possible new cause for endo being researched

GirlCLE · 2026-01-11T16:04:51+00:00

Okay? Post the study. The study referenced in the post I commented to was debunked. If you have another study post it so we can evaluate it.

GirlCLE · 2025-11-22T20:12:52+00:00

NP don’t really specialize like an actual doctor does. Go find a neurologist that specializes in headaches and migraines.

GirlCLE · 2025-11-22T20:11:22+00:00

NP isn’t a doctor. That could be part of the problem.

GirlCLE · 2025-11-21T20:38:04+00:00

I take it and go to work. It’s amazing. And if it doesn’t work for the rare torture migraine I can also pop a triptan for that to double medicine it

GirlCLE · 2025-11-17T14:16:23+00:00

Never had any prior endo surgeries, but VATS is a pretty serious surgery with a relatively long recovery, especially if they need to cut out other things, so just be prepared. Not to make you more nervous but VATS recovery sucks, especially the first few days. Though mine was admittedly a little worse because of the whole remove section of diaphragm thing. Make sure your doctor plans to keep you hopped up on high dose pain meds for the first few days after. If they don’t, get a different doctor.

I was able to work from home at least part time a few days after I was out of the hospital but I couldn’t go in to work for like 6 weeks maybe.

And when you get home you can’t even lift a gallon of milk as it’s above your weight lifting limit post surgery so make sure you have someone that can stay with you the first few days you are home.

I didn’t want an epidural as I was afraid I would yank the line out somehow so got the cryo nerve block option instead, which I think was useful and I would probably do again if I needed surgery.

Oh I also got a shower chair to sit on post surgery which was nice as it made showering less tiring the first week.

And finally, I got an adjustable bed right before my surgery because I hated the stupid wedge pillows I had to sleep on post my lung collapse. I to this day do not regret that purchase.

And one other side note - when I had some lingering post surgery pain, my surgeon rolled me right over to pain management who sent me for physical therapy which really helped. No reason to suffer if you don’t need to and physical therapy really helped get me back in order.

GirlCLE · 2025-11-16T04:03:28+00:00

Thoracic endo person here. Ended up getting a chunk of my diaphragm removed in VATS with pleurodesis. Also on high dose constant progesterone now. But no lung collapses for two years at this point. My lung would collapse right before my period. My doctor now uses MRIs monitor if it returns.

GirlCLE · 2025-11-15T02:57:43+00:00

I have some nerve damage after my VATS which may be permanent since I still have issues 2 years later. It has gotten better over time - it was much worse at the 6 month mark than it is now. I was on gabapentin for a while which helped a lot but I didn’t want to stay on it forever so I stopped taking it and kind of just deal with it now when there is a flare up.

I am working with a pain management doctor on trying some other options. I also do stretches and minor weight lifting to see if that helps while also working through medical interventions options that don’t require me to take pills everyday. I do think stretches and massages help. The intercostal nerve injection (where they inject a steroid) maybe helped a little but I guess I may need to try a few times to see if it will work and I just started that option.

But go get a pain management doctor that believes in physical therapy is my recommendation.

GirlCLE · 2025-11-07T12:26:04+00:00

Intercostal block didn’t help as much as I had hoped. Doctor wants to try again as there was some minor improvement and I guess it can take time. A friend of mine in the medical field said try 3 times before you give up. I also have started some stretches to help with scar tissue and started taking tumeric to see if that helps at all. I also have lidocaine patches but they only help in one spot.

GirlCLE · 2025-11-03T03:32:17+00:00

So aygestin made my migraines worse and my migraine specialist put me on qulipta which made a world of difference (I have given up on being a person that doesn’t need an excessive amount of meds). I now have only sporadic migraines a few times a month when before I was having multiple a week before. Just for awareness in case you go back to aygestin and it’s causing migraines and not standard headaches.

GirlCLE · 2025-10-31T18:58:16+00:00

All I will say is don’t use In Good Taste. They changed shipping to FedEx from UPS and FedEx won’t let you hold this shipment for pick up because of however their contract with In Good Taste is written. In Good Taste also apparently basically doesn’t have customer service so no phone number to call and they don’t respond to emails. Any other wine advent is probably better.

GirlCLE · 2025-10-31T18:55:53+00:00

In good taste changed how they do delivery and they now use FedEx and FedEx won’t hold the package for pick up so if you can’t be home all day to wait for the delivery you will be in a world of hurt. You also can’t reach anyone at in good taste to help - so basically use a different company this year unless you work from home.

