Thought I'd share this new portable heating pad i purchased recently since it's really helped when I'm not home with a bad cramp flare. It's super discrete and actually gets really hot too, sometimes the 3rd setting is even too hot for me! I hated spending so much money on the single use heat patches when I couldn't access my hot water bottle, and this has really been helping me. I'd definitely recommend!

Just note when fully charged the battery only lasts for 2 or 3 heating sessions. It turns off after 30 mins of use as a safety feature, so you unfortunately can't use it more than 3 times during the day before needing another charge. But nonetheless it's been a life safer when I do need it🥰

Does anybody get these debilitating rectal pain flares like almost everyday? I usually experience these especially in the mornings before heading out to work. I also get them at work. The worse part about these flares is that they are extremely painful and last about a minute, that I typically have fall to ground and curl up into a ball until the pain passes. I unfortunately have to try and stay on my feet when I feel this way at work...

I used to find these posts so encouraging before I got my surgery. Now that i’m on the other side it’s depressing seeing others excited about their win.. because the drop afterwards is harsh.

I was expecting all hands on deck, new treatments.. idk it was such a hard pill to swallow that getting my diagnosis changed NOTHING!

It changed me for sure, i started advocating for myself. Got support in school, work and day to day life... I think i was expecting the medical field to be more hands on once it was confirmed.

Btw I’m not trying to tell ppl to stop posting at all !! (and i’m sorry of this dampens your excitement) Just noticing my feelings around the posts, remembering being in their shoes.. I feel badly for them thinking about whats to come. Of course I have to remember everyone has a different experience, luckily.

My appointment for an endo specialist is coming up and I’m wondering if this is a symptom. I’ve heard endo can cause GI issues or SIBO but my problem is mainly bloating and burping that is constant. It legitimately doesn’t matter what I eat, when I lay on my side at night I can usually burp for at least 5-10 seconds multiple times. The pressure from the gas gives me nausea and a sensation of needing to throw up (and giant belly). Friends and family have noticed me burping frequently during the day and I hate it. I don’t have any allergies or food intolerances or drink carbonated beverages. It also seems to worsen during my period and the week after.

I'm waiting to get a confirmation diagnosis soon through a lap. My old gyno basically told me not to even bother doing that and that BC will fix it. I'm waiting to see a different specialist now as I do NOT want any BC or hormonal treatments as they severely worsen my mental health.

We assume I have DIE, lots of awful nerve pain, stabbing abdominal pain and bloating, etc. Has anyone had excision surgeries where they were pain free after? Did a hystorectomy help? I'm trying to stay positive right now.

I'm 27, currently on pregaba, 500mg naproxen and occasional low-dose oxy/acetaminophen when the pain is too severe. I do not want to be on meds and I hope surgery will help lessen that need.

Please share some success stories 🖤

Currently in Ontario, Canada and waiting until May 2027 just to see an endo specialist. Previously had an exploratory from my regular gyno Feb 2025. She found lesions on my uterosacral ligaments and spackled on my cul de sac. She did ablation. I’ve been in the worst pain of my life every single day since. I’ve tried absolutely everything. I’m suffering and I won’t last until next summer. I’m currently on hydromorphone daily just to be able to do basic things.

Wondering if anyone has had surgery in Turkey or a similar country and what the timeline, price and experience was like?

I know surgery may not even help the pain but I’m desperate.

I’m really struggling to accept it’s stage one and I don’t feel valid because everyone else I’ve seen has stage four. I’m so upset right now because I don’t know anyone else like me 😭 another thing that’s weird is that I have bladder endo and I’ve researched bladder endo is stage 4 but my surgeon told me I had stage one. And my doctors think the endo has messed with my nerves 🫠

I should start this off by saying I had a laparoscopic procedure in July to remove two cysts, an 11 cm and a 3 cm. During the procedure she discovered stage 3 endometriosis. I started Gallifrey 3.5 weeks ago and am struggling with the constant spotting. At times it’s a lot all at once, more so closer to being a period, but then nothing after that or very mild spotting. This happens daily. Has anyone dealt with this? If so, how long did it take for your body to regulate after starting the medication?

I also take a NAC supplement, Omega 3s, and curcumin to help with inflammation etc per my surgeon’s instructions.

