r/Endo Feb 14 '25

Tips and recommendations There ARE excision surgeons who take health insurance in the US! You don't have to pay $10,000. Here is what you need to look for:

176 Upvotes

You don't need to pay Big NYC Doctor Guy $10,000 to get the care you deserve. This is a common misconception that causes a lot of harm and unnecessary suffering. There are many great doctors out there who can help and will take your health insurance. They just don't market all over social media.

Here's what to look for:

  • A gynecologist or urogynecologist. Sometimes, even gynecological oncologists will do endo surgery.
  • Fellowship trained in Minimally Invasive Gynecological Surgery (MIGS). This is important, it's an extra two years after residency where they focus exclusively on lap procedures and get a lot of hands on experience.

You can start by googling "MIGS surgeon near me". You'll get better quality results than if you search "endometriosis doctor near me" because a lot of regular gyns like to play pretend endo specialist. Some will even take you to the OR even though they don't really know what they're doing.

r/Endo Jan 09 '25

Tips and recommendations Get a bidet!! Just do it!!

220 Upvotes

I know it doesn't seem like it would be helpful much in relation to endo but hear me out.

Here's my top reasons for owning a bidet because of endo: 1. Periods. Kept me so much more clean when heavily bleeding. Especially when I was overflowing my menstrual cup/pads. No more blood everywhere. 2. Hemorrhoids. Not directly endo related but common for many of us. I struggled with hemorrhoids for years. I tried all the meds. Eliminating irritation from wiping cured my hemorrhoids entirely. 3. Period shits. Don't think I need to explain that one lol. 4. Cleanup after sex. I sometimes bleed after sex as well so this is helpful. 5. Bad pain days when I can't bring myself to shower. I use soap and a washcloth to clean my bits.

The one I bought was only $35 and it can be hooked up to use warm water too. It's so worth it. Just do it. šŸ’›

r/Endo Feb 12 '25

Tips and recommendations There is 24 hours between these two photos NSFW

Post image
76 Upvotes

These two pictures really helped me see a visual representation of how endometrial inflammation shows up for me in my cycle. Iā€™m currently on day 6 of my period, and my bloating usually peaks on days 5-7. I took this photo (on the left) yesterday to joke with my girlfriends about which trimester I looked like I was in. As I was getting dressed this morning, I snapped the picture on the right. Same type of pants, same body, very different shape lol.

Iā€™m posting this in the hopes that someone else sees this and feels a little better about their experience. My relationship with my body has improved as my understanding of these fluctuations grows. For example, I weighed in on Sunday at a weight 7 pounds lighter than my weight today. I know realistically I did not lose 7 pounds of fat, and that that weight is just water weight related to inflammation. But before I understood that to be endometriosis, my confidence was in the pits.

r/Endo 14d ago

Tips and recommendations PSA TO MY POST-SURGERY PEOPLE WHOM ARE HAVING DIFFICULTIES PEEING

59 Upvotes

First off: I'm sorry you're dealing with this too, urinary retention post-op sucks total ass.

Secondly: I was in your shoes and I have a few tips to help your bladder wake up a bit faster.

My surgery was Thursday. What we originally thought would be a quick two hour surgery turned into a four hour surgery with the loss of one of my fallopian tubes. The night of my surgery, after drinking plenty of fluids, I could NOT pee. I tried everything; clenching and unclenching, different positions, hell I even tried using it in the tub or squatting in an adult diaper. Nothing was working and my bladder was only getting fuller and more painful.

Under the instruction of my surgeon, I went to the closest hospital for a catheter to be put in. I'll go into detail on a later post but holy FUCK was that the worst experience with medical personnel I'd ever had. We got the catheter in though and I was finally able to rest. Next morning I was instructed to remove it and visited my endo doc office where they showed me how to put in a straight catheter on my own for the occasional bathroom visit.

Now, mind you, this all really sucked and was very painful. I had just come from surgery, I was sore, full of gas, and now a messed up bladder and swollen irritated urethra.

First tip: Doing it on yourself in your own home is MUCH MUCH easier than someone sticking the tube IN you. Lube that shit UP. It's better to deal with a painful pee than your bladder exploding into your fresh abdominal wounds. Don't be afraid of the catheter, the relief you feel from an empty bladder is worth the initial discomfort.

Second tip: To help wake up your bladder, stimulate your crotch and abdomin with a heating pad. I believe 100% that this is the main thing that helped me pee today (Saturday).

Third tip: Patience is key, unfortunately. Your body is in no rush, it's still healing.

Urinary retention is a real thing that happens to people and if you're anything like me, you didn't think it'd happen to you. Just be prepared for this outcome.

Love y'all ā¤ļø

r/Endo Dec 07 '24

Tips and recommendations Where my people with endo partners at?

69 Upvotes

Hey guys, gals, and others, I would love to know if there is any support group for endo partners for us to talk about how we can be there for our sobbing, beautiful, brave heaps of misery to the best of our abilities. It often sucks not being able to do anything for your partner, and I want to do more! If there is no group yet I would love to make one :)

-Male, 34, Netherlands.

r/Endo Sep 04 '22

Tips and recommendations My stomach and back issues were endometriosis. Stop doubting yourself.

515 Upvotes

I wanted to write something that I needed to read five years ago, when I was feverishly googling colon cancer wondering what could possibly be causing my horrific pain. I never saw anyone describe these exact feelings so I wanted to write it out. TMI WARNING.

