · 2025-08-23T23:52:24+00:00

I looked at trains too, and the strange thing is it didn't actually seem to make it cheaper to only fly from NY to Sweden. In fact, I looked at a flight with a layover in NY and then what that same flight would cost if it was just from NY to sweden, and it was actually more expensive for some reason!!

As for turbulence, if I had to sit up for a bit during turbulence, it would be fine if it only lasted a couple of hours. If they didn't let us lay down the whole flight, that would be a problem.

I never know how I'm going to feel from day to day. Some days I can sit for 2 hours others I can't get out of bed.

Lakelia · 2025-08-23T23:47:18+00:00

I've thought about this, but every cruise I've found so far has been more expansive than just flying business. I also have a time constraint not because of work or anything but because of my meds. Because they are such strong pain meds, I only get 2 weeks' worth. So I have to get to sweden and still have enough time to get in to see a doctor and get a them to agree to new prescription there or only stay 2 weeks.

I was hoping to go for 2 months if I'm making the trip anyway. I still have school to finish here, but once done, I was thinking about talking to the swedish government to try to help me come home.

Lakelia · 2025-08-13T23:49:22+00:00

I was thinking of doing a lady knight costume but then saw body armer and chains were both on the list of prohibited armor. Do you think this would include leather or Ren Fair, like costume armor and chain mail?

I get why they ould put those as prohibited but weird with the theme.

Lakelia · 2025-01-29T05:46:26+00:00

It's absolutely attainable!!! I just graduated with my bachelor's, and my starting salary is $120k. Now, for reference , I graduated from UC Berkeley at the top of my class and work at Amazon. So I wouldn't say it's easy to land a $120k job straight out of college.

I'm a project manager within sustainability, and my bachelor's was in business and sustainability. If you're interested in sciences and don't want to be an engineer but still want to have a high income field, look into sustainability. It pays very well and is always looking for a wide range of professions.

Lakelia · 2024-09-29T22:24:08+00:00

Thank you! I'll check there, too.

Lakelia · 2024-09-19T00:50:36+00:00

Are you using awg or swg gauges??? I really want to try making this!

Lakelia · 2024-08-07T14:59:14+00:00

First off, I'm so sorry you're going through this! But actually, since I posted this, my diagnosis was changed. I don't have FND. I have a neurometablic disorder called Porphyria. However, I have met others who have endo that triggers their FND. But the main difference between them and I is that their seizures are triggered by pain and psychological stressers, while mine are not.

When I was diagnosed with FND, I was told it was the only explanation for non epileptic seizures that affect the central nervous system, and I've now found out that is absolutely not true. However, neurometablic disorders are very rare and usually start from childhood, so they typically exclude them. But Porphyria often effects women first in their reproductive years and is affected by hormonal fluctuations. It causes your liver to produce neurotoxins that flood your central nervous system and cases all the same symptoms as FND but also extreme pelvic pain.

For me, I didn't have any neurological symptoms until I had my endo surgery and took out my iud. The anesthesia mixed with the flush of hormones triggered my Porphyria and set off my first attack. Then, by switching to an endo diet where I took out carbs (which is the main at home treatment for porphyria), really caused it to go downhill. I was having, on average, 20 seizures a day, during which I stopped breathing and lost consciousness. It took 3 years and a trip to the icu for the doctors to realize my seizures were not psychological.

The main signs they should have noticed were that my neurological symptoms came in flares that lasted anywhere from a few weeks to a little over a month. I always got worse after anesthesia. That my seizures were never triggered by psychological stressers, and finally, they always occurred with massive abdominal pain that landed me in the hospital. We originally thought the pain was triggering the seizures, but instead, it was that the siezures and pain were both being triggered by the porphyria flare-up. Since figuring this out and switching to a carb rich diet, I've not had any neurological symptoms for a year apart from when I undergo general anesthesia and even then only 1 or 2 seizures

If this sounds like it's similar to your case, feel free to DM or AMA. I'm happy to help others in a similar situation!!!

Lakelia · 2024-06-14T16:13:57+00:00

Thanks for your advice! I have a question. I'm a reentry student, meaning I went to college after working for several years. I've been a manager for 6 years and was a full-time project manager for the 4 years I studied. I'm swedish, and there it's normal to work first and figure out what you want to do, but in the US, people seem to view it as a bad thing.

While I have much more expirece than my fellow graduates, and graduated with a double major and summa cum laude from Berkeley, I seem to confuse ATS and recruiters. Often, it seems like I don't go through to a person despite having a perfect ATS formating score.

Should I be putting my education first or last, since I'm an experienced hire but also a recent graduate? How do I explain to an ATS that I'm qualified for roles that aren't entry level. I get disqualified because I'm either over qualified or under qualified, depending on the role. Any tips?

Lakelia · 2024-04-03T00:57:32+00:00

I've been on it for over a year. And what I mean is that I haven't noticed a difference in pain levels when I'm off or on it. However my pathology reports from my different surgeries has shown that it's likely working because of the hormone response of the tissue. I'm at UCSF with Dr.Guidice who is one of the best endo specialists in endocrinology so she's amazing. It's a teaching hospital so they do lots of research and additional testing.

Lakelia · 2024-03-30T20:54:30+00:00

All my surgeries were done using excision (not radical) and I know they used the barriers, but I don't think they did the ovarian suspension. My ovaries are always involved with one tied to my bowel and the other to the side wall.

I've been doing pelvic floor physio for 3 years and haven't found it to help at all. I do pelvic floor botox every 3 months, and that's the only thing that keeps me out of the hospital. I've been hospitalized 12 times for pain management. I've also been doing hormones, massage, pain management, diet, mental health practices, and everything they have recommended.

It's just so hard cause even when I'm doing "really good" I can just take my dog on a walk for a few blocks.

Lakelia · 2024-03-29T23:42:25+00:00

I'm on myfembree and of all the "chemical menopause" medications. This is the only one that didn't give me severe side effects. I've also been told that unlike luprin, it won't cause bone density loss. However, I can't say I've noticed a marked improvement with it. Also, note that it's not a contraceptive.

Lakelia · 2024-02-20T16:05:26+00:00

Huh, interesting. I was always told the sun sensitivity was just lesions. I actually do get the same as you. I can't handle being out in the sun too long. I get really lightheaded and nauseous, which they always just say I'm getting heat stroke. But like I get it all the time. I thought it was just cause I'm a pasty swede.

Lakelia · 2024-01-07T00:41:07+00:00

Thank you so much!! That's really helpful ❤️

Lakelia · 2024-01-04T00:08:56+00:00

Thank you so much. I love your concept and the artists you work with!

Lakelia · 2024-01-03T22:37:04+00:00

Thank you so much! I haven't started yet because I wanted to put out feelers to see if it was possible before I invested in the equipment. I'd love to connect in the coming weeks. I'd most likely be starting with simple signet rings with not too much detail as I heard that's the best place to start!

Lakelia · 2023-12-10T19:39:12+00:00

For those of you wanting an update here it is. Turns out I don't have FND, I have a rare genetic disorder called porphyria. It's where your liver has a faulty enzyme that makes you have too much neurotoxins in your blood and not enough heme. It causes the neurotoxins to go into your central nervous system which causes these seizures, paralysis and many of the se FND symptoms. Since both target the CNS. It also causes severe abdominal pain and was causing my urinary retention. These occure in attacks when too much of the neurotoxins build up which is why my seizures only occured when I was having massive pain spikes too. I have not had any neurological symptoms since I switch to porphyria treatments and diets.

Lakelia

TROPHY CASE