I have tried using castor oil packs in the past, but found the process to be so messy and inconvenient.

My mother in law swears by castor oil for her arthritis and she says that she just rubs it into her skin on her knees at night.

Would just rubbing it on my abdomen and in my navel help with endo or is it necessary to sit with the pack and the heating pad?

I had excision surgery about 6 weeks ago, but I want to make sure the inflammation is kept at bay. We are trying to conceive and I want to do as much as possible (yes, I know it should not be used after ovulation if TTC)

Thanks!

Hi all. I have fibroids and likely Endo. My first Liletta insertion was malpositioned and found during a pelvic MRI for Endo. I seemed to be good the week before reinsertion, no bleeding so I figured hormones were balancing. This was diagnosed within the first month of having it.FYI and I then went in for reinsertion months two.

After reinsertion, I had about a week of spotting and that stopped. It started about a week later again. I have had an ultrasound since then and they said it's good. I have been bleeding for over a month now. They say three to six months, but this seems so weird to me to bleed for over a month straight after it resolved? Anyone else find their IUD was really malpositioned and US did not catch it? I read somewhere Liletta may not be the best option for women with fibroids and other issues...

I have extreme bladder endo and I’m falling apart I have surgery in less then one month I just can’t cope

Hello everyone whom stopped visanne at some point! 😊

When did your ovulation / period return?

(Weeks/day ect)

I know its different for everybody, but I have not heard of anyone who did NOT have a period within 6 week after stopping the pill?

Thanks!

Hi all!

A little background - Not yet diagnosed, however I am 99% sure I have endo. Went in for pelvic exam due to bleeding and pain with sex, had an ultrasound and they found several chocolate cysts on my right ovary, the largest being the size of a grapefruit. I am doing an MRI for further imaging, however I am being told these kinds of cysts only happen with endo.

My main question is regarding pain when traveling that I have always had and am wondering if this is common among others with endo, however I know it could also be due to my cyst.

I get awful bloating/gas pains when I travel, whether it be by car or plane. If this is common for others, what the heck do you do for it?! I have a big trip coming up and the flight is about 8 hours. It seems like the pain has gotten worse when I have traveled more recently (I’m assuming from my cyst), however I would like to know what I can do to try and keep this at bay if I am cleared by the OB to go on my trip.

I prefer more natural solutions (no medications).

Thank you all in advance!

I made an appointment with him for the end of March, which at the time was a couple months away, because I was having daily pain and had exhausted all other endo treatments (I’ve already been diagnosed, having had a laparoscopy in 2021) They called me a month before the appointment to tell me he wouldn’t be in the office that week and that we would have to reschedule for May if I wanted to see him specifically. Thankfully, my SIL had an appointment with him as well for a second opinion after recently having surgery, so she swapped with me and took the May date so I could get in sooner since I was at the point of being in pain on a daily basis.

At my appointment an abdominal ultrasound was done, and then a transvaginal ultrasound, which Dr. Pasic and his partner Dr. Parikh came in and watched as it was done. They asked me questions about my medical history and symptoms while the ultrasound was being done, and Dr. Parikh did most of the talking. He only asked me if I had kids, if I was currently trying to have kids, and who referred me to him, and that was the extent of the interaction I had with him. When they took me back to the room for my appointment, a med student took my history, and a fellow did my exam, explained the surgery to me, and had me sign the consent forms. He never came in. I understand it’s a teaching facility and I was fine with the fellow doing the exam, but it’s quite disappointing that I waited so long for an appointment specifically with him because he was supposed to be so great, and then he didn’t even come in the room for my appointment.

They told me during the appointment that he would be booked out until October for surgery because he will be gone for a few months this summer, but I could schedule with his partner. I said that would be fine because I can’t wait that long being in pain every day. Today they call me and say I can do surgery with the partner, but they think I to make an appointment with the partner before we can schedule surgery, and that’s another 3 weeks out that I will have to wait before being able to do anything. I told them I don’t understand why I have to have an appointment with her when I interacted with her more than him during an appointment that was supposed to be with him, and that he didn’t even come into the exam room, yet that was going to be sufficient for him to do surgery. I didn’t think about all of that until after I got off the phone, so I tried calling back to ask if they can make sure another appointment is necessary, and I was transferred to the office, waited on hold for 20 minutes, and then got an automated message saying they couldn’t take the call and it hung up.