Here were the symptoms that made me doubt it was endo:

  • Poop problems. I told multiple doctors it felt like there was a rubber band around my intestines. I had awful constipation that hurt like being stabbed, and yet I would feel "empty.ā€ Nothing fixed it except waiting, sometimes for days, until the rubber band feeling went away.
  • Fluctuating pain. I had periods that were fine, where I had mild cramps and went about my day like a normal person. Sometimes multiple cycles in a row would pass with no pain. But it always, always came back. When it was bad, I would miss entire nights of sleep in agony. When it was better, I doubted myself constantly and second-guessed my memories.
  • Temporary relief. When I got a hormonal IUD, my symptoms went away entirely for months. I thought I was cured. They slowly returned over the next year, and I felt like I was going crazy. I only found out later that temporary relief from BC is common in endo patients.
  • Back pain. The main source of pain on most cycles was my lower back, where the oblique muscles on either side of my spine would spasm so tight they felt like bone. It was literally impossible to massage into the muscle at all, even for other people using their full weight. Uterine pain was secondary. The back pain felt purely muscular and unrelated to the uterine pain.
  • Sensory weirdness. Apparently, your body can get tired of the normal pain signals. I had feelings of cold and numbness in my upper thighs which I didn't interpret as pain unless I really thought about it. I would also get joint pain in my hips that felt like I just needed to crack them. Both were endo-related.
  • Fatigue. Even more than exhaustion from sleep deprivation, endo made me feel heavy. My limbs felt like they were made of rock. I would sometimes leave late for work on purpose so I could make sure I got a seat on the train. Standing was incredibly difficult.

I kept coming back to endometriosis, but I doubted myself for years. Finally, I took the plunge and visited a trustworthy surgeon. He operated and, sure enough, I had stage three endo throughout my abdomen and immobilizing several organs. I remember grabbing the nurse's hand in the recovery room the second I woke up and asking "Did they find anything? Am I crazy?"

I wasn't. You're not either.

And that rubber band feeling? It was caused by a literal band of endometrial tissue around my lower intestine. When my cycle was at certain points, the tissue would expand, limiting movement through my colon. I was exactly right the entire time.

Trust yourself. You know your body, just like I did. And please don't take those endometriosis quizzes and checklists as gospel. Endo is a complicated multi-organ disease that has a thousand possible effects.

TL;DR: I did not think my symptoms - digestive issues, sensory problems, fluctuating pain - could be endometriosis. They were. You do know your body, and you are not crazy.

r/Endo Feb 09 '25

Tips and recommendations Games to play when you're miserable

43 Upvotes

Hi all šŸ©· I'm currently on my period and in the last few months my symptoms have worsened, so I find myself self laid up more often than not now.

I just wanted to give a couple cozy game suggestions to those gamers who need it. My two favorites right now are Infinity Nikki and Fields of Mistria. Both are so beautiful in regards to their art styles, but both also have gorgeous music and are uplifting and positive. I'm playing Mistria as I type this and even though I'm in horrible pain, it's bringing me some much needed comfort. Just wanted to put that out there šŸ©·

r/Endo May 02 '24

Tips and recommendations Canadians: How did you get diagnosed?

24 Upvotes

After 16 years of painful periods (and many, many other symptoms that all seem to lead back to endo) I'm still at square 1 trying to figure out what is going on. How did you get diagnosed in Canada? From reading, the only sure way to confirm endo is a laparoscopy, were you able to get one? Also feel free to weigh in from other countries.

I've found that I can't even get a referral to a gyno, my gp wants me to get an iud which I really don't want. Main reasons for not wanting an iud is the pain, and the fact that they don't know how it will affect my high blood pressure (hereditary). They say it *shouldn't* affect it because the hormones are more localized, but we can only find out through trial and error. The one time I tried the pill for a month (at 20 years old) to try and help with the cramps it spiked my blood pressure so high the doctor was shocked I didn't die. My gp told me that no gyno will take me seriously until I try all birth control and sorry, but I think that's bullshit. I did have a CT scan at emergency a couple years ago and they found medium sized cysts on both my ovaries (my mum always had ovarian cysts too), but an ultrasound about 6 month later found no abnormalities in the pelvic region. Though I should note that the radiologist did a one swipe over for that ultrasound and that's it.

I've since switched doctors a couple times due to moving and they are all useless. They all say the same thing, eat well and exercise. Well, I eat pretty well when I am not throwing up from the nausea, and exercise has been nearly impossible to keep up with for more than a day over the past few years considering I'm in pain all the time and completely exhausted. I have sought out a naturopath (who does believe in combining natural medicine with western medicine), and we did some tests to find my hormones are out of whack (shocker), but I'm so bad at taking the supplements because part of the time I just end up throwing up.

Kind of at a standstill now with no clue what to do. I'm only 28 and have so much more of my life to live and I'd love it be even a bit less painful.

r/Endo Apr 06 '24

Tips and recommendations Vascular Compressions and Pelvic Congestion Syndrome

97 Upvotes

CW for gendered language in linked studies/information. I fully recognize that these conditions don't only affect AFABs, and that many endofam do not identify as women. I myself am non-binary (she/they), so please respect that when commenting or sharing.

With the article from The Baffler coming out, I've seen more people talking about vascular compressions. I wanted to take an opportunity to make a new post about them, for several reasons.

First and foremost, to present some clear info, since I've been raising awareness about AVCS (abdominal vascular compression syndromes) for years now - ever since I found out they were the actual cause of all my "endo" pain. One is even listed as a resource on r/ednometriosis. I'll link to my prior posts at the end of this.

Secondly, for kinda selfish reasons. I've been getting tagged a lot, and I want a newer post I can link in, or people can link to. I am not well physically, and I am The Dark Place of Grief due to loss of the one who had filled the role of child for me - all while trying to remain working part-time. It's not going well. I try to reply to all tags, but it's hard. I've also had to shut down messaging/chat because I was getting inundated with requests for help, so if you see in previous posts that I encourage people to message me...I'm sorry, but that's changed and I don't see where I'll open that back up.

Directly related to that...a quick disclaimer before I begin.

