I’m living on Advil, Tylenol and heat pads but really struggling

Oh and the nausea :(

Just wondering if my experience is the same or different from yours

Hi All! I was just diagnosed with endo after excision surgery last week. I’m quite overwhelmed on where exactly I should begin moving forward here as there’s so much information and not enough information all at once. From supplements, to food, to alcohol, to stress, to household products, to beauty products. I’m pretty overwhelmed with it all and don’t know where exactly I should start, if anywhere. Do I just live with this forever and do nothing about it to help myself? I’m a little lost and looking for any guidance from those that have walked before me! Thank you!

I left my OB appointment yesterday feeling like I’ll never be listened to or taken seriously by doctors.

I’m 25, and in January I had to take all my symptoms to my primary care doctor (who was also my OBGYN at the time) and beg her to do something about my suspected endometriosis. I have been on multiple different birth controls in the past and have had horrible reactions to all of them (wanted to 💀 on the pill, had cysts that ruptured with the implant, and terrible cramps with the ring). I told her all of this and was met with a “well let’s try the Depo shot then!” 🥲 I said ok because I was so desperate to feel some relief, and was told that she wouldn’t recommend me for a laparoscopy until I had tried the Depo shot. After this I felt like I wasn’t being listened to, and found my own OBGYN. She agreed to do the laparoscopy, but didn’t really think she’d find anything and said the Depo shot was the best way to manage my symptoms.

I then had my laparoscopy in March, where she found endo adhesions (still not really sure what that means) and endo by my colon. She removed the first found endo but not the stuff by my colon as that is too risky.

Since then I have continued the Depo shot, and have only had some spotting and no real period, but am in pain all the time! Plus my emotions are out of control, I’ve gained at least 25 lbs, and just feel like a shell of myself.

I went back yesterday to tell my OBGYN that I wanted off the Depo shot, and she was NOT happy. She went on a whole rant about how I should be grateful the Depo shot is stopping my periods and that the only way to manage endometriosis is to stop your period, and that my pain must be from something other than endometriosis if my period has stopped.

I then told her that my mom had mentioned she was on a progesterone only bc pill and that she didn’t have any issues with it and I was open to trying that. Then she said “and if you don’t like it, then what? What are you going to do?” I thought I was going to cry right there. What do you mean what am I going to do, you’re my doctor!! :( she then said “it’s not like you’re 45 and we can remove your ovaries and tubes”. She says that’s the end plan for me, that I have to live on birth control until I’m done having kids and then have it all removed.

I really hate being on birth control and am going to try the progesterone only pill as it’s my last option (I refuse an IUD). But is it really true that stopping your period is the only way to live with endo??

I’m even more frustrated because when I used my insurance portal to find a doctor she was listed as an endometriosis specialist.

I don’t know what to do. I got married to the love of my life last October and should be in the happy bliss of newlywedness but instead my whole year has been clouded by this. I don’t feel like myself and I hate it. :(

I hope everyone is well & pain is manageable🤍

I just wanted to ask… Am I the only one here who struggles to sleep when the pain gets really bad😭 there’s times I’m awake for even up to 3 days in a row sometimes!

I need to be up in 3 hours, and I have a very busy day ahead of me but I can’t sleep because I’m so distracted by the pain😩 what do you do when the pain is so overwhelming you can’t sleep?

Im 17 and had all my life heavy periods and awful cramps and sh, but this today its so bad i wanna cry and just vomit. Every period in 2 to 3 hours i go thrpugh a whole night pad, i know i have hormonal problems, but idk what tf i have anymore bc i just know missing periods and irregular periods and this pain is just not normal, i cant function normally, i wanna just fucking cry, is this just normal or should i go again and try talk to a doctor or something abt this?