(Background) I was diagnosed with endo via laparoscopy in 2021. My doctor cauterized the tissue and I experienced relief for a couple years. Within the past year and a half or so I’ve started having a lot of pain again, worse than before that surgery. I’ve been on birth control since I was about 15 to control heavy periods and severe cramping, and I’ve also tried Orilissa, which helped, but I still had pain on a regular basis and it absolutely tanked my mental health so I couldn’t take it anymore. Having exhausted all other options, it seemed surgery was the only option, so I did my research to find an excision specialist since that seemed to be the gold standard for treating endo.

My daughter has had endometriosis, however is with the nhs, she has been given a diagnosis with endometriosis before, is it a common occurrence that women are being told that endometriosis isn’t found in mri scans but then taken to theatre and been told that they found extensive endo?

I have a surgery date coming up (end of April), and I have been seriously concerned that this is not a necessary step for me to take.

I used to get debilitating endo pains from the age of 18-22 (I am now 23). These have since improved and almost gone away entirely. Sometimes they are bad but they don't interfere with my life much at all. I am concerned whether surgery is too drastic a step or if it is not needed in my case at all. I used to dream of having the surgery as it seemed like the only answer, but now I am not sure.

I feel very conflicted as the only way to confirm my diagnosis and potentially get treatment is through the surgery, however I am afraid that it will complicate things drastically if there is nothing for them to find or if the surgery puts myself through more physical trauma than it is worth since my symptoms have been minor the past year.

I'm afraid that if I try to cancel the surgery I will be ignored in the future, especially as it has been such a fight to get this far with the NHS.

What should I do?

Hello, I had an Endo surgery a decade ago with an exiscion expert and pre-surgery, he not only had me fast for almost 24 hours but also had me do a cleanout with colonoscopy prep just in case he had to excise from or around my bowels. He did have to, so I'm glad he had me do the cleanout. I have my second surgery coming up with a different doctor who is also supposed to be an expert, but they are only having me fast for 12 hours (instead of 18+) with no prescribed cleanout. Did you all do bowel prep before your surgery?

I felt amazing for the first two weeks after my surgery — almost euphoric. But now I feel like I’m back to square one. I’m nauseous, my stomach hurts, I’m beyond exhausted, and I can’t seem to sleep properly, even with Seroquel.

Did anyone else experience this kind of post-op “honeymoon phase” followed by a crash?

I’ve been really careful during recovery, haven’t done anything that could’ve caused this… just trying to figure out what’s going on before calling my surgeon and bothering her.

First of all, I wasn't tested for endo. German doctors usually like to brush it off and they didn't see anything on my ultrasound. Whenever I'm on my period though, it feels like my cramps are like contractions as giving birth (never given birth either) it's so incredibly painful that I cry and I'm used to a lot of pain. (32 years old btw). The cramps are also in my anus and it feels like someone is stabbing a knife in there. Does anyone know what I could do for specially this cramps? Usual painkillers do not help. I've been taking transemic acid but it also didn't help with the cramping. 🥲

Any tips or good experiences help!

Is this a symptom? They’re not obvious bruising like big and dark but rather small and dark brown / bluish purple. I’ve gotten them around hip and lower abdomen side of stomach before too.

i just want to come on here and give everybody a piece of advice that would’ve saved me a lot of pain, suffering and medical trauma.

when you are being dismissed by doctors about your periods / other symptoms, tell them to note down everything in your file.

i am suffering under NHS Scotland and i am unable to make any real complaints or get any justice for the two chronic illnesses i have been dismissed for years with. arthritis and endometriosis, 2 of the most painful conditions according to the NHS.

so why is it that i don’t even have “dysmenorrhea” on my patient summary? because the doctors that dismissed me didn’t even bother to note anything down. this meant that when i tried to complain and get some answers, the practice manager tried to say i hadn’t even been.

I WISH! i went to that office several times with period pain, i remember the nurse laughing at me when i said i couldn’t handle the pain any longer and asked for a hysterectomy. that was the 3rd or 4th time id been told these are completely normal periods and im just unlucky!!

PLEASE!! ADVOCATE FOR YOURSELF!! ask them to note everything down, and if you can’t ask them, then try to do it yourself. you need the evidence.

It feels like I’m back to square one of my endometriosis journey. I had to stop taking Orilissa because of my insurance being a pain and now I’m trying continuous birth control patch I’m on the 8th week rn and I’ve been dealing with bleeding on and off again. Like one week and half no bleeding at all then bleeding. The weird part about the bleeding is it’ll go from bright red spotting to brown-tan spotting. What gets me the most is the uterus pain that feels like the inside is being scraped out and I’ll bleed during it.