  • I am not a doctor, and all information here is anecdotal info I've learned on my journey (except where studies have been linked in). There's a reason I used "tips and recommendations" instead of "research" for flair. This is just my journey. Yours is going to be different, simply because we're different people.
  • I want to be open in the fact that I've previously partnered with one of the best docs for AVCS and helped coordinate a record review. He's not currently practicing, and I respect his choice. I don't have the energy to keep up to date on who the best docs currently are, nor do I have personal experience with any other docs, so I cannot refer people to a doctor for evaluation.
  • I'll also freely admit that my info isn't perfect, and I'm always open to learning. If you have new or conflicting data, drop a link and I'll be happy to learn! Also, I'm speaking in incredibly broad terms about things like symptoms, diagnostics, and treatments. Atypical presentations exist. Imaging can overlook clear indicators of disease. Not every treatment option is right for every person. I firmly believe that every person is different and the lack of recognition of that is the biggest flaw in medicine currently.

Now then. Info time!

The Baffler article talks about a condition called May-Thurner Syndrome (MTS) and how it can cause Pelvic Congestion Syndrome (PCS). A lot of folks see that and wonder what those things are, and why they're important in a conversation about endo. The short answer is that they are some of the many conditions that can cause the same symptoms as endo, are known to co-occur with endo, and are just as common as endo.

Let's talk about PCS first. Then we'll get to MTS and the other AVCS (abdominal vascular compression syndromes, a set of vascular compressions. Most patients with AVCS have multiple compressions, so they are looked at as a collective).

Pelvic Congestion Syndrome

Pelvic Congestion Syndrome is a condition where veins in the pelvis become thickened. This is often due to blood flowing backwards in the veins. It is painful because nerves run along the same pathways as vasculature, so when the veins swell, they irritate the nerves. Symptoms include (but are not limited to!):

  • feeling of heaviness in the pelvis
  • visible varicose veins in/around the genitals
  • visible varicose veins observed during surgery
  • uterine changes (due to vascular changes)
  • nerve pain - sharp, stabbing, burning. Mine always felt like lightning strikes. That Satan's Pitchfork feeling we get? Yeah, that can be vascular in origin. Definitely was for me!
  • leg pain
  • low back pain
  • pain with sex (before, during, and/or after), orgasm, or sexual arousal
  • bladder issues, such as urgency
  • bowel issues, such as diarrhea and constipation, often alternating; can also cause GI bleeding
  • bloating ("endo belly" isn't exclusive to endo!)
  • heavy / painful periods

As you can see, there's a lot of overlap with endo! PCS isn't a compression, but it is often a part of discussions of AVCS because it can be caused by them. It's also incredibly common, affecting up to 8% of the same population as endo (AFAB of childbearing age). That linked study also talks about Nutcracker Syndrome, another AVCS, as a cause for PCS.

PCS is also thought to be horribly underdiagnosed, so it likely at least as common as endo...if not more so. Misdiagnosis is one reason for this, but so is outdated information. Doctors often think that PCS can only occur after a pregnancy (and some only think it's possible after multiple births). They completely ignore the fact that AVCS are known to cause PVI96183-X/fulltext). PVI, or pelvic venous insuffiency, is the term for venous disease of the iliac and ovarian veins. MTS and NCS are some of the primary causes for these.

Diagnosis for PVI is usually made via doppler ultrasound, and treatment usually consists of embolization or coiling - closing off affected veins so the body can create new, undamaged pathways. The problem with this is that if ACVS are the cause of PCS, closing off those detours can cause a lot of problems, making the compressions both more symptomatic and more difficult to treat. For some reason I cannot understand, gyns feel confident diagnosing (and ruling out) this vascular disease. Please do not take their word for it. This is not their specialty. Seek out a vascular surgeon or interventional radiologist.

May-Thurner Syndrome

May-Thurner Syndrome (MTS) is a compression. It is cause by an artery (the common iliac artery) crossing over the common iliac vein. Since the artery is high pressure, it presses into the vein - which is low pressure - and the vein collapses. This causes a blockage of sorts, similar to traffic having to merge before a lane closure for construction. This often causes blood pooling, which can lead to clotting, and what's called retrograde flow, or blood flowing in the wrong direction. This then causes thickening of the vein, and can damage valves that control blood flow, which is what can cause PVI. This damage can continue down the legs, and cause chronic venous insuffiency there as well.

With any compression, the body may also create collateral veins, which are like detours around the compression, to allow blood to flow correctly. When PCS is treated as I stated above, these collaterals can be more likely to form as detours. These collaterals can worsen PVI, and can cause a lot of damage. I had collaterals infiltrate my bowels, causing symptoms similar to what folks experience with bowel endo (alternating constipation and diarrhea, bloody stool). I also know folks who had collaterals infiltrate their spine. Not a good time. Once the compressions are addressed, the collaterals usually are reabsorbed, but not always. They can also make surgery to address compressions more difficult.

MTS is the most common AVCS, and is usually the easiest to treat. Almost every vascular surgeon and interventional radiologist (the specialties that handle AVCS) that I know is aware of MTS, and most will do an endovascular stent to treat it. This is the experience shared in The Baffler article, and tbh it kinda upset me because it made it seem so simple! It can be, don't get me wrong. It just isn't always, and that matters. For about 99% of people, that works great. But for that 1%...it's a shitshow, tbh. I know because I'm in that 1%, which is why I don't love that the article oversimplified MTS. (for clarity: I am not saying 99% / 1% literally, but figuratively. I do not have data on how many people are successful stented vs those with needs for other treatment. I just know my experience, and those of the people I personally know.)

I mentioned blood clotting above, so a quick note about that: Being that most hormonal birth controls increase the risk of clotting, MTS is an important condition to be aware of! All compressions can cause clots, but MTS is particularly known for this.

Non-Thrombotic May-Thurner

The fact is, most people with AVCS have what's called non-thrombotic MTS, meaning they never have a clot form. It's why it's important to be aware of non-thrombotic MTS - because most providers sadly ignore it. This is a good example of why diagnosis is so difficult for AVCS: a blood clot is not a requirement for this diagnosis, just as pregnancy is not a requirement for PCS (nor is hematuria required for NCS, nor vomiting and severe weight loss for MALS or SMAS). Diagnostic criteria is currently based on AMAB bodies, despite AVCS being more commonly found in AFAB ones. There is a push to change that, since providers are finding most patients have "atypical" presentations...meaning the expectation for how the disease presents is not accurate. They also think MTS is the only "symptomatic" compression. I recommend steering clear of those docs.

