Treatment guidelines and analysis

Yesterday i had a appointment with endo doc and he suggested me to get married . i was surpprised to listen the word marriage . I asked him the reason behind it . He told me that conceiving kids at younger age with endo has higher changes then in ur 30's . The moment i heard this , something changed within me. Even the educated ones don't have empathy towrds patients like me. We women are being treated as baby machines..!!! I agree every woman at some point has dreamed of having a child of her own . I also had the same dream. But my perspective has changed. Dammit ..........Why people can't understand one simple thing ??????????????????????

PAIN CHANGES A PERSON ...!!! Because pain deamds to be felt . The advice that was coming from the doc who have been surrounded by pain of women by proffession . I am SPEECHLESSS....!!!!!!!!!!

My blood is BOILING 😡🤬 it’s ridiculous that I can’t get the surgery cost without telling them what birth control I want inserted !!! I’ve been on birth control when I was younger and it never helped AT ALL!!! Yet I am being FORCED to go on it again when all it does it make me crazy .

I am ADHD medications and take Kolonopin for my panic attacks , these medications help me significantly and I am so frustrated that I am being forced to take birth control which won’t help me and only turn my life upside down when I have found stability.

Has anyone else dealt with this ? 😞 what method should I tell them ? They won’t listen and are basically forcing birthcontrol on me

I’ve recently been diagnosed with endometriosis following an MRI and ultrasound, which showed an endometrioma (cyst) on my ovary and adhesions causing some of my organs to stick together.

While I’m waiting for surgery, my gynaecologist has recommended Dienogest, explaining that it can help suppress endometriosis and reduce symptoms. However, I’ve come across quite a few horror stories about it, so I’m feeling a little apprehensive.
My GP previously prescribed Slynd (a progestogen-only pill) to help manage my symptoms, but from what I’ve been reading, I’m a bit confused about the differences between the two, particularly when it comes to managing symptoms versus suppressing the endometriosis itself.

For context, my symptoms include severe pelvic pain, fatigue, brain fog, vestibular migraines (with dizziness), acne and other symptoms.

I’d really appreciate hearing from anyone who has experience taking either Dienogest or Slynd, particularly if you’ve tried both. How did you find them in terms of symptom relief, side effects, and overall quality of life? Also if either helped reduce endo growth? Did one work better for you than the other? I know everyone’s body reacts differently, but I’d love to hear about your personal experiences to help me make a more informed decision. Thank you!

I had my diagnostic laparoscopy yesterday, I was so nervous and excited to just get them to take a look at my uterosacral ligament and take the endometriosis out. I had to do a DIE scan back in May. The specialist who did it and the doctors at the hospital had confirmed that there was endometriosis present on my left ligament. Pre-op I was treated absolutely greatly and with dignity up until I met the anaesthesiologist. He didn't introduce himself, he grabbed my arm and I looked over at him and said "hey mate are you the anaesthesiologist? My name is ...." He looked at me and said "oh yeah, my name is..." He said he was giving me something for my nerves, not informing me it was the anaesthetic and I went lights out.

Woke up post op seeing a nurse and asked if they got it out, she looked at me and said I was clear and had absolutely no endo. I stared at her in awe and started crying and asking for my sister. She proceeded to tell me that crying was going to make my pain worse and that I should be happy it wasn't endo, because people are actually suffering from it. I asked if they looked at the ligament or if I could talk to the specialist and they said there was no need and that I didn't have it. I asked for the pictures from the procedure and was told I'd get it at discharge. I did not. The discharge lounge was worse. I was told prior by the attending I would be given adequate pain medication afterwards. I was told by the nurse that due to me not being a bloke I couldn't be given pain medication.

I cannot wait for the opportunity to see the private specialist, as after looking at the post op notes it mentions nothing about the observation of my ligaments.

I have been “flaring” now on and off for a year after having my second surgery last year (surgeon found stage 4 endo, deep infiltrating & Adenomyosis). I have an incredible medical team and so many resources, however I am STUCK.

