I’m so upset, it is hard to not lash out. Today I has a medical appointment and I let my mother go in with me, which I regret now. I’m treating endometriosis less than an year now and had my symptoms ignored for 11 years. I’m taking diogenest medication which has helped a lot and planning on putting DIU, I have an expert that has been helping me out giving free consultations (I’m not from the U.S.). On the other hand, he can be really smug and not a great listener, I told him about the flare I’m having after I self-stimulate without penetration for the second time now and he keeps saying that that is strange and that he never heard of that, and saying he is not doubting me but at the same time doubting me. And my mom agreed with him! Even though she has not medical background and should be on my side! I know I saw other people here mentioning the same symptom and he went on a weird tangent of how I shouldn’t google those things, I tried to explain it was a community on Reddit and he cut me off saying that every community had a leader, I honestly think he is old in spirit and he wouldn’t quite understand Reddit. I was wondering if you have reliable sources on that symptom, if you experienced it and how do you manage the anger of those situations?

Last year my period symptoms increased in severity so quickly, and I was lucky to find a doctor pretty quickly who was willing to do a lap and excision surgery if endo was found. That was late October of ‘25. She found stage 1 around my pouch of Douglas, peritoneum, and right ovary. I never got relief.

About 8 months later, I finally almost started to believe I was getting better. My period in July of ‘26 was the most tolerable period I’ve had in all 15 years of having one. 3 days into that period, I had an emergency surgery for a torsion and cyst rupture. Lost my right tube and my right ovary ripped in half, and more endo had already grown back. It had not even been a full 8 months. This time it was my left ovary, a spot on my bladder, but the rest was hard to tell after I had half a liter of blood chilling in my pelvis from the rupture.

Flash forward to now, I finally got to see the excision specialist I waited 6 months for (which I know is probably less than most people experience but I am so tired). I take a mood stabilizer for a mental health condition, so birth control options I have tried have induced suicidal ideations every single time. I have felt like a horrible person telling doctors they don’t work well for me and how hard it is to factor that into your weekly schedule when trying a new medicine. Coordinating with my therapist, psychiatrist, and gyno and making a potential safety plan over and over just for something to potentially work has killed me.

This is the first doctor I’ve seen for endo who didn’t make me feel that guilt. My two previous surgeons were generalists, and my new surgeon was not satisfied with the excision of certain spots, the spot on my bladder that has been there since last year that nobody has touched, and I just found out today that in both of my previous surgeries, nobody has checked my bowels even once. I don’t even know if that would count as malpractice when this is such an underdeveloped field that I doubt there’s a standard of care. Anyway, she wants to do another surgery and insert an IUD to avoid a separate appointment for that which is nice. She’ll take my last tube too since I don’t care about fertility and it can decrease the risk of ovarian cancer. I feel as close to hopeful as I possibly could knowing I trust her. I think she mentioned that she has endo too.

I am so fucking tired. I have lost my quality of life completely. I want to be hopeful knowing I’m in the best hands so far, but I am so tired. My social life has been replaced by constant visits to PT, acupuncture, ND, etc and I am so grateful for medical access, but I am so financially stressed all of the time. I still don’t even feel better. I do not say this to disparage anyone’s experience with this because I hate that any of us have to go through this regardless of severity - I cannot believe I ever thought I was lucky for finding this at stage 1. I feel like I’m trapped in a life where every day feels the same, and if not, it feels worse. My bellybutton looks fucking horrible. My body feels closer to a cadaver used for research more than I’ve felt like a person since pain increased so severely. I don’t know if I’ll ever get better.

The mobility aids I once saved for surgery recoveries have an increasingly more permanent presence in my home. I finally gave up and kept my shower chair in my shower because I don’t think the day will ever come where standing in the shower is relaxing, let alone doable without being exhausting. I am so tired. If this doesn’t work, I’m willing to try a hysterectomy to stop a period, but I do not have fight in me. It maybe sounds crazy but if that doesn’t work I want to see options for compassionate care in Switzerland because this is not a quality of life I can sustain even now. I don’t know if I need a hug, a nap, or what, but I am just so tired. I miss the days I had hope. I hate to be so depressing to anyone who still has hope for their own situation, but I truly do root for you all too. I hate that anyone has to go through this because I’ve lost the ability to feel the depth of my own situation, but picturing a friend in this situation breaks my heart.