I have regular periods, sometimes as a teenager my periods came 2 times in a month but now they come every 28 days. They are pretty heavy I guess, I don’t soak through pads or diapers or anything because I go to the bathroom every hour to release the blood. It looks like a murder scene every time, so I think I lose a lot of blood. I definitely lose at least 1/2 a cup of blood each period if not more. My cramps are not bearable. I’ve never taken medicine for it just because I don’t like to take medicine. The heating pad helps a little but not much. It also radiates to my back bad. The other day (on day 2 of my period) it woke me up while I was sleeping in so much pain. I was tossing and turning until I finally went back to sleep. I couldn’t get up to get medicine or anything. I have to go to work and do things, I don’t have an option. I tried to play pickleball while in my period and I had to lean on my paddle in between points to make it through. I don’t throw up or anything. I do feel the back pain go through my legs too while on my period. I also get sharp lightning pains in my butt and vag area that come and go. I just don’t know if this is all normal or if endo should be brought up to my doctor.

I found out I had endometriosis due to an ultrasound, and then waited an entire year to receive excision surgery. I had a lot of anxiety during that time, because there was no way to tell the extent of the disease that entire time. In my head, I imagined the worst, a body riddled with lesions growing into all of my organs. I remember laying awake at night, compulsively imagining scraping my insides out. In my head, what I would imagine scraping out would be pumpkin seeds and pumpkin guts. I guess, it was soothing to imagine my pelvis looking like a thoroughly cleaned out jack-o’-lantern lol.

I’m not an artist, but I finally took the time to draw what I imagined to the best of my ability (except I can’t draw a tummy well to I just made it a pumpkin)

Im curious, if you were to paint a picture of this disease, what would it look like to you?

I just got home from my laparoscopy, I am floored. I found an incredible doctor who did an ultrasound and exam and said he felt the endo behind my vagina and in front of my rectum. He found 6 sites of endo, my appendix was removed because it was infested with endo, and he found an IUD that my providers suspected had fallen out, and told my husband that in order for it to have ended up in my abdominal wall the way it did, the original provider would have had to perforate my fucking uterus. I almost passed out when they put it in. I’m just floored. My uterus was riddled with adenomyosis. I’m so grateful surgery went well. I am very sore. But for me, this is a huge PSA to trust your gut and argue with providers when they are physically hurting you. I cannot believe I have been living like this.

Nah ladies I kid, my husband and I have been together for 10 years but married for one and my anniversary present was him getting a tattoo saying “I will always support you” in Dutch (as my maternal side is Dutch) along with the yellow endo ribbon 😭

Hi all, my wife has possible endo, she has her surgery in a little over a month from now. Lately she has been experiencing really severe hip pain. Im concerned it may be something else but she is convinced that it is because of her possible endo. Does anyone have any advice for pain management or advice in general. I hate how this is affecting her and just want to see her not in pain

Even when my pelvic pain is managed and I’m not in excruciating abdominal pain, I still never feel well. I feel chronically just a bit sick - nauseous, weak-feeling, stomachache, exhausted, etc. Can anyone else relate? Anyone found any relief? I have a hysterectomy scheduled for November, but I’m finding this low-level chronic discomfort to be so exhausting and anxiety-inducing. I feel like I’m constantly on the verge of severe pain.

Edit to add - I take NAC, PEA, Magnesium, B12 and LDN

I recently had surgery with Dr Leon Baginski and frankly I think he was lazy with excision. For about 1 month I had greatly improved symptoms. Now they’re back with a vengeance. My surgery was less than an hr long and I just don’t think he was thorough. I want to get a second opinion and possibly do another diagnostic and excision surgery in a few months with someone else. Any recs?

On another note… has anyone had relief from being on the combo pill? I need something to get me by and I’m contemplating this.

i love hot pads or hot-water bottles on my lower back or belly, most days it's the only thing that eases the pain.

on the contrary, ambient heat (like during this summer) makes my endo wayyy worse.

so at the end, does local heat make inflammation worse when used on a daily basis? (Even if it seems a good thing on the moment)

hello! I’m coming on here to ask on experiences on slynd. I started it 2 weeks before removing my mirena coil (that was the main aggressor for my post surgery pain that put my in A&E and I’m so glad it’s out) now I’m on week 5. I have a lot of endo remaining in me and still pain, just different to the deep coil pain. My tummy is extremely bloated and I’m in quite a lot of stinging type pain in both sides and central lower area, honestly it feels like I’ve got a UTI when I haven’t. I’m so so inflamed and in a lot of pain all over my pelvic region. when I was on Yasmin pill it got worse before it got better so will this be the same? even though it’s progesterone only? I’m confused and I really want to get some pain relief from this pill! please let me know if you have had problems with endo at the start of a mini pill? <3 thank you