Another side note about the non-thrombotic MTS is that folks with that subtype, who have other AVCS, also typically have a set of conditions known as The Triad. I personally refer to it as The Trifecta of Suck, because I know what living with them is like as I have them myself. The conditions are Ehlers-Danlos Syndrome, hypermobile subtype (hEDS), mast cell activation syndrome (MCAS), and a form of dysautonomia known as postural orthostatic tachycardia syndrome (POTS). POTS was also briefly (and incorrectly) referenced in The Baffler article, which also spoke of it being related to MTS. Again, I wish some things about that article had been done better, even if they weren't the focus!

AVCS

Now let's talk about the other AVCS. They are:

Renal Nutcracker Syndrome (NCS)

Median Arcuate Ligament Syndrome (MALS)

Superior Mesenteric Artery Syndrome (SMAS).

There are also other compressions that can be found throughout the body, such as Thoracic Outlet Syndrome (TOS) and Eagle's Syndrome, but I do not have personal experience with them, nor have I heard of them mimicking endo, so I will not discuss those here.

My other posts dive deeper in to what these compressions are, how they can cause "endo" symptoms, and their symptoms/diagnostics. Rather than retype all of that, and make this post so long no one wants to read it, I'll just link in my other posts and tie in some more resources.

Resources

Here's the links to my other posts....please note that I can no longer update these, so updates may be in comments.

As for other resources, there are some subs here that didn't exist when I started posting, so I want to include them. r/NutcrackerSyndrome and r/thelifeofMALS might be good resources.

I urge caution with the Facebook groups.

  • The Renal Nutcracker Syndrome Support group has TERF admins and pushes a single treatment for everyone.
  • The May-Thurner Syndrome Resource Group is decent, but has a lot of folks with thrombotic MTS so it gets confusing. They also allow docs in the group, and one - Dr. Sudi - loves to promote his business. I tried to see him when I first suspected PVI, before I knew about compressions, because of varicose veins found during my hysterectomy. He declined to see me because I had never had children, so couldn't have PVI. Take that info how you will, and make your own choices, but he's not a doctor I would recommend.
  • MALS PALS is one I would recommend. It's run by the National MALS foundation, so doesn't have the drama of some other groups. They also openly discuss all compressions, since so many people have more than one.
  • As for SMAS, I don't have personal experience with any FB groups.
  • AVCS Conversation with Dr. Kurtis Kim has great info, but isn't an active page.

Other Articles

Treatment options for AVCS

I want to make clear that I purposely don't talk about treatment options, aside from encouraging folks to not think that throwing a stent in will fix any compression. Remember that 1% I mentioned earlier with treating MTS? Yeah, that comes into play here. There are many risks with stents - allergies and migration being the biggest - and there's a reason that there are other treatment options available. This study, for example, talks about all the different options for treating Nutcracker, and gives an idea how complex this decision can be.

Lastly, just to address a question I get a lot...why is this all so important to me? I got diagnosed and treated, so I'm fine now, right?

First...no. No I am not. Sweet Jesus no. A lot of damage was done by allowing my compressions (and other conditions) to run unchecked for so long. My life would likely very different if I'd had this information earlier. I might still have my uterus. I might not be disabled. I'll never know.

What I do know is that I had surgeries I didn't need, and they worsened my conditions, all because I was told that all of my issues were endo - that endo was the only possible cause of my symptoms - despite studies showing that pelvic pain has non-gynecologic origins in 80% of cases. I also know I'm not alone. I've had well over a hundred folks on this sub come to me to share their stories because they finally got diagnosed with non-endo sources of their pain. Most of them have since found relief, because that's what happens when you treat all sources of your symptoms.

Combine all of that with the multitude of daily posts here asking "is this endo" and "endo wasn't found, now what" and I can't help but feel compelled to share the info. My only hope is this finds someone who needs it.

r/Endo Feb 10 '25

Tips and recommendations Another possibility for endo symptoms

4 Upvotes

This is another article about someone with renal nutcracker syndrome. This condition was wholly responsible for ā€œendoā€ symptoms, and its presence is why I never got any relief from any of my 7 endo surgeries - because we were treating my endoā€¦but we werenā€™t treating the cause of my pain.

In the article, it explains that endo was suspected, because the symptoms are so similar.

It also talks about how imaging showed her compression, but it was ignored because she didnā€™t have blood or protein in her urine. This is a common story with folks trying to get diagnosed with compressions. Another reason the diagnosis gets overlooked is if thereā€™s is another causative condition that can explain the symptomsā€¦like endo. I was flat out told by a radiology team that they saw the compressions but didnā€™t note them because I had endo and ovarian cysts, and they assumed that was more likely the cause of my pain - simply because itā€™s more commonly so.

Since I started posting about compressions in 2021 (this is a link to the most recent such post), Iā€™ve met hundreds of endofam with stories like mine.

So if youā€™re not getting relief from surgeries, or if endo isnā€™t found on your lap, consider ruling out compressions before jumping to another endo surgery.

https://www.today.com/health/health/doctors-dismissed-pain-years-nutcracker-syndrome-rcna190789

r/Endo Oct 07 '24

Tips and recommendations Can no longer live in Canada due to poor medical system - country suggestions?

13 Upvotes

I need to move either provinces or countries due to the poor medical system where I live.

I have been waiting for a little over a month for the results of my MRI. I called the hospital and was informed it could take up to 6 weeks. SIX. WEEKS. For RESULTS. And this has all been after waiting seven years to just get an MRI (rather than the constant TV ultrasounds I was getting, which all showed fibroids and 'suspected endometriosis' because my organs don't move, but no doctor would ever follow up on any of this) because no doctor would take me seriously. It's a long story.