I have been stuck in a pain loop everyday now for twelve months. At worst my pain makes me black out, lose control of my bladder/bowels, vomit, unable to walk etc. and then ultimately ER visit with a lot of morphine and fentanyl before it breaks. At my “everyday” level of around a 4-5 pain, I have constant stabbing pains, deep aches, leg pain, pin pricks all over my body, aching joints in every part of my body, sensitive skin, sciatica pain, numbness and a feeling of “on fire” in my joints & limbs.

I know this is a lot of info and I’m not 100% sure what I’m looking for….but I am at the end of my rope. Everytime central sensitisation is mentioned by specialists I feel as though it is negating the horrible effects of endo and adeno. I know all pain is from the brain, but it makes me feel as though it’s all in my head- does anyone else feel this way? If so, any tips for managing/telling the difference between genuine endo pain & central sensitisation?

Hello, I’m from the UK for context.

I have my surgery this Monday, I’m all clear and ready to go. However, I’m beside myself about what I need etc.

For context - I have had keyhole in 2017 after my daughter was born, and they found a ruptured ovary and blood filled cysts that needed clearing from my pelvis.

Scans over the past 10 years nearly have always revealed fluid in pelvis but no endo. Despite me meeting every symptom.

I have flare days/weeks where my pelvic pain is so bad I can’t stand. Had chronic gut issues that can’t be explained and I was anemic for most of these 9 years until I’ve been on the depot.

Depot helps but I still get the pelvic flares and hips etc.

I’m worried they will say there’s nothing there/wrong with me (yes I know I’m silly) and I’ve got a list but is there anything anyone would recommend buying that’s helped them the most please? Or any advice.

Thanks all, this group has helped me since I’ve got my date.

I started taking dienogest a week ago, and the first 4 days were honestly the best sleep of my life! I’ve struggled with sleep for a while, so waking up feeling genuinely rested and seeing such a big improvement in my energy levels was incredible. But the past 3 nights have been horrible again.

Has anyone else experienced such a drastic change in sleep when starting dienogest? Is it normal for the effects to fluctuate like this, and does sleep generally stabilize after 1-3 months?

I want that deep, rejuvenating sleep back so badly. Those first 4 days were life-changing, and now I know what I’ve been missing! Has anyone gone through something similar? Did it get better with time?

Hi everyone! ❤️
I’m currently 1.5 weeks post-op from robotic surgery for endometriosis. They found a 4 cm cyst, and my bowel and ovary were adhered to each other. Thankfully, the surgery went well, they successfully removed the cyst, and I’m recovering really well!
My bowel movements are normal, I’m walking regularly, and I feel absolutely fine overall. However, I have a few questions for those who’ve been through something similar:

Gym and strength training: I’m desperately missing the gym! 😭 When were you able to return to working out after robotic endometriosis surgery? Did you start with light workouts, or did you wait until the 4–6 week mark or until your surgeon cleared you?

Sleeping on your stomach: When did you feel comfortable sleeping on your stomach again? I really miss sleeping in my usual position!

Stitches: I’m 1.5 weeks post-op, and my stitches haven’t come off yet. How long did yours take to dissolve or fall off? Did you need to get them removed?

Bending: My doctor told me to take bending slowly, but I’m confused about what that actually means. 😅 How cautious were you? For example, could you bend to pick something up from the floor, wear pants, or reach down to put on shoes? Did you avoid bending completely or just avoid sudden/deep bending and straining?

Food cravings: My bowel movements are fine, and I’m craving nachos so badly! 🥲 How soon did you return to eating your usual foods after surgery? Did you have any foods you avoided during recovery?

Walking: I’m walking, but I don’t feel satisfied with just walking because I’m used to strength training. How did you cope with the frustration of being unable to exercise during recovery?

I know recovery varies depending on what was done during surgery, especially when bowel adhesions are involved. I’ll follow my surgeon’s instructions, but I’d love to hear about your personal recovery experiences.