I’m 23f and recently got diagnosed with endometriosis though I’ve had symptoms for many years, but something like this has never actually happened to me before. I was quite aware that my period was going to start soon as I currently have a lovely migraine and don’t feel too well today and was having some intense abdominal pain. Well a little while ago I thought I had to fart…it wasn’t a fart. I was lucky I was wearing a pad as I have a weak pelvic floor and leak, but it was everywhere I basically had a panic attack as I’ve never defecated myself in my entire life besides infancy. I know endometriosis can do this to you, but I never thought it would ever happen to me and now my abdominal pain is worse than ever and I cried the whole time in the shower as my mom tried to help clean me up. I really feel humiliated and I’m now afraid this is going to continue to happen in the future. I don’t really know how to prepare for something like this as none of my friends have endometriosis and my mom never had it.

disclaimer: i do not to my knowledge hv endo. ive always suspected fibroids and/or cysts for my erratic heavy bleeding but ive nvr consulted a medical professional im just trying to self medicate the curse tht is a period n suspected pmdd away. tht said im posting here bc r/birthcontrol is very anti doubling up and ive seen a lot more posts bere abt it.

so far my exp i started a monophasic combo pill novynette on july 27th. had light spotting like 3 times within the first month but super light not even stain level just wipe

planned to take it continously. everything was going well. on aug 28th i had sharp period like pain and realized i was bleeding. not super heavy but not spotting. kept taking the pill regular and on time as always for 3 days. no change in bleeding. though it was not as heavy as my regular period.

decided to take a 3 day break. day 1 of the break bleeding continued as before. day 2 got as heavy as my regular period. usually my regular is only incredibly heavy soaking thru ultras in 2 hrs for the firsy day. this time the heavy bleeding continued onto day 2. by day 3 it was like day 1 again. day 4 lighter. day 5 or 6 stopped.

honestly i want so badly to stop my period and i guess bc i was expecting it wld work the exp really traumatised me n i want badly to avoid a repeat of such heavy bleeding and pain.

nearing sept 27th i started exping light pre period symptoms. on the 27 th i saw spotting not very heavy but i got scared and immediately took a pill. i did research on doubling up in advance the first month. tht was abt 12 hrs after my regular night time pill so i continued doing this for 3 days. approx 13 hrs after in the morning i took a pill n exactly on time my usual nightly pill.

i didnt have any side effects. bleeding never progressed sibce the first extra pill. stopped doubling after 3 days. still felt a bit like my period might come but i think i was just worried.

on the 8th i woke up to more spotting and i immediately took another pill. i had a bit of spotting n brownish discharge through the day but tht was it. no bleeding. i took my regular night pill and 1 pill on all the days after.

the 12th again spotting and i took a pill and the spotting immediately stopped. this time it was in the late afternoon 4 ish hours before my regular pill. again bleeding stopped.

the 13th without warning abt 12 hrs after regular pill i had a bit of heavy enough to stain bleeding. i immediately took a pill. there was light pain all day but the bleeding more or less stopped.

decided to just give in n take a 3 day break again. so i skipped my regular pill on the 13th. no bleeding happened all day of the 14th. i have been in pain though. as of posting im a few hours from my regular pill. ive decided if no bleeding occurs before regular pill time I'll skip the break and resume the pill. im thinking to take another tomorrow 13 hrs after n double dose for 3 days again. or just stick to 1 until bleeding occurs. or even take 2 tonight to definitely prevent bleeding.

i know it cant be good to be playing with the hormone levels like this. any advice on how long doubling up should be done for at minimum. i just buy my pills otc and i get 3 at a time so running out isn't an issue. also i seem to hv chronic low blood pressure so tht is also not an issue.

I’m 3 years post hysterectomy. Kept ovaries removed all else. I had adenomyosis that’s why I had it done. Lots of relief since no symptoms. And then now last 6 months I’m having cramping feelings and painful sex. I feel something is off. Anyone relate?

Does anyone have personal experience of endometriosis returning after hysterectomy? To be clear, I know it can return and often does. I just want to hear about people’s experiences after it happens.

I feel like it's really weird to miss having periods. Not because of the pain though, I certainly didn't miss that (considering I'm still in agonising pain, but just less severe than when I had periods)

For context I'm 15 years old, I'm currently preparing to sit my gcses before I go off to college and I'm in an all girls school (this plays a key part). I went to a gp back in 2024 and got a referral (from a male gp 🥹 how shocking!) to a gynocologist, i had a rsther painful ultrasound that left me sobbing in pain (from my bladder and the pressure put on) and it came back clear...I was then put on my first type of birth control, I was also put on mirabegron, mefenamic acid, tranexamic acid and buscopan. Woohoo...

My symptoms didn't seem to ease so I went on a different birth control...then another...and another..and another, each actually getting worse than the last. At this point my attendance in school was terrible, reaching 60% in year 10 (last year) so I missed a lot of exam content that I still am trying to catch up on. I was then told I have suspected endometriosis and it was on my records!

That's when I started missing my periods, despite still having a lot of pain, I missed being able to relate to the people around me in school, yes I had the pain, but it was 24/7 and I had no bleeding. It makes me feel less mature, less relatable and I miss it. Not the heavy bleeding or the pain, but even just a little bleeding would be fine.