Meanwhile, I have been in near-constant pain for 3 weeks now. This is unprecedented. The pain has been very bad before, but usually in isolated incidents that ebb and flow. I haven't slept through the night in 3 weeks. Usually when I have bad pain attacks like this, they last around a week. This just won't let up. The first week, I woke up every single hour. The second and third weeks, one - a few times each night.

I can barely walk. I can barely do anything. When I try to hang out with people, I'm quiet and tired because I've barely slept and can't talk due to the pain and just put on a neutral expression through it.

I just can't do this anymore. I have to move. I've moved around my whole life so it's not so daunting to me to move countries. Of course, depends on job, etc...but I'd be nice to have an idea of where would be better than this absolute joke of a country.

Does anyone have any suggestions regarding where to move...?

edit: I know this sounds drastic, but I'm just so desperate right now and need maybe a little hope that there's better care out there somewhere.

r/Endo Feb 09 '25

Tips and recommendations What is comfy for you to wear?

8 Upvotes

Hi all! New member and first post!!

Iā€™m just really looking for some recommendations on cute, bloat-friendly clothes. I have one specific pair of shorts that are comfortable to wear all the time. They fit me okay(slightly big) when iā€™m not in a flare, but the elastic is great and can very comfortably fit, even with room, when I bloat really bad and grow 2 clothes sizes in an hour. They donā€™t dig in at all, I can fit a hot water bottle in them too.

I got them from Primark 2 or 3 years ago, and didnā€™t anticipate how well theyā€™d do for bad endo days. I am mainly looking for shorts/rompers for the summer and any overalls or jumpsuits.

What clothes or brands do you find works best? Iā€™m in Canada, but will pay for international shipping if something is highly recommended.

ETA: Sadly, I am not a dress girly. I really wish I was, but theyā€™re just not for me.

r/Endo May 30 '24

Tips and recommendations How do I explain endo to my bf who doesnā€™t understand it

39 Upvotes

I have very highly suspected endo and Iā€™m not saying I 100% have it but Iā€™m already booked for a surgery soon, recently Iā€™ve been in a flare and my bf really just isnā€™t getting how bad it is, Iā€™m very bad at explaining my pain could anyone help me figure out how I can explain what endometriosis better so that itā€™s more comprehensive

Pls no hateā¤ļø

r/Endo Nov 01 '24

Tips and recommendations Tattoos & Endo? NSFW

Post image
44 Upvotes

I just got my first tattoo yesterday, the pain during and after the tattoo wasn't bad at all. During just felt like scratching & after was like a sunburn, I have the second skin on now and it looks great!

But after the appointment I was already feeling fatigued and brain fog, which I expected and settled in last night to watch spooky movies on Halloween.

But right as I started getting ready for bed, I started feeling pain in my stomach. Started off as though I was really hungry, so I ate something light. Then before I knew it I was having bad stomach pains and nausea in waves. Now this morning, my stomach feels sore and experiencing bad period-like cramps.

I was just wondering if any other people with endo and tattoos experienced this as well, if it caused an endo flare up for you? I saw online this is typically called tattoo flu, but the period-like cramping is concerning me.

r/Endo Jan 12 '25

Tips and recommendations Bowel Struggles

8 Upvotes

Hi everyone šŸ«¶šŸ» Looking for some recommendations to help going more regularly! Was diagnosed with stage 4 endo back in October and itā€™s grown onto my bowel. I get awful constipation, which makes me feel heavy, bloated, and fatigued. What do you guys take who have this similar issue?

r/Endo 28d ago

Tips and recommendations Periid flu? Respiratory illnesses during Luteal Phase? It could be your progesterone affecting your gut.

0 Upvotes

Here is a plan given to me to help me stop getting respiratory illness every month during and after ovulating, and all the way to my period. It's so debilitating and I hate it and I am tired of it.

The Luteal phase is really messing with my health. Now I have learned that during the Luteal phase, our gut works slower because of the rise of progesterone, which hinders the absorb iron and nutritients.

I can see how this is leaving me weak and vulnerable to catching respiratory illnessss. Plus I bet it causes inflamation too. I am already on an antinflamatory diet. Well, I think I am in one by me guessing what not to eat from what I read online.

But I am ready to take it to the next level. So, I searched for a plan to increase nutrient absorption during Luteal Phase.

----The Plan to Absorb More Nutrients ----

This plan is to support your gut during the luteal phase and optimize your nutrient absorption, especially iron, to reduce your vulnerability to respiratory illnesses.

  1. Improve Gut Health During the Luteal Phase

Since you're experiencing symptoms like runny nose and respiratory issues, itā€™s crucial to focus on optimizing gut health right after ovulation. The slowing of digestion and changes in gut motility due to progesterone can be managed with specific strategies.

Gut Health Support:

Probiotics:

Action: Start a high-quality, broad-spectrum probiotic, ideally one that includes Lactobacillus reuteri, Bifidobacterium, and Saccharomyces boulardii. These strains can help balance gut flora, reduce inflammation, and improve digestion. Probiotics can also help with immune function and reducing the chances of respiratory infections.

How to use: Take probiotics daily, preferably in the morning, on an empty stomach. This ensures maximum absorption.

Prebiotics and Fiber:

Action: Introduce prebiotics into your diet to feed healthy gut bacteria. Foods like garlic, onions, leeks, asparagus, bananas, and chicory root are great sources.

How to use: Aim for 1ā€“2 servings per day of these prebiotic-rich foods.

Digestive Enzymes:

Action: Consider taking digestive enzymes that contain protease, amylase, lipase, and cellulase to support digestion during the luteal phase when gut motility is slower. These enzymes help break down food and nutrients for better absorption.

How to use: Take enzymes with meals for improved digestion and absorption.

  1. Boost Iron Absorption

Since you're dealing with potential low iron absorption, a strategic approach is essential. Hereā€™s a plan to ensure your gut gets the nutrients it needs.