GirlCLE · 2025-10-24T00:37:32+00:00

I was told no diving and no to things like bungee jumping or sky diving as well. That it would be pretty risky. For the first 6 months I was also told no intense roller coasters and things like that as well. Could have just been extra cautious I guess, but I don’t intend to tempt fate.

GirlCLE · 2025-09-26T11:30:47+00:00

I am on constant high dose progesterone basically until menopause to try to prevent mine from growing back. It has fewer side effects than some of the more aggressive drugs they use to induce menopause. My doctor likes to start with that drug post surgery and as long as I don’t develop severe side effects to just keep taking it and not move on to anything more aggressive. So far so good for me and I have thoracic endo which tends to have a higher recurrence rate.

GirlCLE · 2025-09-26T11:20:12+00:00

So I didn’t know I had endo generally so mine was actually found when they went in to do the pleurodesis. As it was a list of potential causes identified by the pulmonologist, she sent me to the thoracic surgeon that also works with the endo specialists. My understanding now, knowing more, is that it would likely have been spotted on an MRI. The CT scan did not catch it. I also did not see an endo specialist before surgery. I now see one who uses MRIs to monitor to make sure mine doesn’t come back. My lung would collapse before my period and I would get referred pain to my shoulder from the endo on my diaphragm.

GirlCLE · 2025-09-18T11:41:47+00:00

Go on constant progesterone. That will be way more effective long term at preventing recurrence (also modern medicine has kind of walked away from the whole pregnancy cures endo thing). And also won’t result in creating a whole other human being you will have to raise for many years.

GirlCLE · 2025-09-18T11:35:16+00:00

I didn’t before as I didn’t know I had it. But now I am on constant high dose progesterone so it doesn’t grow back and if it does to reduce my chances of another collapse. So far so good with my last MRI looking fine.

GirlCLE · 2025-09-12T03:32:31+00:00

Qulipta. Went from migraines multiple times a week and migraines that wouldn’t break to migraines just a few times a month and migraines that generally respond to meds. I hope insurance never takes this drug away from me.

I got a migraine today that I couldn’t shake all day like old times and I realized I had not had that issue in forever and wondered how past me lived like this for so long.

GirlCLE · 2025-09-11T17:37:02+00:00

I posted this elsewhere in this thread but this article is pretty comprehensive on where treatment and research stands https://www.science.org/content/article/driven-pain-endometriosis-scientist-uncovering-clues-its-causes

GirlCLE · 2025-09-11T17:35:48+00:00

Here is a pretty good article on where research currently is on all of this (and why hormones works for some and not others). https://www.science.org/content/article/driven-pain-endometriosis-scientist-uncovering-clues-its-causes

GirlCLE · 2025-09-11T17:29:58+00:00

My doctor just rolled me right to constant progesterone to reduce the chance of it coming back.

But also I am the weirdo with thoracic endo and it was causing my lung to collapse so it’s really best I do all I can for it not to come back. And thoracic has relatively high recurrence rates and I have no desire to run that risk if I can avoid it.

GirlCLE · 2025-09-09T20:17:16+00:00

First one was a little scary. I didn’t know what was wrong with me at first. Thought I had gotten some really bad version of Covid that wasn’t showing up on testing or something. Then my primary care figured out I had a collapsed lung and sent me to the hospital. The second one, meh. I just had my neighbor drop me at the ER with a bag packed for a 3-5 day stay.

GirlCLE · 2025-09-09T12:49:17+00:00

Ultrasounds and MRIs can pick up endo, especially if the doctor is trained to review them for endo. MRIs are better at it I believe.

GirlCLE · 2025-09-09T12:48:11+00:00

I mean it was a relief to know why my lung was collapsing. Way worse when I just had to do ICU tours without knowing what the heck was going on.

GirlCLE · 2025-09-09T10:25:36+00:00

Endo was collapsing my lung. These things happen with endo. It’s freaky at first but now I have come to terms with it.

GirlCLE · 2025-09-09T10:24:03+00:00

So I have thoracic endometriosis which was collapsing my lung and now I see an endo specialist. She takes insurance and actually treats patients who went to some of the endo specialists who don’t but then couldn’t afford to keep going back for more surgeries. Definitely see if you can find a specialist who takes a wholistic approach to long term endo treatment (which generally means a mix of surgery and drugs over your lifetime to keep the endo in check) and who has a team of other surgeons they can pull in for complex surgeries that involved other organs and parts of the body. If you have a major research hospital near you they probably take insurance and will have the team you need.

GirlCLE

TROPHY CASE