I’m getting a lap in a few weeks, and I am so looking forward to my dr getting in there and seeing what is in there. It’s been 8 years since my last one, and I’ve been on Provera for 7.

I’m worried that they’re not going to find anything because of being on the depo. But I’ve been having ridiculous amounts of vaginal pain and occasional abdominal cramping. This started back in February and keeps on going. I’ve also had increased digestive issues recently. Like more prone to gas and bloating symptoms and literally every time I experience it I want to die.

I’m just wondering if there’s anyone out there that has experienced increase in IBS symptoms because of their endo? Was your gyn able to find anything on the bowel/bladder? I’m convinced that there is something in there causing all the pain. The vaginal pain comes especially after a bowel movement.

I’m taking gabapentin for the pain and it does help but I’m noticing break through pain with it still.

So I went to the adolescent specialist near me to try and go on the pill since I had a bad reaction to Nexplanon. They asked all of the normal questions and she was pretty concerned with the sheer amount that I bleed and for how long it lasts, along with the pre, during, and post period cramps that render me unable to do anything. I’m really scared bc she told me that the only way to really diagnose do is to do laproscopic surgery, they’re going to try and clear me for the pill through a neurologist because my migraines make me a risk for stroke if I take anything with estrogen in it. It sounds like I’m going to have to have it and that genuinely terrifies me, I also don’t WANT kids, but I’m also terrified of the infertility. Some part of me always wanted kids a little, and what if I don’t have endo and this was all for nothing??? Idk, I’ve been victim to medical gaslighting so much that idk if my symptoms are even valid anymore. This shit is scary and it sucks. If you guys have any advice or if you think I don’t have it based off of experience, I would really appreciate it 😭❤️ thank you

So let me warn this is gonna be long so I apologize but I really need to discuss this.

For back story I have Gastritis, esophagitis, ulcers, Endo, PMDD, Hidradenitis Supperativa, OCD, asthma, and migraines. Just so all of my issues are out there.

Monday morning I woke up expecting my period and anticipating it to be excruciating because my Endo has gotten worse. But I woke instead with a very STIFF, TIGHT, painful feeling in my under breast and upper back. Like a hug. But very very painful. It lasted about 40 minutes.

Every month before my period about 10 days before I can't breathe and I have diaphragm pain/upper body pain. But I never know what's gonna happen, it's new every single month. And I was just wondering if anyone has ever had this kind of issue?

It could definitely be gastro, it could be anxiety, muscular, ect. But I kind of just want to know if anyone here with Endo has ever had tight, stiff pressured upper body pain RIGHT before their period? (I wound up getting my period on Wednesday instead of Monday) it's also important to note, I have had EXCRUCIATING cramps for the past 5 months like beyond comprehension pain. And this pain happened before my period and during this period I had NO cramps really at all?????

(P.s. my doctor knows, I'm getting a gallbladder scan on Monday just in case and I gave an endoscopy scheduled for May 10th also just incase but I was curious as to if this could be Endo related since it happened in relation to my period)

TLDR - question for current/past visanne takers about mood - if side effects like depression happened, how fast and how deep did it come on? if suicidal thoughts came on, how quickly were you able to pull yourself out of it/stop medication?

my gyno has been asking me to go on visanne for almost a year now. i picked up the (very expensive) prescription and it has been sitting on my counter for months untouched. i actually do not have endo, i’m dealing with a large fibroid that i’m in the process of being scheduled for removal (myectomy). this fibroid had caused many issues over the last 4 years, namely extremely heavy periods, for which i’ve been having iron infusions to improve my anemia, and very painful periods, though not to an “endo” level by my judgment, but my gyn has prescribed monthly pain meds.

visanne was brought up as a “necessary” step to lessen my bleeding/stop my periods altogether pre surgery. i’ve been skeptical of visanne for many reasons, but the big ones are:

• i’m extremely prone to/have ongoing mood issues (anxiety/depression) and have been suicidal in the past (not related to taking a medication)
• my iron infusions are working and my blood levels are now where they should be (important to note that i have 0 side effects from my iron infusions, and i pay for them myself, so it’s been particularly frustrating to have my hematologist also intensely pressure me into hormone meds)
• it says on the visanne pamphlet that it can actually cause fibroids to grow (my own has grown to the point now where it’s causing many issues - bowel, bladder - and i cannot imagine it getting any bigger before i’m in an emergency situation)
• there’s a risk of bleeding getting heavier? (something i truly can’t imagine)

i’ve read though the countless visanne posts on reddit, and when i see the many positive comments i think “that could be me” but then i’ll think about the above side effects. also, i understand about visanne being prescribed for endo pain relief, but that’s not why it’s being recommended for me, so i go back to thinking if the side effects would really be worth it. any stories/experience would be greatly appreciated!

i’ve struggled with highly painful periods for the past 9 years and recently finally found a doctor who took it seriously and said it sounded like endometriosis, and then ordered bloodwork and an ultrasound. i did both and she told me they needed to be repeated to monitor abnormal results, but after doing a third bloodwork and having really low iron/high platelets the doctor told me to contact my primary care physician about that, and ordered a third ultrasound. i guess my question is: is this normal for trying to get diagnosed ?? i haven’t had really any communication with the doctor between the tests other than messages on the portal to schedule more labs, so i don’t even know what they’re finding and/or monitoring. doing all this lab work is racking up co-pays and taking up time which is stressful to keep doing as a grad student so i don’t know whether i should try speaking with another doctor or if this is normal ?

has anyone had hormonal birth control pills (and depo) not work on them but had success with an IUD? i gained weight and had my mood fucked with on the hormonal BCs, and while they made my periods regular and light they didn’t help my cramps whatsoever. i’m worried than an IUD would just be the same thing all over again.

how do i bring up uterine ablation to my gynecologist? i’ve tried a bunch of birth controls and am currently on orilissa but it’s messing with my moods. my gyno has offered exploratory surgery (or something like that??) to determine if i have endometriosis but i really want to get something that’ll help my periods rather than just going in for a diagnosis. how do i bring up wanting uterine ablation? what parts of it should i be concerned abt? i’ve done research on it and think it could be a good choice. i’m only 19, could that be a problem?

How do you guys handle the back pain associated with endo? I got mine excised almost 4 years ago but I still have terrible back pain.

Hello everyone,

I was diagnosed with stage 4 endometriosis about a month and a half ago because I had to undergo an emergency surgery for a ruptured endometrioma. However, prior to the surgery I only get pain during the first day of my period only. My period usually lasts about 6-7 days which is considered within the normal range. I know a lot of women are in pain because of it. I just wanted to ask if anyone experiences the same thing and what are you diet and supplements that you’re taking-if you’re taking any. I would love to have some advice on what to eat and look for going forward. I’m strongly against birth control and the doctors are really pushing it for me but I’m leaning for towards going the holistic route. Please share your thoughts! I thank you all so much in advance

I met with the surgeon on Friday, following my MRI and canceled excision surgery.

I have a history of child SA. It is documented in my chart. My husband will be with me. But to help ease my anxiety can some of you who have had a colonoscopy share your experience?

We are doing this to see if I need a resection or if we can just shave or cut off the nodule/lesion on my sigmoid colon, while doing my excision.

Thank you!

Anyone feel like they have to just keep peeing and peeing after they have sex? My bladder just goes into over drive

Before my surgary last year I was found to have a slightly elevated BP. Now after a row of covid, and some stuff, I am put on BP meds.

First dose friday, second dose today saturday.

I slept really bad, and got weird cramps in the night. I usually have most of my pain happening on the middle to left side. This night I was having cramping starting in the middle/uterus, and moving right, and down my right leg.

Its ACE kind of BP meds I think. It relaxes and widens/soften up the veins I think.

I can see how potentially it could trigger some pain, muscle pain is one of the rarer (10/10000) side effects, and I am known to often be one of the «lucky» ones who get the rarer sideeffects.