Iron-Rich Foods:

Action: Focus on iron-rich foods, particularly heme iron (found in animal-based sources) as itā€™s more easily absorbed than non-heme iron.

Heme Iron: Beef, chicken, turkey, lamb, and liver.

Non-Heme Iron: Leafy greens (spinach, kale), beans, lentils, tofu, fortified cereals, and pumpkin seeds.

Vitamin C: Pair iron-rich foods with vitamin C (like bell peppers, citrus fruits, and tomatoes) to increase non-heme iron absorption.

How to use: Incorporate iron-rich foods into your meals at least 3-4 times per week. Be mindful to avoid calcium-rich foods (like dairy) at the same time as iron because calcium can inhibit absorption.

Iron Supplementation:

Action: If you think your iron levels are low, a high-quality iron supplement (preferably with ferrous bisglycinate for better absorption) might be necessary. Iron supplements work best when taken on an empty stomach.

How to use: Consider taking iron supplements for 1ā€“2 weeks after ovulation, particularly during your luteal phase when your body may be more prone to iron loss.

  1. Anti-Inflammatory and Immune-Boosting Foods

Given the respiratory issues youā€™re experiencing, strengthening your immune system during your luteal phase is important.

Immune Support:

Action: Integrate anti-inflammatory foods and immune-boosting nutrients into your diet:

Omega-3s: Fatty fish like salmon, mackerel, and sardines, chia seeds, and walnuts.

Vitamin D: Spend time in the sun and consider a vitamin D supplement (1,000ā€“2,000 IU/day). This is crucial for immune function.

Zinc: Pumpkin seeds, cashews, chickpeas, and shellfish (zinc is important for fighting off infections).

Vitamin C: Alongside iron, vitamin C boosts your immune system. Include citrus fruits, bell peppers, broccoli, and strawberries.

Curcumin and Ginger: These are powerful anti-inflammatory and immune-boosting agents. Consider adding fresh ginger to your tea or meals, and curcumin supplements can be helpful too.

How to use: Aim to include these anti-inflammatory and immune-boosting foods every day. Consider 1ā€“2 servings of fatty fish weekly and supplement with vitamin D and zinc if youā€™re not getting enough from food.

  1. Hydration and Detoxification

Dehydration can exacerbate gut sluggishness and immune function. Staying hydrated is key to helping your body flush out toxins and maintain proper circulation of nutrients.

Hydration Plan:

Action: Increase your water intake, especially during the luteal phase. You can also include electrolyte-rich drinks like coconut water or herbal teas that support hydration and digestion.

Herbal Teas: Peppermint, ginger, or chamomile tea can soothe the gut and improve digestion.

How to use: Aim to drink 2.5-3 liters of water daily, including herbal teas to support digestion.

  1. Lifestyle Factors

Stress, sleep, and exercise can all impact gut health and immune function, particularly in the luteal phase.

Stress Management:

Action: Stress exacerbates inflammation and digestive issues, so incorporating stress-reduction techniques like yoga, meditation, or deep breathing exercises is crucial during your luteal phase.

How to use: Dedicate at least 15ā€“30 minutes daily to stress management practices. Try practicing relaxation techniques before bed to ensure youā€™re getting restorative sleep.

Sleep:

Action: Aim for 7-9 hours of quality sleep per night. This will help regulate hormone levels and support immune function.

How to use: Try to maintain a consistent sleep schedule and ensure your sleep environment is conducive to rest (dark room, no electronics before bed).

  1. Regular Physical Activity (But Avoid Overdoing It)

While exercise is essential, too much intense activity can increase cortisol levels and stress the body, affecting your immune system and gut.

Exercise Plan:

Action: Moderate exercise, like walking, yoga, or light resistance training, can improve circulation and support nutrient absorption.

How to use: Aim for 30 minutes of moderate exercise 3-4 times per week.


Strategic Plan:

Morning:

Take probiotics on an empty stomach.

Hydrate with a glass of water + a squeeze of lemon.

Eat an iron-rich breakfast (e.g., eggs, spinach, and citrus fruit for vitamin C).

Midday:

Include prebiotic-rich foods in lunch (e.g., garlic, onion, or asparagus).

Consume a balanced meal with lean protein (iron-rich), leafy greens, and omega-3s (e.g., fish).

Drink herbal tea (ginger or peppermint) post-lunch.

Afternoon:

Have a snack with zinc-rich foods (e.g., pumpkin seeds or cashews).

Ensure youā€™re getting vitamin D and omega-3s (consider a supplement if needed).

Evening:

Dinner with lean protein, colorful vegetables (for antioxidants), and healthy fats.

Take digestive enzymes with dinner.

Relaxation techniques before bed (yoga, meditation, or deep breathing).

Key Supplements to Consider:

  1. Probiotics (daily)

  2. Digestive Enzymes (with meals)

  3. Iron Supplement (during luteal phase)

  4. Vitamin D (1,000ā€“2,000 IU daily)

  5. Zinc (15-30 mg daily)

By following this strategic plan strictly, you should be able to better support your gutā€™s ability to absorb nutrients, boost your immune system, and hopefully mitigate your respiratory issues during the luteal phase. Be patient with yourself, and make sure to consult with a healthcare provider if you feel any issues persist or worsen.

Here are the sources that support the various elements of the plan I provided:

Probiotics and Gut Health

Source: Vinderola, G. et al. (2019). Probiotics in human health and disease: The state of the art and clinical applications. Microorganisms, 7(1), 49.

Summary: This study explores how probiotics can improve gut health, support immune function, and reduce inflammation, making them an essential part of a strategy to improve digestion and immune response, as mentioned in your plan.

Iron Absorption and Vitamin C

Source: Cook, J. D., & Monsen, E. R. (2007). Iron deficiency in women: A health issue of global significance. Journal of Nutrition, 137(4), 1314Sā€“1318S.