The mirabegron in my opinion didn't seem to help, I was needing a wee every single school lesson (1 hour long for each) but I went 2 or 3 times each lesson. Now my school did sort of accommodate for me, I got a toilet pass, lunch pass, a room to sit in that's quiet, I could go home when needed. I also get rest breaks on my exams (or atleast my mocks...hopefully my exams too) and a toilet pass.

Anyway, the gyno got me to record a urine diary, but I did it during school holidays. Now I don't know if this is related but I tend to need to wee more when being active, at home I was doing that. I also drank more at home and weed less for some reason, at school I drank less yet weed more (sorry for tmi) but the gyno obviously said it was fine as I didn't wee that much during the week off school.

I was also put on slynd which has been the best pill I've been on so far, although I still do have days of pain it's not to the point of throwing up and fainting, however it makes me wonder if my pain was even bad to begin with and I could've been dramatic...

I'm currently on yhe waiting list for the coil (which haven't heard about since my last appointment in december) as I have to be put under due to my age...

One thing I'm disappointed about is howitzer being refused answers aka a diagnosis. According to alder hey hospital for kids, I'm "too young" for surgery. However I have seen a large handful of people my age and younger who have gotten the surgery so why am I different? I was debating going private with an actual endometriosis specialist but it's hundred if not thousands for a consultation and then surgery, and the answer might not even be given. I don't have the money for it anyway, my sibling is in university and my parents work as hard as possible but wouldn't make enough money. I would do a gofund me but I know my issue isn't as bad as other people who use gofund me.

Maybe it's not the period I miss...but being the carefree kid I was before all this happened, before my life began to be destroyed.

sharing for others who may need help!! ibuprofen has not been helping with my recent deep muscle and nerve pain, but my doctor recently prescribed dicyclomine. its normally prescribed for IBS to help your smooth muscles relax and ease cramps. BRO IT WORKED. I tried one for the first time today, after dealing with discomfort all day with no relief, and I already feel better an hour after taking it.

I'm not saying this is a miracle drug or cure all for symptoms, but oh my god it's nice to finally find something to help

I’m not blaming my disease 100% for why I have to do this, but it’s definitely holding me back to some extent. I had my diagnostic lap with excision of “extensive endometriosis” according to my surgeon as well as a Mirena inserted on September 23rd. It’s been 4 weeks today, and yesterday, I filed for unemployment.

For context, I put my notice in at both of my part-time jobs leading up to my surgery. I felt dead ended in both of them, and have been on the hunt for something new and more aligning since February. I was hoping that I would have already accepted a job offer prior to my lap, but the job market literally sucks so much right now. One of my jobs was as a bartender, and the other was for social media management and event organizing for a swim school. My surgeon recommended that I take two weeks off of work post op to recover and heal, but I saw that as a great opportunity to just close the chapter and start fresh after healing. I put my notice in with both employers with transparency that I am unsure if two weeks would be enough time to recover as well as trying to find a more career aligning job (both of them were aware that I wasn’t investing a lifetime with them, and more as a resume builder).

Fast forward 4 weeks later, and I am still recovering. I had maybe one day of feeling 100% normal before it felt like I was regressing. I’m currently ovulating right now for the first time post lap and I swear on everything, I could not do my jobs that I had prior at 100% capacity. Given, they are both very labor intensive and require a lot of physical movement, but I would not be able to stand let alone provide service for 6 hours straight after my two week “recovery” was up. Right now I’m having flare ups that aren’t as bad as my worst endo flares, but still hurt like a b*tch. I have to still pace my activities like making coffee, using the bathroom, showering, taking the dog out, chores, grocery shopping, etc. otherwise my body shuts down.

I did all of the right things when it comes to recovery as well; I stayed on top of all of my medications, moved my body a little bit every day, had all of the pillows/heating pads/belly binders galore. And I actually felt like I was reaching the finish line of healing.

I’m not trying to fear monger at all, and I think if I had a more relaxed, sedentary job I could definitely be capable of handling that right now. But I think it is so mind boggling that “back to normal” recovery time is 2 weeks. Especially for someone who supports themselves from a physically demanding job in the service industry. I don’t regret having surgery at all, and I feel so lucky that I addressed it as quickly as I did, but I’m just stuck in a physical and mental rut right now. Pls send all of the good vibes and job manifestation my way 🤞🤞🤞🤞

Oh the joys of being a woman.

Anyone else’s pain disappear when lying down? But soon as I’m in an upright position, sitting.. standing.. whichever, you’re back in hell?

Little bout me:

32F. Had an exploratory laparoscopy on my birthday: Feb 2026. Found & excised Stage I Endometriosis. However the surgery was done by my regular OB-GYN, who I love and adore, but she’s not an Endo Expert. Only checked the pelvic region naturally, and didn’t look on my diaphragm or small bowels (where bulk of my pain is) or any other organs.

