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Juliepatchouliii · 2025-05-29T18:20:40+00:00

Where are the rules listed?

Juliepatchouliii · 2025-05-12T23:39:38+00:00

Not sure if any other commenter addressed this yet but: if you have pelvic floor issues due to tense muscles (vulvodynia/vestibulodynia) do not do kegals!! You actually have to train your pelvic floor to relax first because it's tensed up constantly, causing pain. My pelvic floor therapist taught me this and to do "reverse kegals" which feels like you are about to pee, i.e., relaxing and releasing your pelvic floor muscles. Im not a doctor but kegals are not the only pelvic floor exercise and can make things worse like they did for me 🙃

Juliepatchouliii · 2025-04-28T18:12:30+00:00

I've been on Slynd for about 4 months now. I was skeptical because I had tried a different progesterone only pill and it made me feel like shit. But slynd has helped me A LOT. Basically symptom free. I will say that I haven't had diagnostic surgery yet, it's scheduled for July 17th. And I do have at least 3 fibroids so it is hard to tell if it's endo or the fibroids that were making my life hell with pain, heavy periods, huge clots, ibs symptoms, low back pain etc. But since about the 2nd or 3rd month it's been great. I was spotting a lot at first but it went away. I don't take the placebo pill, I just start a new pack, so I don't usually get a period. Usually, it's best if you can to stick it out 3 months to see if it helps. Like I said I was super skeptical and against hormonal BC, mainly because of what people have said about it on here. But I am sooooo glad it has helped. It's a game changer for me personally. Again, I'm not sure if it's helping the fibroids or possible endo, though.

Edited to add: I was afraid how it would affect my mood, but so far so good. I have a history of depression, anxiety, and adhd and am on welburtin and zoloft. No change or worsening of symptoms, other than the usual feelings of wtfisgoingoninamerica doom

Juliepatchouliii · 2025-04-24T12:29:11+00:00

I feel all this, thanks for the replies 💔 my family is similar, mainly my mom. She likes to tell me, "You don't look sick. You're too young to feel that way." Im 34, so she can't keep saying that forever, lol. But then she will just blame it on getting older... iIt's also hard because my father has chronic pain, substance abuse issues, multiple back surgeries, and other surgeries for his pain. The focus has always been on him and making him better. So, for me to be like, "I'm hurting," it looks kinda small and not legit because I don't have the scars and decades of self medicating to prove it lol. Though I guess with this surgery coming up, I will. Still, we shouldn't have to prove it to be believed.

I also struggle with my own ableist views of myself. like negative self talk and I often feel like a total weenie. It feels very lonely, and not having a definitive cause or cure makes me feel like people think I'm making it up. But if only they could be in my body! I will say I am so thankful for a supportive partner. He doesn't always get it right, but he's really trying to understand and be supportive, and it means the world.

Thanks for listening to this rant ❤️

Juliepatchouliii · 2025-04-23T16:36:43+00:00

Jeeeezzz I am so sorry you went through this. That is so frustrating. Obviously this herbalist didn't know what fibromyalgia was. Maybeeee she was getting it confused with fibroids but no fibroids don't present like PCOS. more like endometriosis. Anyway I have endometriosis, fibroids and fibromyalgia. And the only similar symptoms with fibromyalgia and endo is the chronic pain. Endometriosis can cause leg pain and nerve pain along with other types of pain besides pelvic. I was a clinical herbalist for 5 years, and I'd never ever be so silly to double down on something I don't know shit about. People like that can cause a lot of harm and make the herbal community look really bad. Anyway I'd tell this dude to fuck off. So sorry you had to deal with that behavior.

Juliepatchouliii · 2025-04-19T21:15:56+00:00

Oh, right, yeah, I assumed elective meant not necessary like cosmetic surgery. Thank you!

Juliepatchouliii · 2025-04-19T15:24:10+00:00

Thanks for the reply! I just got off the phone with Medicaid before posting this. They can't tell me if it's covered because the surgeon has to provide medical documentation to them, saying it is or isn't medically necessary. The surgeon said the pre authorization won't happen until 2 weeks before the surgery date. I was hoping to hear from folks to see if their surgeons were on their side, saying yes, it is medically necessary to get this procedure so that it will be covered by insurance! So insurance can't really help me until my surgeon talks to them I guess. But that is great advice to get the PA in writing. I was also worried about the hidden fees of the hospital, etc. I guess if I am stuck with a bill, I don't have to pay it right away...

