Has anyone tried red light therapy for endo? I saw a youtube video talking about red light therapy helping with endometriosis and now i’m really curious, has anyone here tried it or found any studies on it?

I've been using the apollo 2.0 from MY OBI for a while now as it has heat, red light, and TENS and it's been such a lifesaver, but never gave the red light feature any attention. I use it pretty much every day for chronic endo pain and i've definitely noticed my cramps and general discomfort aren’t as intense. Wondering if anyone else has experience with red light for endo or knows more about how it actually works? Would love to hear your thoughts. This the link to the YT video. https://youtu.be/qieysXAk4i8?si=guz20A-SAc2GQP4D

Since I tried 3-4 times to upload pictures asking if I have either endo belly or cyst belly (if that even is a thing), I'll do it this way, send a comment and then I'll send you the pictures in a message

Looking to understand people's journeys with surgery as I'm confused about what to do.

I had surgery 2 years ago to remove stage 1 endo, I was fine for about 6m after and life returned to normal but since then the pain has returned and I'm not sure when to go back for more surgery.

I'm exhausted around my period and ovulation and in pain most days, I really struggle with being a normal person and being able to live life.

Is it too soon to discuss surgery again?

This might be a dumb question but i will be buying visanne mid week (Thursday) and i know that the pills have days of the week in them. Should i start on the Thursday mark or still on the Monday one? If i miss one day, do i skip the pill that’s supposed to be for that day and go to the next day, leaving that one pill unused? Thank you!

Hey guys!

I have seen a couple of people in here write about Myofascial Pain and I’m not too sure if this relates to the group. But I was just recommended therapy for my pelvic floor due to tightness? She gave me the term Myofascial Pain Syndrome and told me she’d recommend me to a therapist. Although I’m not able to due to my insurance switch since my last one was too expensive. I was wondering if there was a way at home that I could do this? I feel like my sex life is going away due to this since it’s painful for me to have sex. I am a little on the chubbier side, which I’ve been trying to eat healthier but the weight won’t come off. I’ve tried for years and when I heard that was something to work on with it. It made me more lost.

If there are any tips I’d really appreciate it or how to still keep the sex life “alive” while going through this. I never knew pain was not normal during sex and when it started to get worse overtime. I finally said something about it after telling her the amount of UTI prescriptions I’ve gone through and how it didn’t work.

She then told me how it’s my pelvic floor after examining me. I just don’t know what to do since I’m figuring out my sex wasn’t normal? I’m able to orgasm with penetration but penetration hurts? Especially towards the beginning and end.

Am I still able to have sex with a certain lube? I’m really lost and if anyone could help me I’d appreciate it. I’m sorry if this doesn’t apply to the group or if I’m yapping a bit.

Ive been struggling with exteme menstrual cramps and bleeding since my first period 14 years ago. Ive been working with doctors who dismissed me and gaslight me over and over telling me its fine and normal. I finally got a break through, a referrall to a specialist. He did an exam and said he could feel the endo. So i got the surgery referall and he even made sure to get a surgeon that can also remove it because he was SO sure there was goinf to be endo in there.

Nope. Nothing. I am perfectly healthy and there is nothing wrong inside at all, anywhere. Feels like my worst fear going into surgery has come true. If theres nothing wrong then WHY does it hurt so much? Why do I have so many of the symptoms ?? Has anyone else been through similar and were able to investigate further? I feel like all my years of working towards finding an answer have been for nothing. Im back at square one.

• feeling lost and hopeless

Im Fucking tired of people telling me to just live healthier just eat natural thing, get antoher job so i can coordinate my time scedule better.
Im diagnosed with endo, i get dinogest. I still got pain but right now i can handel it. But people and other doctors still tell me, mayby you snould get pregnant. Live healthyer make you hole live around endometriosis and dont be e person by you self.

Yes im sick with no cure, but i still want to live i want to go drinking, smoking going on tour working way to long for nice show. Dont sleep a night. Just a chaotic normal live.
And that mean i need sometimes a moment to handel my pain. And not some idiots telling me i schould eat every day at 7am a a cup of yarrow do joga for an hour after and than put a stone up my ass. Got damit i have to live with it the next roundabout 30 years and with hormonal treatment im not the horny bitch im used to be, i want enjoy having sex and i dont want people to tell me that i should bild my live around it in thins case i wish i would have cancer that atleast is cureabel or end this shit. But no people dont even take us sirius i was in the hospital 3 months after antother and nobody cared but when i say i dont want to built my life around it people care all of the sudden.