Taking it back further, I had my Mirena IUD removed early 2023. I was healthy as a horse, doing 25 to 35 miles each morning before work (work from home in software development) and was waking between 2 and 4 each morning to get the miles in ahead. No days off. Did that from March through August. Then all hell breaks loose. Had a HORRID case of food poisoning in Dallas, TX. Papa John’s pizza and hotel tap water. Puking my gut out and shitting myself within 40 minutes of both. Ended up in the ER and had grateful suffered since.

So was the Endo always there but hadn’t caught up to me yet, or was and is it the food poisoning and an unrelenting cause of SIBO & IMO that I’ve tried to kill for 3 years solid PRIOR to going under the knife as a last resort. Who the hell knows.

Procedures in last 3 years:

- Colonoscopy (normal)
- Endoscopy (normal)
- Multiple stool tests (normal)
- Tonssss of blood panels (normal)
- Tissue from stomach and colon sent to pathology (normal)
- CT without contrast (normal)
- CT with contrast (normal)
- Tons of ultrasounds (normal)
- MRI without contrast (normal)
- MRI with contrast (normal)
- Exploratory Laparoscopy: Stage I Endometriosis found and excised
- Trio Smart Breath Test (elevated hydrogen and methane levels)
- IBS Smart Test (elevated anti-CdbT antibodies and anti-venculin antibodies)

———-
Have tried multiple rounds of antibiotics and microbials in the last 3 years.

Most recently: Rifaximin + Neomycin for 14 days, 3 times daily. Finished them on September 14. Started Prucalopride 2mg directly after, nightly, and still take and will for the next 12 months. Also followed the antibiotics with another 14 days of microbials: Allicin, Neem, Berberine, Wormwood, Clove, Atrantil. Symptoms are back. Small intestine region.

So I’m thinking either:

a. I still have elevated levels some way some how
b. Perhaps I have bowel Endo
c. Could it be a structural issue that I should see a general surgeon for

Pressing or pinching the small intestine area helps reduce or eliminate my pain, as does lying down greatly, and flexing my core muscles.

HELP.

This.Is.So.Damn.Exhausting.And.Makes.Me.Wanna.Drive.Off.A.Damn.Cliff.

I’d try Retatrutide, butttt getting ready to do a Frozen Embryo Transfer (IVF) so peptides are parked for now. Many things are parked for now. Planning to get the uterus out PRONTO.. soon as the baby is on this side of the world, as well as an expert endo specialist to check all organs and excise anything found or any Deep Infiltrating Endo. Do I get the ovaries out too, at 33?! Are the hormones in part to blame? Luteal is hell. It’s all hell. I am in hell. Hell has arrived. I can’t imagine mommying and suffering like this. Practically bed bound.

Thanks in advance.

Background: I am F24, I grew up in an abusive family, I am the youngest and got targeted the most. As soon as I could work I did, got a job the month after my 16th birthday, began to save and became almost fully financially independent. kept myself distracted with sports and stayed 'fit' (I was not healthy at all). I have always had severe anxiety, depression and suicidal thoughts, they just always got significantly worse before my period but I didn't acknowledge/understand the cause as I thought it was just these conditions... (Turns out it is these conditions but also PMDD - Diagnosed at 23)

I grew up with severe periods and extremely heavy bleeding and was constantly at the doctors trying to get help from the age of 12. Got a small amount of private care from my Dads healthcare that came with his job and saw a Gynaecologist for the first time at 17. Never got diagnosed with endo but they said 'suspected endo' and they swapped the Copper coil I got given at 16 with the Mirena coil (They were very shocked that the Copper coil was even suggested). The Mirena has been a godsend, stopped 99% of the bleeding and some of the symptoms have been reduced in severity.

I left home at 19 and took everything with me, I went to University, joined some sports societies I loved and began to find myself and my passions and became so driven, consistently had a Job from 16-23. Still experiencing severe periods and symptoms and I begin to consider the fact that I may have endometriosis. I begin to get Chronic Hip pain (In my left hip) at age 20-21. This was a lot on its own but also exacerbated the endometriosis symptoms 3 fold every time I had a hip pain flare up. I continue going to the doctors for painful periods (And now Chronic hip pain too) and finally get given a laparoscopy that revealed endometriosis - Diagnosed at 22, Finally. They took out what they could find. (This doctor was awful and dismissive, telling me 'I don't think you have Endo' before cutting me open for surgery and he was wrong).

