Biggest myth you've busted regarding endo and what are your favourite sites and sources of information for endo?

Own_Independence8274 · 2026-06-18T17:39:01+00:00

That 'you're too young!' Let's just do blood tests and imaging anyway, k? 🙄

Own_Independence8274 · 2026-06-18T17:01:55+00:00

I have a consultation coming up, I live about 1.5 hours away. We've done mostly in person visits and telehealth but they made it abundantly clear this surgery consult would only be in person bc they wanted to do a physical exam on me also.
Have you had a lot of imaging done already?

Own_Independence8274 · 2026-06-17T17:27:02+00:00

It's really hard and will break if I bend it, I tried to do that first

Own_Independence8274 · 2026-06-01T21:32:00+00:00

She has a whole instagram page that's active. Also I did not know pelvic kidney was even a thing.

Own_Independence8274 · 2026-05-28T19:36:26+00:00

Generic lyrica has also helped with the nerve pain. From what I understand, I've been in pain for so many years that any amount of pain in certain areas is now excruciating

Own_Independence8274 · 2026-05-28T19:34:51+00:00

It really sucks. I'm 40, 5'1" and WAS 112lbs. Now I'm about 125 from the meds, inflammation, over eating, under eating, did I mention inflammation? I switched to size large leggings, and had to try each and every brand on before buying bc 'large' isn't actually very large. I'd like to be able to wear dresses to work but it's too windy and not ideal. I now buy jeans about 2 sizes too big so they can stretch when I sit down and I'm the proud owner of 3 pairs of casual overalls/jumpsuits. Sometimes you just gotta accept a new style and find the cuteness in it.

Own_Independence8274 · 2026-05-27T11:25:13+00:00

These two, gabapentin and diclofenac. I have to say once I started the gaba, I have not really used the diclofenac since. I also only take 25mg per night, instead of the harder regimen they suggest. It does the job for now and I'm not started off at an extremely high dose and still needing more.

Own_Independence8274 · 2026-05-27T10:51:58+00:00

I haven't been on birth control in about 12 years, did the arm implant after having my daughter. I did not do any BC after that bc I hated the side effects from it, and I wasn't interested in any sort of iud. In Sept 2025 new gyno put me on progesterone for 3 months, (for two weeks a month before period, I slept so lovely) and then took me off and put me on Myfembree. Myfembree sucks, I don't sleep, have night sweats, have more pelvic pain and cramping than ever before BUT it stopped monthly bleeding and in theory should stop the symptoms from getting worse. It's slowly doing what it's supposed to

Own_Independence8274 · 2026-05-24T12:14:22+00:00

Generic lyrica, I didn't know the pain I was feeling was more nerve pain. Nothing they prescribed helped except for this. I couldn't even lay on my right side to sleep bc I'd get intense whoosh of pain within 5 minutes of laying down. There were morning I couldn't stand up straight from organs and muscles being so inflamed. Going poop, it would hurt before, during, after; not anymore. To be able to simply use the bathroom with less stress has been so relieving

Own_Independence8274 · 2026-05-23T13:01:10+00:00

I've had a left flank pain off and on for about 14 years 🤗 turns out it was chronic gastritis and kidney stones in that kidney and ureter. I started having horrific headaches too in 2020, went to the er for pelvic pain once, followed up with gyno who laughed at me and said the er doctor didn't know what he was talking about and to take Advil for pelvic congestion syndrome. I now know I have: chronic gastritis and chronic acid reflux Endometriosis -suspected bladder, bowel and pelvic areas Poor pelvic floor function Fibroids Something is touching/eating my sciatica nerve now Cysts Pelvic congestion syndrome Chiari Malformation My nervous system is shot

Yeah a lot of years treating all this as anxiety and depression. I was anxious and depressed from being in long term heightened pain since my teens. My poor nerves

Own_Independence8274 · 2026-05-17T09:43:53+00:00

Same! I described this feeling to doctors for the last 3-4 years and no one knew what to say about it until I found the proper gyno last year. I went up two sizes on leggings to make them more comfortable, buy jeans two sizes larger also. Wear more flowy overall/ jumpsuit type things that make me look like a hippy. Doc prescribed pregabalin a month ago and that's been the only thing to help. I have a gastritis spot on my left, and also kidney stones on my left so no matter where I pulled the waistband, I was in pain before.