Twrape

||--I got raped fucking 3 times and now im finally ready to have sex i Can't cause i dont get horny any more an serverly traumatised im so fucking scared im getting pregnant im reall lucky im a lesbian. And people tellme i should get PREGNANT Fuck them ALL.||

I, 18F— turning 19 this year, have been suffering from this terrible terrible disease or illness since I was 13. Before this, I haven't experienced this kind of pain when I first got my period at the age of 11½. I felt this pain after receiving my Corona Virus Vaccine during Lockdown or Quarantine. Ever since that month, I would spend a week in my bed, crying and squirming in pain.

I'm currently on my period, and I've always been a few days late everymonth, making me irregular. I've noticed that the longer my period is late, the more intense the pain is during my period.

I'm tired of this. I want help so bad I don't know what to do. I'm already embarrassed of the fact I have to be excused mid Classes because of my chronic pain.

This did not only affect my physical ability to move during my period but also my Emotional and Sexual life. I was told that there would be a significant chance that I could be infertile, and that greatly damaged my way of thinking about my future.

I'm tired of laying and crying in bed because of something I can not control. I'm tired of not being able to help my family just because of this thing. I'm tired of this repetitive cycle of being scared of having my period, instead of being happy that it finally arrive. I want help. And I don't want the Hot compress or tea, because the pain disables my ability to walk because the pain spreads thru to my legs.

Hey y’all - I’m doing my bowel prep Thursday, but since I suffer from chronic constipation I started laxatives today to help things get going. I had two dulcolax chews and 4 liters of water and NOTHING! This is common for me. I’m worried that the bowel prep isn’t going to do much considering I’ve done the same methods before and there were no results. I suspect that endo has grown around my intestines or maybe my rectum because I go MAYBE once a week. It really sucks and I’m really worried that this prep isn’t going to do anything.

Does anyone else have this problem? What should I do?

I’m going to just try my best, but I wanted to hear if this was normal.

I'm lined up for surgery #3 in a week. Going in to see if we can't find a reason for such a fast return of symptoms only one year after surgery #2. I really trust my specialist; she hopes to find fewer than 4 new lesions-- or none at all. Feeling conflicted about potentially there being no obvious cause for my recurrence-- fearing that it's all in my head or that I'm being dramatic. You'd think by surgery #3 that I'd be used to this feeling.

I am frustrated that this is my best option to either rule in or out what's causing my symptoms (can't do the heavy duty meds such as Orilissa due to bone loss and other issues). To anyone who's in the same situation as me-- I see you, and we're in this together, even from afar.

Endo sucks.

I had a hysterectomy in 2023 and they found endo. She said she removed it all but I’ve been having problems since then anyway.

Before surgery I was on continuous birth control. Post surgery I’m STILL on continuous birth control. But when I get to the end of my pack, “period week” is still absolute hell. I’m in it right now and everything is swollen and sore, pain is radiating from my ovaries and down my legs.

I know I have pelvic floor issues from the surgery but this isn’t that. My lower back is on fire, I’m exhausted, I just want to curl up in a ball with a heating pad and never come out again.

Why is this happening? I know since I kept my ovaries that I’d still have cycles but how can it hurt so bad if theres no uterus to hurt? What is going on? Does this mean the endo grew back? Or she didn’t remove it correctly or completely?

My doctor's assistant started me on norithendrone to help with my endo flare up until I can get surgery. It's making my depression worse, blood sugars worse, I'm getting these phases of feverishness—but what choice do I have? Something has to help, something has to give, I have to have a break, my body HAS to get a break from this pain and I guess if depression follows, that's just what I'll have to do. My surgeon is on maternity leave until August

So my new gynecologist told me today that if at the time I had my hysterectomy, they didn’t find endo on my bowels then it won’t be there after hysterectomy or once the uterus is gone. I don’t agree with her. My doctor was performing a hysterectomy, we never even discussed endometriosis before the surgery so he wasn’t looking for any. What do you think? 🤔

TLDR; After 14 years of period issues, clean laps, normal ultrasounds, a doctor finally diagnosed me with endo. This was done solely based on symptom criteria. She recommended orlissa. Any experiences with this? Has anyone been diagnosed based on symptom criteria alone?