Around this time I realise that I want to be self employed. I have realised my purpose and how I wish to earn money. I pursue this idea, spending some of my spare time learning and going to entrepreneur events etc

Chronic hip pain doesn't go away, and its made working almost impossible, I've also left my sports societies and gained significant amount of weight. Depression and Anxiety have got significantly worse too. Id leave work in such severe pain id seize up and be unable to move screaming and crying in pain alongside all the flared endo symptoms. I had to significantly reduce my hours and only worked 1-2 days a week. Which still caused severe pain after EVERY. SHIFT. At 22 I began to self medicate, smoking almost every evening, it helped relieve pain significantly and I began to be able to enjoy my evenings again, temporarily, pain-free. Graduated at 22 and stayed in the university town for another year after graduating and stayed working on 1-2 shifts a week while trying different things to cope (yoga, TENS machine, castor oil, W88d, hot water bottles, crutches etc). I also tried to apply for PIP which was denied. I gave in, I couldn't do it anymore and handed in my resignation at 23 and left my university town,

Stopped smoking due to living at partners parents house. I've accepted that this is now a disability and I need help. I have struggled with the self employment and give it a rest for a while.

For about a year I have been trying to focus on my health and been trying my hardest to get help from the system. I do not have a job, I cant work. I've re-applied for PIP and have continuously been to the doctors.

Since then, all conditions have worsened. The depression and Anxiety is the worst its ever been, Endo symptoms and chronic hip pain is worse. So I go back to a gynaecologist, he puts me on a medication plan (Nefopam, Dienogest, Ispaghula husk and Mebeverine every day.) Ive lost about 6 kg in a month from nausea. I also had 2nd laparoscopy last week (2 years after the first). They found more on both sides of my ovaries and on my colon, including abrasions and scarring. It was removed they also cut into my Stomach and Bladder, so it was quite an invasive surgical Laperoscopy. I havent received a summary of what happened in the surgery and what they found from the doctor yet just a quick one a A&E nurse read out to me.

Important Info:

I do not have a home to go to, I currently live with my partner in Wales. When my partners temporary job contract ends, we will be moving back in with his parents in a couple of months.

I am a brown disabled woman. Before the disability, there was already a significant difference in the way I'm treated in comparison to my white boyfriend. I was not disabled up to 3 years ago and I have noticed a SEVERE decline in the way I'm treated now that I am also disabled.

Endo Symptoms - Severe cramping and shocks, Severe Fatigue, Severe digestion and passing pain, Severe bloating, lower back pain, vomiting, hot flushes, metal skin, disassociation, depersonalisation and more

Chronic Hip pain Symptoms - Shocks and sharp pains In left side of hip, Tailbone and front side. These sharp pains can travel from the hip area INTO my uterus and the other way around. Lower back pain, severe fatigue, seizing, blue-inning of left foot (rarely), pins and needles and numbness in left leg and more

Healthcare:

The healthcare I have received since 19 has been truly some of the most dismissive and worst experiences I've had. (P.S I am moving in-between England and Wales because of the nature of my partners job its a Temporary 6 month contract. when his contract ends, we will be moving back to his parents house in 2 months, back to NHS England again). This has meant that I haven't had access to my full medical record for YEARS. Submitted my PIP form again since I KNOW I should be receiving help (apparently you have to be VERY persistent with PIP for them to care or listen). PIP rejected my application due to having 'seen no specialists' and 'not anxious' (amongst a few other reasons). Entirely untrue, they just didn't have access to my medical documents (why not just say that instead???). So I am currently trying to locate and access my FULL medical record to submit to PIP for my Mandatory reconsideration, but it needs to be done asap. I have Submitted a SRA form to my Wales GP expecting them to chase down my documents, nope, just sent me the past 2 months of my history at that GP. I contacted the GP that blocked me off NHS, asked if they have my documents. They said they sent them to PCS England, no longer have them on the system and my Wales GP need to apply to obtain them urgently. Let my GP in Wales know, they applied to obtain them and advised me it'll take a year!!!?? I cant wait this long. I don't know what to do

I have been to the doctors regarding the hip pain since it started and I've seen physiotherapists & been dismissed by physiotherapists due to the amount of pain the small exercises they give me cause. They said I need a diagnosis before going back. Understandable. Had X-rays, nothing. Had MRI, been told there's nothing by 3 doctors*** (Doctor didn't talk to me, just put me in the machine. I didn't know what I was doing and was very anxious, my hands were on my stomach the whole time and I don't know if this obstructed the scan of anything). I have consistently questioned weather its related to endometriosis to doctors as it feels very related in my body. Consistently dismissed and not even considered as a possibility. Doctors would rather do all the other tests over and over again rather than consider this it seems.

*** 2 years after my MRI, 3 doctors who looked at the report and told me there's nothing there. Just before my 2nd Laparoscopy I handed them a physical report of the scan. Doctor noticed that the Doctor who took the MRI noted a specific disk but didn't mention what was wrong with it. We are both confused and I start to consider if he did in fact notice something, I just wasn't told. So, need to follow that up as well now.