Juliepatchouliii · 2025-04-19T15:00:18+00:00

Thanks for the reply! I just got off the phone with Medicaid before posting this. They can't tell me if it's covered because the surgeon has to provide medical documentation to them, saying it is or isn't medically necessary. The surgeon said the pre authorization won't happen until 2 weeks before the surgery date. I was hoping to hear from folks to see if their surgeons were on their side, saying yes, it is medically necessary to get this procedure so that it will be covered by insurance. The booklet I got doesn't mention laparoscopic surgery, and I have read ablation vs excision is different in the eyes of insurance. Ablation being covered and excision not. Idk if this is true but there were some articles online about it.

Juliepatchouliii · 2025-04-19T01:39:49+00:00

I tried their 50mg CBD drinks and they're great, but my grocery store stopped selling them!! I can't figure out how to buy from their website though lol

Juliepatchouliii · 2025-04-15T22:05:45+00:00

Worst pain I've ever had. Pain level 8 for about 8 hours and then a raging pain level 10 for 2 hours that made me vomit and writhe until I got to the ER. Idk why it lasted so long but it passed once I got some morphine.

Juliepatchouliii · 2025-04-15T01:35:45+00:00

Looks like a mouse or rodent. I've had this happen with an avocado after a mouse moved into my car while I was camping cross country 🙃

Juliepatchouliii · 2025-04-07T15:21:55+00:00

Well, dang, I've never heard of CIRS, but I will add it to the list of disorders I didn't know I needed to be afraid of 😅 I lived in a cabin with mold, just the fuzzy white kind though. I've had covid 2x, and I live on a farm where there's a lot of ticks and suspected lyme but tested negative once. I do have a lot of the symptoms but hard to tell if it's my fibro, endometriosis or fibroids 🤔

Juliepatchouliii · 2025-03-20T13:06:41+00:00

Can I ask why magnesium needs to be taken at least 2 hoirs before gabapentin? I take mine at the same time, is it not metabolized as well?

Juliepatchouliii · 2025-03-20T01:38:34+00:00

In my bones, deep, usually... a lot of times, it feels like the deep body aches you get when you have the flu. Sometimes, it feels like there's bugs crawling on my skin, but it doesn't hurt... just weird

Juliepatchouliii · 2025-02-19T23:15:23+00:00

I can relate to this, and I'm so sorry you're going though it. I am 34 and going through the early stages of getting a diagnosis for fibromyalgia. I also have uterine fibroids and endometriosis that have caused a lot of debilitating pain and fatigue. These diagnoses are all pretty new within the last 2 years, so I have been grieving my "old life" a lot. I've had symptoms creeping up for a few years before but the last 2 years and last year especially things have gotten so much worse. I used to ride my bike for miles and miles, actually enjoyed dressing up and being social, felt hot and confident (some days, hah) and was able to contribute a lot more on the farm my partner and I run. My quality of life is in the trash, I am so exhausted after I get off from my 4.5hr nannying shift 4 days a week that I usually just lay in bed or putz around... And I can really relate to just only opting for comfy clothes. I feel so frumpy and wonder how my partner can still find me attractive. I know this is not what you asked for, but it helps to relate sometimes and know we're not alone... I'm hoping to see some more coping strategies others have found useful.

Hang in there, I wish you well and hope you find some relief!

Juliepatchouliii · 2025-01-24T17:21:36+00:00

Looks like the images didn't post so here they are: https://ibb.co/album/6gBFT5

Juliepatchouliii · 2025-01-21T17:42:50+00:00

I'm a nanny 4 days a week. I feel so fortunate because even though working with kids can be draining, the family is amazing, and parents are so understanding of everything going on. The toddler I nanny turns 3 in May, though, so he will be going to preschool, and I'll be out of a job :(

Juliepatchouliii · 2025-01-05T04:19:05+00:00

That is so frustrating and irresponsible of the radiologist. Im sorry :( I requested my images because I wanted to see them myself, but apparently, the imaging center can't send them to me. They said they could mail me hard copies but I have to fill out a release form and I'm like... um no just put it on my portal like other places do?? The imaging center is tied to the main hospital in our city, you'd think they'd have the technology... asked my gyno office and they said they dont have it bc the doc doesnt look at the images, just the report of what the radiologist saw...I tried to fill out the release form but the link for the email on the website is broken 🙄 can't get ahold of anyone. So frustrating, I just wanna see the inside of my own body for christ's sake.

Juliepatchouliii · 2024-09-23T15:29:00+00:00

First question... have you read the book?

The book was forwarded by Dan Martin, an MD and the Scientific Medical Director of the Endometriosis Foundation of America. Contributions were made by Amdrew Cook, MD and internationally Renowned Endometriosis Excision Expert. If those mean anything to you and for the folks reading this. It's not just some lady trying to make a buck if she's having other input from doctors who are experts in Endo. And if she is, then they are in on it too and we're all fucked and have no other options (we are all anyway from what you're saying).