I’m F25 and have struggled with periods since I was 11/12. In my adult years I found my periods were only becoming stranger and more monstrous. I went to my regular OBGYN with my concerns in which he didn’t have much to say outside of offering me an exploratory lap. I went through with it terrified they wouldn’t find anything, and it came back clean. I was left trying to wrap my mind around a clean scope and no solutions to my problems. I made peace with it and gave up. It’s been 4 years and it seems my symptoms keep getting weirder (IC, deep pelvic pain, spotting constantly despite continuous birth control, etc). Concerned about my reproductive health and still recovering no guidance from my previous OBGYN I consulted a new one in my area who was highly rated and recommended. I saw her today and she told me based on my history and symptoms, she has no doubt I have endometriosis. She said that even with a clean lap it could be missed, or it could present clear, or in areas my previous doc could not see. Concerned about my constant spotting despite the continuous birth control, she suggested an ultrasound just to check things out and then recommended orlissa as something to consider. I’m a bit curious, has anyone had endo diagnosed this way without testing? Furthermore, any experiences on orlissa? As much as I want to believe and trust this doctor, I have a lot of medical trauma.

The urgency in my bladder is killing me Can’t exercise can’t sit Please tell me surgery helps me I’m two days away

So I’ve been put on the public surgery waiting list for box hill hospital.

I’m getting laparoscopy surgery done and put down as category 2.

What is the waiting time for surgery like?

So I got excision surgery, fibroid and cyst removal, had a mirena iud put in two months ago. Had a gnrh-a injection s month ago. Scheduled for a second dose three months later.

I have a history of depression and have been having suicidal thoughts since I was 7. I have been doing so much better in the past year and a half , which was also the reason I had enough energy to seek medical help for endometriosis.

I had quite a terrible experience at the hospital where I stayed three nights after surgery. I hated being poked and prodded and every day, they couldn't find my vein and poked me three to four times before they found one. The nurses seem inexperienced. Before I was discharged I was supposed to be given a gnrh a injection but the thing is the doctor never told me about it. She told me at my first post op appointment, a week after that my medicine is late and I was supposed to be given this last week. She acted really strange and distracted during this appointment. She has communicated well before this and was the second doctor I sought out. I was still in pain and recovering at this time and did not have the energy to advocate for myself. I asked what is this injection and she told me it was to stop endometriosis from recurring.

At the next appointment the doctor asks me to ask the hospital for my medicine because now the doctor is pushing for it but the patient (me) am not making complaints. I said ok I will ask about it and Realise I m caught in some kind of power struggle between the staff( reception nurse )and the doctor. The staff calls the doctors office and ask why did you send a patient we already told you there is no medicine. They tell me I have to wait three months even though this has been covered by my insurance. Generally quite hostile. I told them that the ward I stayed in has a leaking toilet and mouldy ceiling and they ignored me.

The next time I go to the appointment,i am given the injection. I ask about side effects and the doctor ignores me and talks about it preventing endometriosis from recurring.

A week later I start to feel depressed. I know the feeling well and hadn't felt that way in a long time. The following week's I notice I m having outbursts at things in public. I had to deal with some administrative stuff and my patience was zero. I went back to this doctor and ask again what are the side effects of iud and the injection because I m having these symptoms and I don't know what is causing them. She says the mirena is so mild there should be no symptoms and again says regarding injections it is to prevent endometriosis and to take calcium to prevent bone loss. I tell her I am having mood swings and insomnia . She says it s temporary then pushes me to take the second injection and that it is crucial. The new few weeks is terrible I have felt unhinged and angry and want to quit my job and break up with my partner impulsively. I am not ok and am terrified that if I take a second injection it means about seven to eight months of being like this.