I just wanted to know if anyone here with endo have had increased cramping happening with starting meds for high BP?

Hi all, I posted a few days ago about how I felt super helpless about the healing process. Here I am, day 5 after getting my ovarian suspension out and I feel like a new person (who knew the ovarian suspensions was the biggest contributor to my pain). However, I am sooo swollen. My hips and lower back are puffy and so uncomfortable. Is there anything that can help this other than ice and changing positions? I realize laying on my back for the first 4 days didn’t really help the issue. Did anyone else have that?? How long did it take to go away?

A few months ago, as my IUD neared the end of it's time, I started experiencing severe pelvic pain like nothing I've ever experienced. After a number of tests to rule out other things (met my deductible pretty darn fast this year), my primary care doc and I think endo is the correct diagnosis. The gyno who put in my new IUD agrees.

After I had my IUD replaced, my symptoms pretty much completely stopped. I feel extremely lucky with this! My doctors seem to think if the symptoms are under control, that's all that matters.

But my question to all of you: am I potentially setting myself up for more severe endo* in the future if I don't keep exploring treatment now (other than controlling my symptoms)? It's so hard to find good information.

I also want to thank this community - it literally kept me sane for the last couple of months.

*Fertility aside, I'm 43 and not having kids.

Hello! Will try to keep this as short as possible but looking for any advice on what my next steps might be.

I’ve been symptomatic since my teens, having ovarian cysts rupture and extreme pain episodes during my period. Over the past 8 years my symptoms continued to get worse and more frequent, a lot of cramping, pain with sex and exercise, aversion to alcohol etc.

I finally had a lap in Nov 2023, and the doctor told me he didn’t find any endo (!) However, they removed one of my fallopian tubes that was fluid filled without an explanation of how it got this way.

Basically post lap he felt like I did not have endo and told me to explore IBS as a primary issue instead. Personally I feel like there is something gynaecological going on still but at his request I started seeing an IBS specialist and felt like paying more attention to my food and bowel movements has helped with daily pain and bloating HOWEVER…

I’m still having these random episodes during ovulation and I don’t know what is causing them. It starts with cramps in my pelvic area, nausea and very low appetite for a few days. By day 3 the cramps get really intense and build up to a 3-4 hours episode where my body clears everything out (vomiting, diarrhea). The pain with the bowel movements in my abdomen is like a 10/10 and makes my legs shake and feel like I’m going to pass out 😩.

Wondering if anyone has experienced this and if they have connected it to anything? My thoughts are maybe it is cysts rupturing or some kind of flair up related to hormones?

Thanks for reading, any replies would be so appreciated 🫶

Heyo, I really need some support and advice here. Every doctor I’ve seen is useless and I figure getting experiences from people who go through it would be a good idea.

Essentially, I’ve seen a lot of women go through some really awful stuff (liver tumours, bone problems etc) after being on birth control for a long time. I’m really scared of that happening and unsure of what to do.

I’m currently 21 and was put on birth control at 18 after having surgery for endo. I’m on Yaz, and it has actually been really good. No side effects or anything apart from maybe being more depressed and stuff but my pain is so much better. I go 3 months without a period as instructed by my surgeon, but I honestly worry if this could lead to issues in the future.

I hate having to go through this and having so much anxiety over it. Do I go cold turkey and potentially go through extreme pain every month? Do I stay on it? Do I try other pills that could potentially give me bad side effects? I’m really stuck.

my gyno has prescribed me meloxicam and nabumetone for the pain associated with endo, but neither of them really work, even compared to tylenol smh.

do any of you have suggestions on a painkiller or painkillers that work best for you ?

Hi everyone, I’ve just got a letter through for a laparascopy appointment and it is about 3 months before my wedding. What do you guys think, will this be enough time to recover or would I be best waiting until afterwards?

Hi! So I’ve been doom scrolling this group for a minute because last night I had the worst period symptoms of my life.