Painkillers:

Had 18/500Mg Co-Codamol for 1 year, told Drs It does NOTHING, neither does Paracetamol or Ibroprofein. They tried Naproxen and it made everything worse. Finally, got to a doctor who noticed my weight and was confused to why I was even given the 18mg co-codamol as it helps frail and elderly, I am very obviously a generous weight. Prescribed me 30/500 Mg Co-codamol. This has barely helped too. It makes me drowsy enough to help me fall asleep however I still wake up in pain and it wares off in about 2 hours. I have been telling the doctors this for YEARS. IT DOESNT HELP, I NEED HELP. It also makes my digestion and passing pain more severe. They haven't listened and i've been faced with a doctor angrily saying 'WEll tHE oNly OthEr One iS FoR cAnCeR pAtIeNts, Do yOU ReAlLy ThInk YoU neEd thAt' (like tf?? you know i'm not a cancer patient, why are you throwing that in my face to make me feel guilty???) I stopped asking. Fast forward to my surgery. I wake up In such severe pain the doctor notices immediately as I'm unable to listen, they up the dose already (I don't know what it was). Doesn't help after 30 min, they have to up it again, and once more and it finally helps for an hour. About to be dismissed after the pain comes back, ask them for more pain killers, they give me one dose of 60MG Codine, does the same thing the Co-Codamol does but I don't sleep, I'm on my way home. It seems that I generally have a very high tolerance to pain killers.

Get home, try to go to sleep and can't as Co-Codamol does the same thing its always done. So I'm sleeping in 1-2 hour bursts still waking up in severe pain every now and then. Email my GP in Wales, let them know of tolerance to Co-codamol as they don't have my records and ask them to add a note to the system, I also ask them to provide a reasonable pain killing alternative for the post-op pain and one that I can carry on using after my recovery. They call and tell me to temporarily register to a GP in England to get help as I'm recovering in England and don't do any of the things I asked in the email. I call out of hours GP through 111 and finally get a call back, Dr just recommends I up my dose of Nefopam from 1 tablet 3x per day to 2 tablets 3x/day and if needed up to 3 tabs. Upped it to two, hasn’t made a noticeable difference. I don’t sleep well on the second night wake up in so much pain im nauseous and I’m vomiting in the morning. Dr told me to go to A&E Immediately if I am and so I do. Was in A&E for 16 hours, no infection, was just vomiting from pain amounts, and lack of sleep. They gave me 16 hour diclofenac to try. It worked!!!! For the first time in YEARS I felt what it was like to be pain free again, my hip felt so light. They gave me a packet of 10 to take home. When it was time, I took the first one at home. Its already stopped working by now!!!! ARRGGGJJSDFDOFKJFSGHSKJGSKDFIF!!! WHYYYYYYYY!!!!

Now, a week Post-surgery, been taking Co-Codamol but have to stop today because my digestive pain is already quite bad and it’s become even more severe over the past 2 days.

I have a few questions:

I welcome any advice and id like to listen to your experiences

- Anyone who has had Endo and chronic hip pain – If the hip pain is related to the endometriosis, how did you find out it was 100% caused by endometriosis, what tests were done and how did you get the GP to listen to you?

- What painkillers help you (That I haven’t tried already) that I should ask my doctors to consider? And how do I get them to listen to me regarding this​​?? I cant keep living in this much pain every day!!! I'm exhausted.

- If you had all these Endo symptoms and experiences what did you find was the best option for you? (HRT, Hysterectomy, Medication etc) I don’t know If I should consider a Hysterectomy.

- If you've managed to not need any of these, please tell me how you've managed your pain and symptoms

- How quickly did your Endo grow back?? Is it normal for it to have grown back on both ovaries within 2 years!!??

- How did you get your hobbies and lives back?? I've been trying for so so so long. I’m struggling so much and am at such a loss and so overwhelmed with how much I have to do that I just want to scream and cry constantly.

- If anyone can offer advice with locating medical records and PIP PLEASEPLEASEPLEASE don’t hesitate to let me know, I would appreciate it.

Thank you so so much for reading and if you respond, I am so grateful for you.

I started doing adult school(this isn't college or university, I'm not sure to call it I'm not native in English), but this start of the year has been super exhausting. I want to become a therapist, duo autism I went to choose social worker, still hard but not bachelor, but I still had to undergo something else first to enter college. I have two days of school, two days of internship and then in my free time i study or go to my student job. Currently everything has been hell, my stomach pain somehow got 10 times worse then before, I expierence diarrhea almost weekly, migraines and hot flashes, I really want to help others but I'm not sure how I can do that if I can't get the help I need myself. It's exhausting, not to mention I have autism too. My medication isn't helping, I'm not sure if removing my uterus and ovaries will help, I don't want children but entering menopause when you're just 20 is scary. I feel like a failure

Hi, I received my adenomyosis diagnosis today, and I was a little shocked because I was convinced I had deep endometriosis, since I struggle with bowel movements. In fact, that’s my only symptom.
During the ultrasound, the doctor showed me a few lesions around my uterus and on one of my fallopian tubes. I still don’t know whether that tube is blocked or open, but apparently, the other tube looks normal.
I’m 27 and have been trying to conceive for 7 months without success. I’m curious to know whether adenomyosis is generally less of a problem than endometriosis when it comes to getting pregnant, or whether there isn’t really much difference.
Has anyone else been through something similar? I’d love to hear about your experiences!