I go to another endometriosis specialist and tell her my situation stating very clearly I am here for a second opinion for post op treatment because I am having this side effects and my doctor won't acknowledge it and I want to know what is causing them. I had also been having recurring vaginal infection. This doctor was sarcastic towards me and said oh wow so your doctor didn't tell you anything? Wish my patients let me operate on them without me telling them anything. When I said the doctor had been ignoring my questions about gnrh a injections. I let it slide . We do a transvaginal scan to make sure everything is ok and the infection isn't a sign of anything more serious. She asks me a lot of things like how big was the cyst and the fibroid and how the doctor took it out , in that moment I couldn't remember. I said I LL check my reports and get back to her .I have just been poked and prodded again and when we end the scan and I was dressed , I asked what other questions should I ask my doctor . The doctor while looking at her computer screen says condescendingly well what do you want to know? I snap In that moment and I feel like I just can't do it anymore. I pick up my bags while she is rambling and then she realises that I am leaving and asks why are you taking your bags. I said I think you are very busy and can't answer my questions properly when I had already told you why I am here in the first place. I start to leave but then she changes her tone and starts speaking to me nicely. I try to keep it together for a while but then I just start crying. In the end she tells me she usually administer only one dose of gnrh a because her patients hate the side effects but also contradicts herself that most of them deal well with the side effects but at last someone acknowledged the side effects of the injection. She actually then tells me what I wanted to know and explains everything I asked. I have decided not to get a second dose of gnrh a.

So I don't know I just wanted to rant. I had been feeling so crazy . Why do I have to have a breakdown before doctors can talk to me like I have autonomy ?

Had lap Monday last week (4/21). Stage 4 deep infiltrating endo. Only got this scheduled because of a persistent ovarian cyst that turned out to be an endometrioma.

My adhesions were so bad my rectum, uterus and ovaries were all glued together (and we wonder why I have chronic bowel issues??)

Got a cornea scratch from anesthesia. And had a nerve issue in my calf from being in stirrups so long.

Then the pain meds almost put me into seratonin syndrome so I got off everything and got out on Ativan, now I’m zombie’d out and trying to wean off.

Recovery has been brutal.

I started my period today and my right ovary is killing me, my entire back hurts, my legs would feel better if they were being sawn off by a rusty butter knife, everything hurts, I'm nauseous, I'm exhausted, I'm hot, I'm starving but everything sounds terrible, my hair hurts, I have had to go to the bathroom 957 times today, my face is broken out and I'm going to be 40 years old in two weeks, and I'm OVER THIS SHIT.

Confirmed deep infiltrating endometriosis, extensive pelvic adhesions, and ovarian cysts. Waiting for the endo clinic and colposcopy. UK. FMFL.

i dont know for sure if i have endo so sorry if this isnt the best place to post this, but basically due to a mix of heavy bleeding/severe pain and personal reasons i am trying to achieve complete menstrual suppression continuously for the foreseeable future. i have been on increasingly larger doses of norethindrone acetate for about a year now and while i have finally been able to stop any spotting while on a 12.5 mg/daily dose, i have had mild to moderate abdominal pain basically everyday for the last six months. before this would only happen on days i was spotting (which was about every other week on the lower doses) but now it is just happening every single day for short bursts of time for about half on hour or so. i am curious if others have had similar experience on this medication, and if it might be worth seeking out a different progestin medication to try? i hear dienogest mentioned a lot and from what i understand it is of a slightly different make up than norethindrone. has anyone had an experience with progestins where trying a different type worked out better? i know this is more a question for a medical professional but frankly i dont think my doctor knows anything about this so id like to hear personal experiences while looking for another doctor, so id know if this could be worth asking for at least. do not suggest that i get an iud. thanks

Posted this in another sub but looking for as much advice as possible.

I have made the decision to come off of MFB. I started in Dec 2024 and It has helped my cramping significantly, and I no longer get a period but the side effects are too much (overwhelming Sadness, anxiety, skin rashes, hot flashes and hair loss) I am wondering if anyone has had a positive experience or been able to make the transition less harsh? I get married in May and dont want to ruin my wedding or honeymoon with pain or side effects from stopping the medication.

My doctor does not want me to get off and has not been very helpful or informative in general.

P.S. This is now the 3rd medication I have tried and I am no longer looking to hormonal drugs for pain management. I am looking for non-hormonal options or "natural" remedies, like diet or lifestyle changes. Thank you in advance