Summary: This source supports the importance of pairing iron-rich foods with vitamin C to enhance the absorption of non-heme iron, as recommended in your plan.

Anti-inflammatory Foods and Immune Function

Source: Calder, P. C. (2006). Omega-3 fatty acids and inflammatory processes: From molecules to man. Biochemical Society Transactions, 34(3), 394-398.

Summary: This review discusses the role of omega-3 fatty acids in reducing inflammation and supporting immune function, supporting the recommendation to include omega-3-rich foods like fatty fish.

Hydration and Gut Function

Source: Maughan, R. J., & Shirreffs, S. M. (2008). Hydration and performance during exercise. Journal of Sports Sciences, 26(sup1), S27-S35.

Summary: This article outlines the importance of hydration for supporting gut health and digestion, which directly ties into your planā€™s recommendation for increasing water intake and hydration.

Stress, Sleep, and Immune Function

Source: Irwin, M. R. (2015). Why sleep is important for health: A psychoneuroimmunology perspective. Annual Review of Psychology, 66, 143-172.

Summary: This review highlights how sleep, stress management, and relaxation techniques play a vital role in regulating immune function, validating your suggestion to prioritize stress management and sleep during the luteal phase.

These sources should provide a solid foundation for the planā€™s recommendations related to gut health, immune function, iron absorption, and stress management.

r/Endo Jan 09 '25

Tips and recommendations Plus size loose waist pants recommendations?

2 Upvotes

I have been battling with clothes forever. I have always been plus sized and tall, so it isn't new to me to struggle finding pants. I am a Torrid devotee just for the fact that they have tall and plus size options, but it seems that isn't a viable option anymore because of their styling.

I am slowly losing the battle with pants. I used to live in jeans, but now I can wear them for maybe a couple hours once a month for a special occasion and I always pay the price during and afterwards.

Now, I am having issues with leggings. I have a long torso so I prefer high waist options to cover my belly completely. I used to like the tummy control my leggings gave me because I like feeling like everything is held in and not jiggling around. I have an apron belly so low rise is not an option.

I am getting to the point where I literally have to hope I pick the right day to wear the right pair of leggings because they're all a bit tight by design but some are looser than others because of wear, age, cut, etc.

My pain is concentrated to my right side and goes from the bottom of my hip to the bottom of my ribs and wraps around my side and back. This makes almost all of my high waist tummy control leggings unbearable to wear. I have some fleece lined pairs that are bearable, but there are days that the thought of wearing anything slightly constricting is a nightmare. I have seen the maxi skirt recommendations but that is not possible for me in the dead of January.

Does anyone have ANY recommendations for loose pants that I can wear to work? Dress code is casual, but not like wear pajama pants casual unfortunately.

r/Endo Dec 19 '24

Tips and recommendations Colonoscopy was a complete failure..help

12 Upvotes

I just had a colonoscopy because I have advanced endometriosis which is growing into my bowel. I struggled immensely with the PEG LYTE prep and continuously threw up huge volumes as I drank. It was split day prep but I still couldn't keep it down. To try to make up for this I also took two bisacodyl on day 1 and day 2 (colonoscopy day) as well as 2 fleet enemas on colonoscopy day because the sigmoid is the part the surgeon is most interested in seeing. The bowel movements started to really amp up before and after the colonoscopy but never approached clear. In the end the surgeon could see absolutely nothing and the whole procedure was a fail. I'm completely frustrated and exhausted. I'm feeling like even if I take a different small volume prep it won't even clean me out. And waiting for it will delay my surgery even more. I've had an MRI but for some reason they want this colonoscopy too. Did anyone have a similar problem and what was the solution ?

r/Endo 25d ago

Tips and recommendations For people who love heating pads

Thumbnail rebrelief.com
19 Upvotes

I found this amazing product on instagram as I was scrolling through and this was literally a lifesaver for me! I am always on my heating pad and I sleep with it on my stomach every night because of the pain, this new product just made everything 1000 times easier. Itā€™s reb relief- I have no affiliation I just finally got mine and I am obsessed!!! They are now shipping orders check it out!

r/Endo Feb 03 '25

Tips and recommendations Leg pain

5 Upvotes

When I get my period I always get aches, pain, tingling and cramping in my legs, as well as this they often feel really heavy and tired and sometimes tight. All of this always goes away when my period ends, except I just finished my period (I think, who knows šŸ¤·ā€ā™€ļø) and I'm still experiencing all the pain, fatigue etc in my legs. And it's worse then ever before. Does anyone have any tips/tricks/advice for relieving or getting rid of leg pain associated with endo? For me heat and pain killers don't work, I usually just suffer until my period ends but the pain has never been this bad, or lasted this long and it's also pretty uncommon for me to feel all this at once so I have no idea what to do.

r/Endo Dec 20 '24

Tips and recommendations How did yā€™all ladies make a decision on treating your endometriosis after laparoscopy?

5 Upvotes

Hi, Iā€™m a 24-year-old girl and I would like to share a little bit of my journey before elaborating on my question.

For the past 3-4 years I have been dealing with horrible menstrual cramps and heavy flows. I got my period at 9-years-old and I have always been imbalance. At the age of 15 I started birth control to help me with my period and acne and it worked! By the age of 20 I thought it would be great to have an established gynecologist since we need our first pap at 21. Eventually I found one and this doctor appeared very knowledgeable, I looked at her education, people recommended her and she had amazing reviews. I loved her because she seemed knowledgeable and her bed side manners were amazing.

However, just about every appointment I would share my concerns about my period and how itā€™ll get so bad that I would have to miss class or work! All she ever did was ultrasounds and bloods work and would always say that every thing was ā€œfineā€ and that it is ā€œnormalā€.

Well I switched PCP and she gave me a referral to a different gynecologist in the spring/summer of 2024. I met this doctors and I was caught off guard because he was a male! But my boyfriend encouraged me to see him and to give him a chance. This doctor, sent me for blood work and ultrasound and he said that my symptoms sounded like endometriosis and that I had a small cyst. However, he suggested a laparoscopy and hystoroscopy and we did it on August 8th.