If you had a similar surgery involving an ovarian cyst and bowel adhesions, I’d especially love to hear how your first 2–6 weeks went! ❤️

Also, if anyone has any doubts or questions about the robotic surgery procedure itself, I’d be happy to help based on my experience! ❤️🫶🏻

Thank you! 🫶🏻

first thing because I really wish someone had told me about this sooner ::look into endometriosis mapping and see if there’s anyone near you who does it

it’s not the same as the regular pelvic ultrasound most of us have had. it’s specialized imaging where they specifically look for signs of endometriosis/deep endo and map where they see it. depending on where you go it can be done with a specialized ultrasound or MRI. definitely worth looking into especially if you’ve had a “normal” ultrasound but you’re still having symptoms. it can’t rule out endo completely but I had no idea this was even a thing until recently

also wanted to share a few things that have actually helped me because I feel like I’m constantly searching reddit when I’m having a flare

the biggest one has probably been changing how I eat. not saying an anti inflammatory diet cures endo obviously but I can tell a huge difference in my bloating/inflammation and even my pain when I’m eating better vs when I’m eating like shit for a few days

TENS unit has also been amazing. I use it mostly on my lower stomach or lower back and sometimes use it with a heating pad when the cramps are really bad

heating pad is honestly just permanently part of my life at this point lol

and thc/cbg gummies have helped me a lot too especially when I’m having one of those nights where my whole body just feels tense from being in pain. obviously everyone reacts differently to thc but for me it’s been really helpful

none of this has gotten rid of my endo or anything. I just feel like I finally have a few things I can reach for when I’m having a bad day instead of feeling completely helpless

curious what everyone else swears by or what you wish you knew sooner

I am not actually diagnosed with endometriosis yet, I have done the ultrasounds but unfortunately they couldn't be 100% sure if I had endometriosis or not, I might have surgery to actually find out but in the mean time I have very severe symptoms which are very hard to manage:( I usually get a really faint, and or unbearable stomache pains, I found waterbottle or heat can sort of help and postponuns but nothing else seems to help me

My sister has just been diagnosed with stage 4 endometriosis. She has been struggling for years but the doctors kept missing it.

I don’t know the full extent but from what I understand her lower organs are not where they should be and she is on a waiting list for surgery.

I always try to see the positives of a situation but i have been reading up online and it is just upsetting me.

She hasn’t had the easiest start to life and has been through a lot. She is still young (27) and I just want to see her happy and comfortable.

What is some important information that I should know to help her through this and take into consideration ?

Thank you

And that phrase is "there's an element of chronic pain involved." So apparently chronic pain is what's going on with me. They've declined an ultrasound to check if anything has changed since last month, despite coming in 2 weeks ago practically screaming in pain from what I thought was ovarian torsion, and turned out to be a ruptured cyst.

Then again last night, similar pain, left and right ovaries, pain shifting around but settled back to the ovary area. 12 hours since it started, and they have done a blood test and an ECG because they didn't like my pulse being as high as it was - during a pain spike. They want to refer me to the chronic pain clinic who already said they don't do gynecological pain.

Keep up the OTC pain remedies and see your GP for that chronic pain referral.

It seems like a common thread with endo is that we doubt whether we have endo and/or whether the pain is real. I’ve been trying to understand why that is.

I get the doubting whether it’s endo until we have the surgery because that’s the only surefire way, but it seems like there’s also a strong doubt about whether our pain is bad enough, or legitimate.

For me, I doubt myself because I’ll be feeling utterly miserable for a day (or week!) and then it’s like a switch flips and I feel completely normal… for instance, it used to be that my period would make me a wreck and then as soon as I stopped bleeding, it was like a cloak was removed and I felt human again. Feels amazing!! The shift happens so quickly.

Now the pain occurs outside of my period and the distinction is less dramatic, but still occurs. Once I’m feeling better, my brain nearly forgets that I was writhing around, nonfunctional, existing on a heat pad that is burning my skin, extreme fatigue, pain all over.

Is that what happens to others, or do you have a different experience that makes you doubt your pain / endo?

Thanks for your input! Wishing everyone health and healing! 💕

Hi! I have been taking dienogest (Dimetrum) since a year now. On my latest MRI my cyst went from 6 to 4 cm and other lesions were gone.
My current problem is the fact that I feel like all the side effects that I had from the beginning are coming back : sore breast, back ache and pelvic pain. I am seeing my specialist in march so I wonder if this happened to anyone ? Thanks :)

Right now, it’s day 5 of my period. I’m stage 2 endo, excised in 2024 but it’s growing back, I know it. I feel it. Right now, it feels like there is barbed wire lit on fire in my abdomen. It’s pulling on the left side. Lightning pain up the ass. I am catatonic and in tears every half an hour.