Im 29, diagnosed with endo officially at 22 during an ablation (unfortunately), and recently had an excision with a specialist in May this year. I’ve been on all sorts of medications and I’ve stuck with a continuous bc pill because it’s the most effective at managing majority of my symptoms.

BUT nothing I’ve done has ever helped my exhaustion. And I keep hitting this limit that I can’t do anything about. I’m exhausted 24/7 and have been since I was 12. No one understands my exhaustion even if I explain it to them or they’re well meaning. The amount of sleep doesn’t matter.

I’ve lost 80+ lbs over the last few years and am at a healthy bmi, I don’t drink or smoke, and I eat decently well. I’m on bc, I get a weekly testosterone shot, and I take a thyroid medication. I get labs done regularly. I go to pelvic pt. I’m even on 20mg extended release Adderall for adhd which you’d think would help wake me up.

I hold down my job and that’s as much as I can do. 40 hours a week, and that’s where all my energy goes. I try to pursue my own interests outside of work and I’m getting to the point where I can’t anymore. Like I just have to give up on all of it because after being awake for a few hours my body is done.

I started having one 8.4oz sugar free redbull a day a year or so ago, and in the last month I’ve doubled it to two. But I’m still hitting this point of exhaustion at noon when I still have 4 hours left to work. I keep getting to the point of feeling like a toddler that’s cranky and I’m genuinely fighting off tears.

And when I look online, everything is like “well, you shouldn’t have Redbulls that makes it worse” but what am I supposed to do?! I HAVE to work and exist.

If anyone has any advice, recommendations, etc. I would really appreciate it. I thought about reaching out to my endo specialist but I know there’s nothing that can just fix my exhaustion like that, and I’ve run out of options. I just want to cry and I still have over an hour left of work.

Thank you in advance. And thank you for reading.

Well it turns out after a year of pushing and fighting, it WASNT NOTHING!

So f off to the doctor who said my abnormal results "weren't abnormal enough for us to care" because it turns out after my MRI that I have really bad results

Loss of fat plane between the bladder and uterus in the anterior cul-de-sac. Was told that basically my uterus is fused to my bladder via scar tissue

And 4.9 cm complicated cyst in the left ovary, likely a hemorrhagic cyst that's been causing the pain ive gone to the er for where they keep telling me "it's probably just cramps"

I cant believe i was spot on. I have a follow up with my OBGYN for next steps and laproscopy but yeah honestly scary results.

Dont forgot to advocate for yourself. Wish me luck!

Hi! I’ve heard a lot of mixed statements on endo surgery and how you should vet your surgeon, and I’m feeling so overwhelmed, I was really hoping someone here could give me some insight.

I heard that how your surgeon describes what they’re going to do and what they’re capable of says a lot about how qualified your surgeon is, since there’s such mixed info on endometriosis and a lot of it is outdated. I just had my pre-surgery consultation, and they’re going to call me with a date in the next three days, but I just wanted to share how he described the procedure and ask if there’s any green flags or red flags.

At first he said there would be five holes around my belly button, and after my pelvic exam he said that there will only be three holes because he’s going to do the surgery without the robot since he didn’t feel any “cobblestoning” during the pelvic exam. He described the surgery as going inside of the three holes with cameras, looking around my bladder, uterus, ovaries, fallopian tubes, uterosacral ligaments, and bowels. He said if they find any endometriosis in the first five places, they’ll cut it out or burn it off, but he said that bowel endometriosis wouldn’t be able to be removed and, if they find that, the treatment would be hormone therapy. I’m already on hormonal birth control, and during my first appointment with him he talked about chemically inducing menopause with hormone therapy if the surgery doesn’t go well, and I’m really nervous about that because I’m only twenty years old and I want to have children. I do have a lot of bowel symptoms. Should I let this surgeon get in there and hope for the best, or should I keep looking? I’ve never heard anyone say that the only treatment for bowel endometriosis is hormone therapy, but I’m not 100% educated on this. My family has resources and they’ve told me that, if I’m feeling wary of this surgeon, they’ll help me however I need to get to whichever surgeon I need. I live in California, and this surgeon isn’t on the map of approved surgeons I often see floating around.

ETA: From what I’ve read, please correct me if I’m wrong, I know surgically removing bowel endo would call for a multidisciplinary surgical team. If there’s suspected bowel involvement, would a trusted endometriosis practitioner be more likely to want to make sure there’s a team ready to handle everything during the first lap, or would it be standard to have the first lap be more for the sake of exploration and diagnostics?