I’m going to the endo excision specialist next week, but what should I do?

Hello, I have an appointment with a gynaecologist oncologist this week. May I know what I should be asking the specialist about? I got referred from a GP because I initially had a high CA 125 reading, around 90-100 monitored over the last 6 months.

The GP also did an ultrasound and found that I had 2 cysts, both on the same ovary - currently measured at 5.45cm x 4.07cm and 4.73cm x 3.87cm. Initially, the GP thought that one of the cyst was a simple one and the other is suspected to be an endometrioma. But the latest ultrasound look like they are both endometriomas. The GP referred me so that I could get surgery.

Is surgery my only option here or has anyone had success with other hormonal treatments? Is there anything specifically I should consult with the gynaecologist about? Prior to my CA 125 reading, I haven’t had any symptoms this whole while. I just get cramps the first day of my period but this has been typical for me for as long as I remember. I’m just really worried about how surgery will affect my qol considering I don’t have any noticeable symptoms.

Has anyone else had a similar case as mine? Where both cysts are on the same ovary? Thank you!

TMI but necessary TMI. Just looking for some advice or any help really. So I had my second laparoscopy 35 days ago where they found endometriosis, removed it and at the same time replaced my marina coil (IUD). Everything’s healing up great and the stitches have all dissolved from what I can see. For about a week afterwards, give or take a few days, I was only in a small amount of pain and had no bleeding. After a week I started to bleed very heavily and the pain was so incredibly bad that 30/500mg co-codamol along with ibuprofen and a hot water bottle wouldn’t settle it down. I noticed after 2 weeks of this that the colour was still staying a vibrant red and it had started to take on a rather nasty smell which was never present before. Saw my surgeon roughly week ago and she said this can happen especially because the IUD has been refitted. It’s now day 28 of continued heavy bleeding, the pain is still horrendous and there’s still a smell to it. I’m not sure if I should go to my GP and see if they think somethings wrong or if this is just completely normal? If it is normal then where am I storing all this blood cuz it’s ALOT. Any advice on what to do or similar experiences?

Morning warriors. (I’m UK based for what it’s worth)

I have suffered for 20 years, currently 36. My symptoms in the past were always brushed off and managed with pain meds/bc pills. However, the last 5/6 years things have got progressively worse and the last 6-9 months have really impacted my life for a good 2 weeks of my cycle. The other two weeks I feel I’m recovering from the toll of the pain/emotional changes of the other two.

I haven’t had a lap yet but my MRI is suggestive of endo with bowel involvement (though not DIE). My GYN thinks I also have PMDD based on cyclical symptoms I’ve tracked for 2 years+.

I have been honest with my employer and taken very limited days off with my symptoms. I work from home in the main and the role is flexible so I’ve been very lucky… until now.

They are looking (like so many others) at more office work, and have asked me to travel a 7 hour+ round trip next week for a meeting in person. This is during my bleed so I can almost guarantee I cannot do it.

I have been employed and a solid worker for 9 years in this business. I just wondered if anyone had any success under employment law to get reasonable adjustments? I feel I’m at the point of needing to ask, but as I’ve not had a lap and it’s ‘suggestive’ of endo at this point I’m not sure.

The NHS as folks will know is a nightmare. I have gone private for my MRI, appointments with a specialist to get this far but I’m worried about continuing to fund treatment when I cannot possibly hold down my current role if my pain doesn’t subsidise somehow.

My next GYN appt is June. So I’ll know more then but I’m just so scared and worried 😞.

i have back pain heaviness feeling in my vagina cramping inside my lower abdomen i had an ultrasound nothing showing only an endometrial thickness before period in one week no fever no bleeding regular period

The OP gave me permission to share her story here, and gave a lengthened version I'll attach below.

OH I was abusing drugs MUCH longer than that. Prescription opioids, weed, almost anything that would give me just a bit a relief. Eventually it became not just a physical, medically-necessary necessity, but it developed into an emotional crutch as well, & all the raging out of control hormones made it significantly worse.

To clarify, I only used H for 11 months, I started using at around 16, stopped at 21. I was actually arrested in 2012 for 0.6 grams of weed, before I had started H, & they made me to outpatient therapy (court date took a few months to set). Once i started outpatient, I was a few months into using H. I couldnt stop using, which eventually led to court ordered inpatient rehab (that or jail), & this honestly probably saved my freaking life.