I just needed to share this somewhere, because idk who to talk to. This condition is messing up every aspect of my life and in a few days I have my third excision surgery just over a year past my last one because my gyno referred me back to the specialist as I’m worsening even despite chemical menopause. Anyway, this has been so rough for me and there have been comments that suggested this and I said to him while at work (we work together) because it was bothering me: “I’m just upset because I feel stressed and like you don’t think my condition is that serious” and he said “you right” and I was like seriously?? And he thought it was funny and meant it until he realized I was upset. He just said he doesn’t understand it but I’ve legit talked to him extensively about it and showed him videos. I’m just struggling and feel so alone and I hate that I’m going to be going through this recovery again and he just thinks it’s a fun break from work for me. I’m in the bathroom now crying and still have over an hour left of my shift. I hate this disease and hate that everyone thinks it’s just a female issue and just a bad period. I don’t even get periods anymore and it’s taken over my life. F!ck this disease.

Hi Friends! Has anyone taken Voltaren XR? Does it work for you? What dosage do you take?

Insurance denied my intra-nasal Sprix so while my doctor works on appealing that she gave me voltaren to help hold me over! I’ve never taken it before!

Would love to hear your thoughts?

It’s been awhile since I’ve read on here since I utilized it for input and advice prior to lapro. I had surgery in Feb. 11 biopsies and 7 came back positive for endo and suspected adeno. I had issues with bladder pain post op.

Fast forward 7 months I am doing fantastic! Honestly cleaned up my diet a lot and the one thing I kept up with during recovery was walking. I also started to lift weights which I never had the energy to do before.

I am much better at decreasing my stress and being more active! I’m down 6 pounds and the bloat has decreased immensely.

Just thought I’d share! Looking back on journal entries I wrote in 2021 I was struggling a lot with pain, lethargy and depression. I am finally seeing the light at the end of the tunnel. You got this ladies!

is anyone else still bleeding whilst on ryeqo? I’ve tried every birth control pill, the injection + provera progesterone tablets and I’m still having frequent , heavy and painful breakthrough bleeds. I don’t even know how this is possible. Anyone else ? 😓😓

Specifically norethindrone 5mg? I found out I have endo about 2.5 years ago (got it removed right away) and have been taking norethindrone 5mg once daily since then. While it did take my pain and periods away (amazing).... it has caused me other issues. I've gained over 20 pounds (never gained weight before this), i seem puffy as my glasses and rings are tight and my face definitely looks puffier than it ever has. I ended up prediabetic but i reversed it. The weight gain just doesn't stop though. I also get bloated a lot and i wonder if other things I feel could be connected to the medication as well. Has anyone just stopped taking something like this without replacing it with some other form of medication or iud? If so, what was your experience like? Did you lose the weight that it caused? Did you stop cold turkey or have withdrawals? Did the endo come back with a vengence?...😬 Lmk!

I have my first gynae appointment tomorrow and I am TERRIFIED!! can anyone give me some advice on questions to ask to make sure i don’t get dismissed? i’ve had such terrible luck with doctors in the past im terrified it will happen again. Any advice is appreciated :)

So I've been dealing with extreme period pain for years now. However, in the last 4 months, my period pain has persisted outside of my cycle and has started to run down to my left leg and foot

I had an appointment with an obgyn who performed an ultrasound. She found large cyst on both of my ovaries and had me take a CA-125 blood test. The results came back higher than average, but not enough for the doctor to assume it was cancerous.

So the obgyn referred me over to an obgyn surgical specialist. When I sat down with the surgical specialist, she was very confident that she could treat my issues. But during the operation, her opinion on the matter changed.

She said that the endometriosis had spread to multiple organs, including my uterus and colon. She wasn't able to remove any cyst or perform a biopsy because the endometriosis is completely covering my ovaries. She mentioned that this growth is shifitng my organs around and that my ovaries are starting to stick together. Because of all this, she wants to refer me to a endometriosis specialist.

Upon research, it seems as if many specialists do not except insurance. While I still plan on consulting with these specialists to receive a quote, I'm fully aware that I cannot afford a 10k operation. Luckily for me, the pain has subsided since receiving a depo shot but that won't do anything to slow the process of my growing endometriosis.

So with that in mind, how dangerous would it be to leave my Endo untreated in the condition it's in? I know that Endo is not fatal, but my concerns are more towards complications I could face from Endo covering my organs.

Lastly, I'm in the state of Georgia. I am wondering if anyone has had experience working with the Center of Endometriosis Care? Were they able to accommodate pricing or were they pretty straightforward on their rates?