A few months ago I went to the ER 2 times because it felt like my appendix was about to burst and they told me it was just a stomach ache. Ever since then I have noticed a significant change in my period symptoms. More pain than before, nausea, a heavier flow, then last night I had to leave my friend’s 21st birthday because the pain had gotten so bad.

It felt comparable to the stomach flu. Like my whole abdomen was cramping and most of the time when I went to poop I couldn’t because of how painful it was to the point where I thought I was going to puke. That feeling comes in waves but overall there has been this pressure building in my back and pelvis area too.

I’m just really confused by it because I’ve never had these symptoms before expect for my ER trips months ago. I’m planning on going to a doctor soon but I wanted to ask if this sounded familiar to anyone in here with Endo. I want to know if this is something I should consider but I’m not sure, I don’t want to come off as dramatic to my doctors lol. I will appreciate any advice thank you!

Hey all, I dont want this to come across as self promotion but I recently went on a podcast and shared my experience of trying to get an Endo diagnosis in Ireland. I personally love hearing long form content of others and listening to their stories and it really helps me feel heard and that I am not alone. Its ovo completely free and I thought I would share here incase it brings either comfort or a few laughs to the amazing people in this community.

https://podcasts.apple.com/ie/podcast/catch-up-with-pastiche/id1612666687?i=1000650794688

Hi all, has anyone had a PSN and experienced vaginal dryness? Sorry if this is TMI, but I had surgery a little over 6 weeks ago and ever since I’ve had terrible vaginal dryness. I have little to no lubrication whatsoever, and even trying to have sex is impossible. Even with arousal there’s nothing. I’m scared I’m stuck like this forever. For anyone who experienced this, did you get lubrication back over time?

Can this be done? Can I find a good specialist and request them for the surgery?

I've been put on the waiting list for a laparoscopy. Might take a year. But how do I make sure that the person doing my lap is an endo specialist?

Please share any experiences with the NHS about this. Thank you!

So this has started happening recently. I get intense cramps on days 1 and 2 of my period. I've been managing them with a TENS machine. But since a few months now the pain radiates to my bxm hole. It gets better if I'm not sitting..

I'm so genuinely tired, and defeated. I thought I found a method to help me. I was feeling better. Hopeful. Then this. It never lasts long, does it? Any break we all get. It doesn't last. There's no fucking way out. No one cares about us, why isn't there better treatment options? Why is something that is referred to as a silent cancer, not even treatable? I'm so tired. I suffer from suicidal ideation, and this disease is a taunting demon. Anytime I have a moment of relief, it is ripped away from me, time and time again.

Also, 'I can't carry this anymore' by Anson Seabra is amazing. The hook fits how I feel.

Sorry for venting. But. I can't. 💛

Hey there! Longer version below ... but the abridged version is: Has anyone taken Myfembree for suspected endo?

I've had issues since I was a teenage ... long heavy periods with large clots (decidual casts are fun!), debilitating cramps, pelvic pain and back pain regardless of whether I'm on my period, stomach and bowel issues, bladder troubles, painful penetration (or failed attempts at such). I've had ovarian cysts and uterine polyps in the past as well, but none presently, according to a recent ultrasound

After years of saying to drs "I know my body and something is wrong," I finally have a new gynecologist who seems to hear me. She prescribed myfembree and said she'd if I found relief on it, she'd be confident saying I have endometriosis (she said my symptoms, history, etc are all spot on what she'd expect to see, as well). I had a transvaginal ultrasound about a month ago, and it kicked off days of terrible pain that landed me in the ER. Thankfully, they were wonderful and helped manage the pain.

Since starting the meds a month ago, my pain has gotten maybe a tiny bit better? But it hasn't been the saving grace I was hoping for (I may have been overly optimistic). I'm still having almost daily cramps and pelvic pain that radiates into my back.