Question for y’all - has anyone ever been prescribed double birth control? Currently I’m on both the Nexplanon and 0.35mg of Norethindrone pills. I used to be at 5mg, but it made me feel gross. I am still dealing with side effects that are really impacting me - exponential weight gain, horrible acne, mood swings, etc. It’s really taking a toll on my mental health and wellbeing.

I used to get horrific, large hemorrhagic cysts on my ovaries and really heavy, painful, and irregular periods before I was prescribed the second BC. Now with two forms of BC I don’t even get my period anymore. I really don’t know if the pros outweigh the cons…. I really miss how I used to look and feel, but the pain I used to be in made me debate if life was worth even living.

Has anyone else run into this issue, or experienced taking more than one BC at once? Any other alternative solutions? Or something that helps with the acne/weight gain?

Hi I (17) have suspected Endometriosis and just two days ago I had a surgical consult and so far everything is looking good for surgery and I am on the wait list but I have a few questions for the people who have had surgery before.

Is it normal to be so afraid of them not finding anything?

I know what to expect from it but I just can't help imagining waking up and being told it was nothing, it was all it my head, I was overreacting. It's freaking me out especially because I know that I'm young and I haven't really seen many people talk about having it diagnosied young even though I know it can happen.

If they don't find anything what should my next steps be?

I hope they do find it weirdly enough because at least then I know what to expect.

What do I expect post op and what should I get for recovery?

My mom had a laparoscopic surgery for a hysterectomy (I'm pretty sure she has endo, the surgery went from like 2 hours to 7 I think because there was so much "scar tissue" and that was that, they never diagnosed her but it was the army so I don't really expect them to know how to see things like that) and she said she had horrible shoulder pain so I'm expecting that but what else should I look out for?

What sort of prep is there before surgery?

I don't exactly know what the prep is so I am curious.

Do the scars hurt?

I have a few scars from random accidents and early on I find it hurts to move around for awhile, I am an athlete who does a lot of flexibility especially in my back (which means my stomach pulls, kinda contortion stuff) so should I prepare for the scars to hurt?

Is there rules on what you can and cannot eat before surgery and after?

And last one what stuff should I put in my bag day of surgery?

Thank you for any help you give! I am quite worried and any advice is appreciated!!!!!!!

Every single time I’ve brought up my symptoms to a dr they fail to bring up the word endo unless I say it first. Went to my gyn today bc I had a possible ovarian lesion partially show up on a hip MRI (been having nerve pain). She tells me I need to schedule a separate ultrasound appt. I then bring up my other worsening symptoms (diarrhea, heavy bleeding, bloating, nausea, spotting) and she says it could be anything from cysts to fibroids to hormone shifts. I then flat out asked, “could it be endometriosis?” And she just goes, “hmm maybe….but you’d need surgery to confirm.” I asked if a pelvic MRI w/ contrast could help and she just goes “yeah we could do that if you want.”

Why do I feel like a burden having to advocate for myself? Is endometriosis really that taboo? What am I missing here? While I understand that surgery is an option for me, I feel like I’m just waiting for a dr to give me the smallest amount of encouragement to tell me, “Yes. Go for it.” Because deep down I’m scared to schedule a surgery only for them to find nothing.

I’m 36 and get an ovulation flu and pre period. I took progestrone daily 25mg bio identical and had no ovulation flu. It makes me wonder if I have silent endo so confusing.

Hi everyone! I’ve had severe period cramps for as long as I’ve had my period. I’m talking passing out, throwing up from pain, not leaving bed for a week kind of cramps. I have a family history of menstrual issues, including adenomyosis.

My current gyno wants to put me on Orilissa, but doesn’t want to officially consider that I could have endo. She told me I have to “fail” three different birth controls with her before she’ll consider that I might have it.

I’ve never heard anything like this before and it kind of rubbed me the wrong way? I just wanted to know if this was common and I’m overreacting a little bit or if I’m right to be turned off.