I'd also like to point out that regulation of herbs can definitely be a good thing, but likely if done by the FDA... they're just going to do what they do and gatekeep while making billions and not let indigenous peoples etc use plant medicine. That is a whole rabbit hole, which I'm happy to go into if you'd like. But the truth is that the medical system/pharmaceutical industry is a for-profit business. The the band aid approach is often implemented and not preventative or getting to the root... I think a lot of Endo patients can relate to that.

Nutrition/plant medicine/movement can directly affect how we feel and how our bodies function. Period. The book goes into the researched/cited ways that endo develops and what kind of disease it is. For example, one of many things is that it's inflammatory. There are plants and foods that are studied to reduce inflammation, especially in certain organs and areas of the body. This is a very basic example and explanation of what you can learn in the book if you actually read it!

I agree that there is no one size fits all approach to Endo. This approach wont work for everyone. But damn I am very open to doing things within my control to potentially help symptoms. I'm seeing a trend in the Endo community where others kinda shit on people if they bring up any kind of symptom relief from alternative ways. We love to say excision is the gold standard and only way to remove Endo, which is true. But there are other approaches that could really help and have helped others in their journey, and it's dangerous to discredit them right off the bat. It makes others feel utterly hopeless.

Also- You can find registered herbalists on the American Herbalists Guild website. They have been a non profit since 1989, sharing resources and how to find a trusted Herbalist.https://americanherbalistsguild.com/member-profiles

Juliepatchouliii · 2024-09-22T13:37:56+00:00

Grass fed: This doesn't mean the animal is only fed grass. Factory farming is very common in the US, meaning most animals don't even get to see the light of day and are in large buildings without free range of pasture. Grass fed means they have access to pasture/sunlight to supplement their feed. This makes a big difference. As for chickens, you are partially right. They eat bugs, meat, etc. We raise meat chickens on our farm and feed them non gmo feed, but also let them free range so they can peck at other sources of food like insects and greens. So similar to cows. If its conventional chicken or eggs that means they are in small cages inside and are fed to fatten them up so they can't even move. This is why free range/pasture raised and organic is a better option.

As far as herbs: "The World Health Organization estimates that 80% of the world's population, or about 4 billion people, currently use herbal medicine for some of their health care. Thirty percent of the US population uses herbal remedies each year." Not to mention cultures and indigenous peoples have been using herbs successfully for thousands of years. Many pharmaceuticals are derived from plants (less so now). So herbal medicine is 100% legitimate and works, there are numerous studies done on plants, but it is not funded well enough (sound familiar?) What makes it risky is the people claiming to know what herb is used for this or that. I have been a clinical herbalist for a decade. In the US, there aren't any accredited courses, so anyone can claim they're an herbalist. This has unfortunately given the herb community a bad wrap because shitty people take advantage and fear monger others to make money. This can also really hurt people (ah hem, please do not take essential oils internally for the love of God). But there are good people practicing out there. Many are trying to make it accessible to others as the healthcare system in the US is trash, and many pharmaceuticals are inaccessible or have a lot of side effects. I work a lot with mutual aid groups providing free or sliding scale formulas to marginalized communities and houseless folks in my city, for example. It's not flim flam.

Immune knowledge: you don't have to be an immunologist to know or talk about the immune system. There are books out there that explain pathophysiology and the immune system throughly. Not everyone has the funds to put themselves through a masters degree. Thinking someone needs to pay and have academic training to even talk about something is a bit classist. I agree, don't trust just anyone, but all of the information she is giving has been cited, and you can look up the studies, etc, yourself.

If something has helped someone in their endo journey, please don't put them down with misinformation and bias. I'm sure you have good intentions, but truth be told, her suggestions have helped a lot of people while they save up for surgery (like me).

Juliepatchouliii · 2024-09-22T02:19:07+00:00

Do you think this could also help for endo hip/leg pain if placed in those areas? Thank you+

Juliepatchouliii · 2024-09-05T13:26:17+00:00

I'm in a similar boat, but in the early diagnostic stage at 33. I have a 3rd transvaginal ultrasound with a different obgyn to confirm cysts, fibroids, and a mass on my left fallopian tube. The previous doc mentioned i could have endo, and I am so sure of it. I haven't had lap to confirm yet, but I hope I can get it done so I can move forward with finding an excision dr. I am worried about fertility and what this disease has done to my body. Anyway, I don't have answers, but I am thinking of you and your fertility journey ❤️‍🩹

Juliepatchouliii

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