My (ex) husband and I recently separated and I’ve been living alone with my 19m daughter for a month. I’m adjusting to it all - the single life, the living alone, the fears of what if I become unwell. Two nights ago I even had to call my ex over to look after her because I was on the brink of calling an ambulance due to pain.

Usually, my daughter spends Monday and Tuesday with her grandparents so I can work (ex works full time). Well today it’s Wednesday and I’ve had to call in their help again because I’m so unwell. I hate asking for help. They’re also my ex’s parents. They’re happy to oblige, and they love her so much, but I feel guilty. Grandma’s own mother is having a surgery today, so it wasn’t ideal that I also need help. So they’re juggling a toddler and a sick elderly person. I also feel guilty for my baby. I am very hands on with her and love doing things together and I hate that she has to see me in this state. I don’t want her to think I’m weak and incapable, I don’t want her to resent me for this.

I’m worried. In the separation I’m scared they’ll call me an unfit mother. I’m not. I’m her primary carer, she does not do overnights - she stays with me every night. And usually it’s not an issue unless my period or my endo is flaring. It’s only gotten this bad again in the last 6 months. I’m currently in a ball on the couch with only enough energy to type this. I just need reassurance. I’m trying my absolute best. I’m sick of the endometriosis holding me back.

Hello there, I am 22 and just had a diagnostic laparoscopy on October 14th, 2026. My periods were always bad, but they got especially bad over the past 2 years.

I had terrible, terrible mood swings (to the point where I had to get help for it), having terrible bouts of random constipation and diarrhea, and of course terrible cramps, about a 7 or 8 on the pain scale. I have an IUD in, so it is very hard to tell if I am on my period or not due to the lack of bleeding.

I am very lucky my mother works with obgyn's for a living, and I had access to two very great surgeons. The surgery went fine; they didn't find anything except an epiploic on my bowel, aka a little weird lump. Which was baffling because they have never seen it in someone as young as I am for this.

They brought in the general surgeon to take a look, and he told them to "Leave it in; it's benign." They didn't listen to him and removed it anyway. Because:

1.) My symptoms were heavily related to my bowels

2.) Endometriosis could be hiding inside or under it

3.) I was already cut open on the table; might as well just remove it

Which turns out it was a good thing because after they sent it to pathology, it was filled with endometriosis.

Now here I am 2 weeks later, on my period; mood swings are now manageable, no diarrhea, and the pain has gone down to a 4 and is now more surface-level (Advil actually works on cramps now!). They also lack the twisting sensation, which is theorized to have been from the epiploic actually twisting because it was attached strangely to my bowel from the way the scar tissue is.

I mostly wanted to post this to show that even in surgery it sometimes can be missed because of things like this. I am very grateful that I had doctors who listened to me and that they ignored the General Surgeon. And to my fellow sufferers of endometriosis-related symptoms, I hope you get treated and listened to. I am so grateful I was; hopefully it doesn't come back, but if it does, I have a good team behind me.

Had my hysterectomy this morning and they planned to do excision if they found endometriosis. Adenomyosis was confirmed via contrast MRI before this surgery. And now post surgery it’s confirmed that I also have endometriosis.

This has taken almost 11 years, including medical gaslighting, and even self gaslighting. To finally have answers has me in tears. Happy tears to have answers finally.

Thank you to this community for sharing everything you do, I’ve learned so much from all of you who share information and it helped me get to this moment. ❤️

Hello everyone!! Please help- I have persistent gut pain, bloating and feel pressure when needing to pee.
I got a TENS device and otherwise use heat packs and CBD oil. Any tips or suggestions?

My gut is getting triggered even while keeping gluten free, dairy free and low FODMAP except for coffee. I feel without it I keep getting hunger pangs and my stomach pain is much worser when I am hungry. I am talking in between meals and not fasting. I used to aim for 20g of fiber daily but now I am unsure what to do. I gained 7 kgs and I am now overweight.

I have Deep Infiltrative Endometriosis, PCOS and adenomyosis. My ultrasound showed a bowel lesion.