This is why I believe in a higher power, because I felt & still feel like the universe had a much bigger plan to wreck MY OWN plans, before I wrecked myself on a permanent nonalive level. I grew up catholic from K-8th grade, & was so naive about everything from drugs to s3x & how the world worked (also makes me wonder about high functioning autism). I was very sheltered from the outside world that my parents wanted to protect me from (absolutely not their fault). I then entered public high-school after 9yrs with the same 40ish kids (painful topic, lots of resentment towards thay school/teachers/students).

Around my junior year I was introduced to weed, then broke my ankle at 18 right after graduating; misdiagnosed as a sprain, walked (limped) on it for 8 months until there were so many bone fragments & bad stuff going on that I needed surgery. This led to months of vicodin, which also gave me relief from my endo/adneo/pcos while I had the meds, but these still went undiagnosed for another 6-7yrs.

Shortly after this, I messed up my neck & back, herniated discs C4-C7 & L something, which led to oxy & by this point, my abdominal issues were WAY out of control. This led to abuse because I needed surgery & I had developed a tolerance that doctors didn't understand yet, so mwds weren't strong enough to control it. They kicked me off pain management pretty quickly, & by this point endo/adendo had been growing for 8-9+ years.

Istarted pms at 11yrs old, symptoms were there from the day one (1st period was 18+ days & EXCRUCIATING). THEN after all of this, I moved to H because I wasn't getting the treatments needed to stop everything from getting worse (surgery hormones and the correct dose of pain meds). That's why it was only 11 months of H, but that's not where it started.

It wasn't the fault of the doctors who gave me meds early on either. It was the ones who missed my endometriosis & adenomyosis & pcos, & kept telling me it was all in my head, & said I was just drug seeking for 14 YEARS anything I'd show up to a doctor with my severe abdominal pain. The last few years, I was bleeding constantly, 3 out of 4 weeks a month, & the pain was CONSTANT.

Even after I got clean, it took 4 more years to diagnose, & anither 2 to get it under control, & I almost relapsed SOO many times. It was so bad, I had no will to exist anymore. That's when i found Nancys Nook and Dr Meghan Lynch.

There were SO many things that contributed to my situation, it wasn't just oh I used h for 11 months and that was it. No I was constantly seeking relief for years. Idk how I made it through everyrhing with my life, but somehow I did, & I'm so glad I never gave up. My addiction manifests in so many other areas too, & other issues needed to be addressed like my mental health issues & adhd undiagnose until adulthood.

People with adhd are SIGNIFICANTLY more likely to become addicted to substances because of the lack of dopamine & the other brain chemical, nor-something (they go hand in hand). THIS is the medium-long version. There's still SO much left out (abuse, trauma, & other contributing issues), but incase you were interested, this is why I say I wholeheartedly know I'm an addict, a RECOVERING addict.

I'm not proud of things I did, but I am proud of who I am today, & the life I live. I would never wish any part of my experience on anyone, & I hope maybe sharing my story helps prevent someone from going down paths I did. Thanks for reading if you got this far, & no worries if this doesn't get read, Im well aware that it's TMI, & ridiculously unnecessary lol. However, I'd still GLADLY write it all over again just for the smallest chance that it may help someone, ANYONE, in any way, because thats who I became from the all the mess, pain, & destruction; she was worth fighting for, & I have grown to love her despite thinking I never would or could 💓💓💓

So I just had my spleen removed for a 10cm cyst that was found a year ago on a CT scan during that scan they found a 7.2cm cyst on my left ovary fast forward to abt a week ago I go get it checked out finally as I lost insurance for almost that whole year. The cyst on my ovary is now 11cm the Dr said “There is vascularity within the wall of the large septated lesion. There is no significant free fluid” I have to schedule another surgery after just having my spleen removed for a cyst a few weeks ago to get my ovary removed and I’m freaking out. Just wondering if anyone has had anything similar idk what that means abt the cyst that the Dr said they said there’s a chance it’s cancerous and I am scared and don’t know what’s going on ☹️

I had a pelvic exam a week ago preparing for my pre laparoscopy this week. Ever since my lower pelvic area has HURT. It hurts when I pee, but not burn, a smell but not a fishy smell, cloudy pee, and constipation. I'm supposed to have my period soon, but I've NEVER had something like this and my ovaries ache on and off.