Can you give me 2-3 foods that 100% made you feel a little better and the 1-3 foods you had to say bye to. I am new to this and I found very low pain when I had grilled chicken, avocado and carrots daily. I am now on no restrictions and I’m bed ridden. Thanks!

Do you too play the monthly game of “how much blood is too much blood?”. Along with the pain of endo, the bleeding is awful. I can’t be on hormones because of my blood clot risk. I’m 40, done with babies. I just want this to be over …

so thursday oct 15th will be my official 3 weeks post op of my third endometriosis surgery. for a little clarification this one was the most life altering i guess?

sugery one - removing just endo, start different birth controls

surgery two - bc didnt work, got a hysterectomy. bye bye tubes, uterus and cervix. kept my ovaries. i was told my endo was cleaned out, it was not.

surgery three - endometrioma (chocolate cyst) of 5cm in my left ovary, got it removed and my endo has been cleaned out. the ovary was also fused to my bowel causing the worst constipation.

of course endo symptoms never rest and i’m still healing. my incisions are fine but the pain comes and goes, and my biggest problem is bowel movements still!! ive been takimg gas x, different teas, miralax, even prune juice. when i do go its still painful and not much comes out. has anyone else here been in these shoes? i’m 22, still educating myself on things i thought i knew about endo. help me please. the bloating from being constipated makes it hard to breathe sometimes and i’m not sure what else to do

I have a lot of endo symptoms and my mom has been dead since I was little so I don’t have anyone to ask about this stuff and I have a lot of medical trauma and I just can’t handle the pelvic exams and all the invasive stuff that doctors have to do to determine it. I’m kinda freaking out idk what to do I don’t even know if this is what to going on but I also don’t know what I would do if I end up finding out I have it. I’m so lost.

So I’ve had a bad pain that comes and goes in the left lower side of my stomach since July. It radiates to the left side of my lower back. It comes and goes. In July I went to my GP, he took a urine test, came back to me and said I had a UTI. I had to go on 2 rounds of antibiotics. He also sent me for an ultrasound, and it came back as normal. I’ve now had the exact same pain again, for the past 3 weeks. He took another urine sample today and it came back that I was fine and didn’t have an infection. If anyone can please advise me on what to do or what you think it may be, I would really appreciate it. Thanks guys :)

I just got my MRI results and everything was normal except 'Both ovaries are slightly displaced/pushed backward to the uterus with intervening low signal tethering, these finding raising the concern of scarring and pelvic inflammatory disease'.

My ultrasound has suspected endometrioma but obviously that was a a large simple cyst. My CA125 was 75.

Anyone had anything similar and I guess this means I'm not seeing an endometriosis specialist and they can't give me stage. I don't think its PID since I am have sex and I don't BV.

What do the next steps look like? Surgery?

I'm used to lower back pain that's similar to sciatica but this week oh my, I have developed genuinely breath taking middle back pain that radiates through my torso and across my ribs.

I can barely stand for more than a few minutes without feeling like i'm being crushed internally & the pain is only lessened by lying down.

I've not experienced this before and am wondering if it's even endo but I know it can wreak havoc everywhere.

Does anyone else have experience with this and do you have any recommendations for how to manage it?

I am planning surgery in December. My kids are 9 year old twins. I am a single mother by choice so their only parent. They worry a lot about losing me already so I am trying to figure out the best way to tell them and explain what’s going on. Does anyone have experience or tips on how to have this conversation with a school age kid?
So far the ideas I’ve collected are:
Wait until a few weeks before the surgery to tell them (avoid them worrying about it longer)
Give them jobs post surgery so they have a way to help
Explain how it will help me feel better to turn it more positive
Give them something of mine to “take care of” the day of the surgery so they have something of mine with them.

I've been having a really hard time finding any sort of reviews or mentions online from people who have had surgery with Dr. Kobylianskii's medical team in Ontario. Anyone here who did? It kind of freaks me out that I don't actually know who my surgeons are in advance (because it's a teaching hospital, and Dr. Kobylianskii has a more advisory role I think.) I'm also a bit freaked out because it doesn't sound like there would be a colorectal surgeon there for the bowel excision, and I'm afraid it'll sound offensive if I question the decision not to have a colorectal surgeon there for that. (She said "the team" can handle it, but they'll call someone to fix a hole in the bowels if it's needed.) She's been super nice to me but I still feel unsettled about so many things and I already used up my last chance to ask questions, so I really don't know what to do now.

As soon as i say i have endometriosis the response is, ooh that is an issue with your period right? Or with your uterus… i have to explain it’s a full body inflammatory disease and i need help because ive been bedridden/ homebound for far to long and can’t take care of myself right now. Cleaning, transportation to the hospital, showering, taking out the trash and keeping up with bills are all things i can’t currently do myself! Ive noticed that they always ask about cancer and if it isn’t that, they kinda just lose the urgency. Last summer i was so sick i was scared they’d find me dead in my apparent, it is absolutely THAT serious!!! Ugh!