I am going to see my GP next week. But unsure if she is going to be helpful.

Im currently having a flair or something, idk, i got diagnosed with an endometrioma I have a cyst on my left ovary thats been causing me pain for a long time. But it's getting worse and im having these attacks, sometimes theyre triggered with sex but this one wasnt caused by anything. Im on slynd continuously to not have periods anymore and my symptoms have just been getting worse and my cyst has grown since last time it was observed during ultrasound. Everytime i get this horrible pain in my left ovary/everywhere in my lower stomach my mind and body are screaming to go to the ER because i can barely walk and pain meds dont touch it. It's a 10/10 pain. But ive felt so invalidated by doctors and ik they cant do anything to help. Also the pain eventually goes away, so i feel like a dumbass for even showing up. But it feels like im gambling bc what if this time it doesnt? What if this time its really an emergency? I cant tell anymore what my body says is an emergency and what is endo pain. Im scared. Sorry im frantic im scared and i feel alone in this. Im so tired of having these attacks and im so scared because theyre becoming more and more common. One day ill have them almost everyday or something. Im terrified.

Ich wurde das erste Mal mit 13 hormonell eingestellt, mittlerweile bin ich 20. Mit 16 habe ich die Pille einmal für eineinhalb Jahre abgesetzt. In dieser Zeit hatte ich 300 Tage lang Blutungen, danach pendelte sich mein Zyklus ein, begleitet von all meinen Symptomen. Daraufhin habe ich wieder mit der Verhütung begonnen und befinde mich nun seit knapp einem Jahr im Langzeitzyklus, da ich trotz der Verhütung weiterhin regelmäßig Schmerzen hatte.
Ich habe großen Respekt davor, die Pille wieder abzusetzen, aber ich möchte mich endlich wieder wie ich selbst fühlen, eine Libido spüren, meinen Körper wahrnehmen und einfach ohne Hormone leben. Leider kann ich mir all die teuren Supplements nicht leisten, die überall angepriesen werden. Deshalb wüsste ich gerne, was wirklich essenziell ist und ob ich überhaupt absetzen sollte.
Ich habe gehört, dass die Schmerzen mit jedem Absetzen schlimmer werden sollen. Auch meine Nebensymtome, die ich beim letzten Absetzen erlebt habe, lassen mich zögern. Beim letzten Mal habe ich ohne ersichtlichen Grund 20 kg zugenommen, litt unter heftigen Entzündungen im ganzen Körper, vor allem in den Augen, Wassereinlagerungen, einer extremen Anfälligkeit für Infekte, depressiven Verstimmungen, Hitzewallungen und Schlafproblemen.

Ich hoffe, dass ihr mir vielleicht mit ein paar Erfahrungsberichten, Tipps oder sonstigem weiterhelfen könnt:)

Hello, my wife will be going in for a laparoscopy surgery to treat her endo here soon but I will be in another state due to work. I’m hoping to put a recovery or gift bag together to help her keep her spirits high during recovery. What would y’all want during recovery? We did already get her easy food and I do have a nurse and her mother that will help care for her as she recovers so that is taken care of at least. Any input is welcome!

I’ve been sick for several months after missing a depo shot that I was gonna come off of anyways and see a doctor on the 10th. I need recommendations of birth controls that may help until I can get surgery because I’m so sick all the time and I’m tired of it.

So I posted here about two weeks ago about a different pain than normal and didn’t go to the er then in fear of being dismissed and not getting any answers. Well I had the same pain starting this Saturday and toughened up and went to the er. They gave me fluids did blood test, urin tests and did an ultrasound trans abdominal and transvaginal(which was my first one and I was scared and very uncomfortable) but I was like maybe something will come from this. Welllllll nothing “everything appears normal” no ruptured cysts no torsion nothing. And I’m left here feeling defeated, crazy and just still in pain and I went through that stupid ultrasound for nothing. I’m so done I don’t know what to do anymore I’m only 20 and have been dealing with this for like 7 years and no one’s given me any concrete answers or solutions for the pain. I have college that I love doing but am missing bc of how much pain I’m in. Thank you for listening to my Ted talk.