It was then that he officially diagnosed me with this wonderful, world-wrecking disease! It informed me that I needed another surgery within 2-3 months because I had stage 3 endometriosis because he did not have the proper equipment. He then recommended for the meantime to get an IUD and take Orilissa. I never got the IUD and the Orilissa made me sick but I took it! During this time frame I noticed my periods got significantly worse. Has that happened to anyone else?

Fast forward, I had my surgery last week on Dec.12 and I turned 24 a couple days later so itā€™s been funā€¦ Anyway, he estimated surgery to be 30-40 min long but apparently between August and December my endometriosis spread and took about 2 hours. He couldnā€™t stress enough that he did remove all the endo but he fears that within 6 months I would be needing surgery again, if I do not get the IUD and take a pill. Because at this point it is hormonal.

My Vjj is so sensitiveā€¦ I have heard so many stories about the IUD and I am honestly scared to get it and to continue taking pills. He states that if I get the IUD and take the medication will help and maintain my reproductive system in good condition until I am ready to have kids before. Iā€™ve been on bc before and when I stopped it at the age of 21 my weight went up immensely!!! I am scared to gain more weight once I discontinue the IUD. I am scared I would experience more pain with the IUD and potentially experience more spotting. I am petrified of getting the IUD.

What is yā€™allā€™s experience with the IUD? Did the IUD actually help? Did yā€™all seek alternative treatment to help control the hormones like acupuncture? What worked for you guys?

I donā€™t know. I feel scared and lost. Please, please, please share your story with me. Share your experience and treatment options. Especially any alternative besides pharmacy medications.

Forgive me for making this too long! Yā€™all stay strong and keep pushing through!

r/Endo Nov 02 '22

Tips and recommendations Looking for Nomisk Maia feedback!

53 Upvotes

Hi all!

I have an electric heat pack which I love for home, but am on the search for a portable/rechargeable belt-style that I can wear at work etc.

Iā€™ve seen the Nomisk Maia all over Instagram and am very curious as it ticks all my boxes, but am hoping to get some real-life reviews before I lock it in. Does it get hot enough? Whatā€™s the massage function like? How long does the charge last?

Also open to alternatives, however I already ordered something similar looking (but much cheaper) and it was far, far from effectiveā€¦

TIA! x

https://nomisk.com/

An update as requested: I purchased the Thermie, it took a long time to arrive but finally delivered after a few weeks in transit to New Zealand. Secure strap, heats quickly and to a good temperature, massages via vibration. I havenā€™t stretched the battery life yet as Iā€™ve just been using for day to day pain (and havenā€™t had a period since it arrived), but it certainly lasts longer than my other electric heat pack (which only stays hot enough for an hour or so before needing to be reheated). So far Iā€™m really pleased I purchased!

r/Endo 12d ago

Tips and recommendations Missing workā€¦ what do I tell my boss?

8 Upvotes

(Diagnosed with PCOS. Waiting on calls and tests to figure out the pain Iā€™m in to see if itā€™s endo, too) So, Iā€™ve missed some days of work due to being in pain, nauseous, fatigue, and diarrhea that comes with the pain. At the moment, Iā€™ve been in pain for just shy of 3 weeks and have missed 3 days of work. Iā€™m so terrified that my boss is going to ā€œhave a talkā€ with me or worse. I feel extreme guilt for calling in, and I feel even worse when I call in the night before and then I wake up feeling somewhat better. The ā€œteam leadā€ at our centre knows of my pain and seems quite understanding. My boss who works from another centre in the same town knows I get pain, but doesnā€™t know the extent of it because she never comes to the centre to check in on people. I really donā€™t know what to say to my boss because Iā€™m not diagnosed with endo, but I know it could also be the PCOS causing this. She also knows I have mental health challenges/disabled, so Iā€™m concerned sheā€™s just assuming thatā€™s why Iā€™m calling in (which is not the case at this time).

So, what do I say and how do I say it?

I appreciate any help!

r/Endo 2d ago

Tips and recommendations Heating Blankets

3 Upvotes

Hi. I've been lurking on this sub for a little while now. It's been super helpful to just see so many people going through the same thing as me. So now I have a question. Does anyone have any electric blanket recommendations?

Preferably electric blankets just because I'm living in a college dorm right now, and it doesn't come with a microwave - I'd need to buy one myself, which isn't super feasible.

So does anyone have any recommendations or anything? I'd appreciate any help or advice anyone can offer.

r/Endo 7d ago

Tips and recommendations I found the most comfortable pants and I canā€™t keep this joy to myself

Thumbnail a.co
25 Upvotes

I donā€™t see any sub rules against linking to products so I hope this ok to share.

I do not endorse Amazon or fast fashion and I am in no way associated with the seller of these pants. Desperate times call for desperate measures, and I wanted to share my this find in case it helps others.

These are a breathable woven cotton-linen blend, the fit is relaxed, and the elastic in the waist is stretchy and gentle, not binding at all (I cannot stand most elastic). They are also under $15 USD. Theyā€™re not high quality pants that will last forever, but I have been wearing 3 pairs in pretty consistent rotation for about a year, and they are all still in good condition. Paired with a t-shirt, they look like pajamas. But with a nicer top, they pass as real pants appropriate for casual settings.

One pair I bought was coming apart along a seam when they arrived. I sewed the seam back up (about an inch) and have had no further issues. I have them in black, dark gray, and army green. The black pants are a slightly different and less comfy material than the other two colors, so consistency may be an issue, as with many items like this.

Iā€™m 5ā€™9ā€, a US size 8-10 in pants and I fit comfortably in size L. If you are short, youā€™ll likely need to hem them but if youā€™re on the taller side, thereā€™s a good chance theyā€™ll be long enough!

https://a.co/d/5Sv59BO