My follow-up isnt for another 6 weeks or so ... but my mind is racing. Given that the meds haven't eliminated my pain, does that mean I may not have endo after all? Maybe I'm just broken? Do I keep pushing for answers and a diagnosis? I just keep wondering what happens if they do a surgery to diagnose and don't find anything ... does that mean it's just all in my head?

Sorry for the long post, but I'll take any insight I can get. Thank you!!

Catching up with old friends who I haven’t seen since right after my first excision surgery in 2021. One of them comments to the other “didn’t you deal with that (endo)? How are you now?” And the other friend says she just kind of made it go away with lifestyle changes. I’ll be with them all weekend and I just don’t have the energy to challenge that statement. I’m in the midst of ruling out any other source of my chronic nerve and musculoskeletal pain before I go back in for surgery because we don’t want to cause more nerve damage and scarring, but my uterus is now tethered to my bowels so that’s fun.

Just had my first lap to remove endo tissue and cysts. I was wondering how long this has lasted for others? How long until your symptoms returned?

I am happy to announce that I’ve been in some sort of remission from endometriosis for one year, and that’s all thanks to Norethisterone.

I remember being so scared to take it because people had always told me that there was weight gain and mental health issues, among other symptoms, and I was terrified.

I think when you’re dealing with endometriosis, it’s so easy to get lost in the negatives and the poor experiences others have had, which really clouded my judgment and made it hard to trust my doctor.

Yes, it’s super important to be an advocate and know your options and their implications, but I was so scared that it really messed with my judgment because I kept hearing all this negativity.

Finally, I said, "You know what, I trust my doctor," and the worst thing would be to stop the medicine. I’m happy I persisted because, to be honest, it was really hard—my body went into some kind of menopause.

There’s a lot of studies to support that sometimes your body stops making estrogen because it’s been chemically suppressed for so long, and that is what happened to me.

I had been on birth control for the majority of my life, and my body did not know how to make estrogen, so I experienced horrible symptoms like joint pain, bone pain, wrist pain, anxiety, acne, and TMJ.

It was so bad my jaw locked shut for months. I joined a clinical trial, and I’m still in it actually. Being a self-advocate, I made the connection that these issues only started after getting off estrogen, so I went to my doctor.

I knew the symptoms I was having were crazy, and we worked together. I asked for estrogen, and we found a solution. I went for the patch, and there was so much relief, but I wondered if increasing the dosage would make my life even better, and it did.

I took the risk, knowing that endometriosis and estrogen don’t get along, but I am super happy I took that leap of faith.

Now, I’ve had good days and bad days in terms of menopause symptoms and issues with the patch. I found alternating between my buttocks and stomach every few weeks to be good to ensure I’m getting that estrogen.

I really feel like I’m in a good place, and yes, I still have endometriosis pain, but it doesn’t impact my life at all.

It’s just sometimes a slight ache in my usual spots, but I can’t even put it on a one to ten scale. It’s just more there.

I know the medicine is a Band-Aid, and the disease is still there, but I’m able to live life not curled up in a ball in my bed or crying.

My life has changed, and I’m so happy I took the leap of faith to trust my doctor and her recommendations because I am pain-free.

I am living life to the fullest without health issues, and it feels amazing. I’m posting again because I want to give people hope.

For reference, I had surgery in 2020, which was a combination of ablation and excision.

I was pain-free for almost three years, and then I was in pain for about six months before I found out about this medication and switched doctors.

So, I am really hoping I can continue to ride out this pain-free wave for as long as possible, and if it runs out, hopefully there will be other options.

I would also like to mention that I am on a very low dosage, which makes me happy to know that I can still increase the dosage.

The only side effect, which you may think is silly, is greasy hair.

If I do not shower every day, it’s bad. That is the one downside of this medication.

If I could pinpoint a negative, it would be greasy hair, but I’ll take greasy hair every day in return for being pain-free.

I offer this post as a glimpse of hope for those who feel like they’ve exhausted all options.

Check out Norethisterone, do your own research, and talk to your doctor about it if it’s a viable option.

I just hope things get better for everyone. Thank you.