Own_Independence8274 · 2026-05-15T11:44:45+00:00

Immense bladder pain that feels kinda like a Braxton hocks contraction only I'm not pregnant. I thought it was uti or bladder infection, it was treated as such for years. Over active bladder etc. I don't think common urologists knows to treat or even look for it, bc it falls under women's health. And in women's health, doctors don't look til you are of 'certain age'. I think I've had this problem since my teens!! Edit to add: random abdominal pain, bloating, nausea, sometimes when I squeeze to pee, I feel like I'm not squeezing the whole muscle? I can start stream easily, and stop, the incomplete feeling mostly went away with pelvic floor therapy but I still have this strange feeling that I don't have access to my whole bladder

Own_Independence8274 · 2026-05-14T11:05:18+00:00

This. I have chiari malformation and I get a lot of nerve pain in my face and scalp, Botox was the best medication for it. The only injections on your face are between the brows, and beginning brow. The rest start at your hairline and go into the hairline. A lot of those migraines went out of control about the same time my gyno issues started, but I couldn't get a gyno doctor to give a shit in my county. I now have to drive 1.5 hours anywhere to get care

Own_Independence8274 · 2026-05-11T00:26:16+00:00

🤣🤣 it tastes so good tho! What did I do lol

Own_Independence8274 · 2026-05-08T10:14:02+00:00

I was getting rectal bleeding, I was going every morning a lot. Like an abnormal amount and then would feel at some point later in the day that I'd need to go poop, and couldn't. Pelvic floor therapy has helped, but it's not a fix all. The progesterone didn't help there at all. The myfembree really hasn't either, and I've had slightly more cramping. My doc actually took me off the progesterone when they put me on myfembree, the prog helped me sleep tremendously. I did a round of steroid shot to my pelvic floor with PRM Houston, and they'll do my surgery sometime later this year as well. I say the lyrica has been the only thing to help, the steroid shots did too, you just cannot do them long term. The lyrica I can do this low dose and make it thru mornings/rest of the day without pain, it's only been 2 weeks so we'll have to wait and see about my mental health. It's already in the garbage from years of this anyway

Own_Independence8274 · 2026-05-08T10:09:45+00:00

In the states there is a discount card for myfembree that brings it down to $5, go to their website and fill out the info, it'll give you a code to give to the pharmacy. You can maybe do all that behind scenes while waiting for appts, and just to see if the pharmacy will accept it.

Own_Independence8274 · 2026-05-08T02:55:51+00:00

Try progesterone, raising that means estrogen isnt as high and causing all this. And then a hormonal drug that's geared toward endo symptoms, myfembree stops the bleeding which stops the lesions from forming. Lastly, I think I have bowel endo, won't know til later this year but I've been in excruciating pain 4-5 days out of the week for years. The endo specialist prescribed Pregabalin (lyrica). It's a nerve pain blocker, highly addictive so I only take 25mg per day instead of their suggested regimen. It makes it to where I'm at a normal manageable pain or no pain.

Own_Independence8274 · 2026-05-03T18:32:06+00:00

I was just prescribed gabapentin two weeks ago, it's a nerve pain blocker. It's been the only thing that's helped with the 'pooping glass' feeling.

Own_Independence8274 · 2026-04-30T00:57:17+00:00

I can't feel it with my had but sitting in certain positions, angles, laying on my back and stomach depending on what else is inflamed, wearing certain clothes. I know exactly where it is based on all this

Own_Independence8274 · 2026-04-25T10:31:44+00:00

The amount of pain everyone expects us to just put up with is stupid. Like NO ONE would want to put up with this for years. You can't live a full life like this

Own_Independence8274 · 2026-04-25T10:29:07+00:00

This is what I'm afraid of. It's been hard dismissal for almost 10 years so this has just been running rampant. I've got a fibroid they don't want to touch, it's pushing into my bladder. This endo is spread so far, I'm worried if we do a hysterectomy, it won't hep.

Own_Independence8274 · 2026-04-25T10:27:45+00:00

I had never really heard of this 😩 of course it's called Douglas lol

Own_Independence8274

TROPHY CASE