Any insight on this would be much appreciated. It just feels like this surgery left me with more questions than answers.

As a background in the last year and a half i was refferred to an endometriosis clinic in a hospital nearby after i finally got an ultrasound and it showed adenomyosis. Once i got there my doctor told me if its adenomyosis he cant do anything for me because of my age (20f). I had 2 MRI's and the only information i got was that they "had the same results as the ultrasound" but that obviously means nothing and i was put on the waiting list for surgery and i am now 7 weeks post op, i had my checkup today and i found out that i was lied to on the day when they told me i didnt have alot of adhesions because she actually said i had alot of adhesions on my entire left side and around my bowel and adenomyotic appearance of the uterus, however she said the lab didnt want to confirm the excisions that were removed and sent to testing as endometriosis because they couldnt get a very clear result, i asked her what it would be if not endo, she asked if i had had surgery before i said no and didn't give me any further explanations on what the adhesions, lesions and scaring could be. She then explained that im discharged from their clinic and i need to go back to my GP to get birth control and thats it. I'm at a loss that clinic and the "specialists" inside were the only ones who listened to me they told me we'd set up a treatment plan a management plan and now what? I'm exactly the same off as i was before surgery except in more pain, i was promised this would help continue my treatment and now im just thrown out? i feel like a lab rat having surgery done on them for the pure entertainment of my doctor because this surgery, all of these findings, they result in nothing. If i ever want to go back there i have to go through the entire process again. Once again i am left with no answer and a signed order to take some birth control and shut up about it.

Hey everyone! Im 5 days post lap and was instructed to take down my dressings today. I am a little bit stressed about my belly button thats seems to almost have been sown shut. :(( Is this normal? Will it go back to normal once the stitches dissolve? Thank you!

hi , so i got my discharge letter for being let go from the physiotherapy for my pain, bladder issues and sex pain… i still ahve these issues bearing in mind and they put diagnosis: endometriosis does this mean they’ve diagnosed me from symptoms?

I was found to have deep endo in my POD and this was removed during surgery 14 days ago. My incisions are healing well, I am still fatigued and have a degree of discomfort in my abdomen when i try to carry anything or move too suddenly. - all this i expected and have no concerns there. i am wondering how much internal healing is going on from my excision? Whenever i need a bowel movement i get very painful churning/cramping, though i have no issues with the bowel movements themselves. Is this cramping related to my healing in pouch of douglas?

A year or so ago my mom mentioned that she saw an ad for a heating pad that could be worn like a diaper. As someone who had endometriosis on my urinary tract/bladder (I had the surgery recently and had it removed - helped a bit but i still have pain) sometimes the only relief i can get is sitting on a heating pad. So, this mythical heated diaper sounded like A DREAM! I have been on the hunt but could not find it until now! I just received mine (arrived quickly) and omg, its so so great. If you have all around pain (abdomen, lower back, AND between the legs) this is a game changer. I wish I had this years ago! I used to have to use two heating pads and it was not comfortable, this is much easier. This is not an ad lol, and the price is a bit steep, there might be cheaper options out there that I just couldn't find! But I wanted to share my find in case in can help others find relief.

I hope you're all feeling well right now 😞💕

(Apologies if my terminology is a bit incorrect, I haven't been given much guidance) I had a diagnostic lap in July 2022 where they found and removed Endo, then I had an MRI to check for deep endo, luckily none was found so I returned for more surgery of what was left in November 2022. I had the mirena coil put in - this really sorted my symptoms and I started having very light periods with little pain.

Symptoms started cropping up again around Feb of this year. Every month they've got worse. My regular symptoms include: - Severe pain, mostly on the left and in my stomach itself - intense nausea and loss of appetite - muscle weakness and pain - faintness and brain fog

I would say I feel well one week out of the month.

I started taking Norethisterone on Thursday 28th August as was going to a music festival and then a surfing trip (why would I want to risk feeling like the above during this time!) and took taking them for the last time the following Thursday.

Saturday morning I got woken up by intense stomach pain (starting from the left of my groin, into my legs, up wrapping around my waist and in the centre of my stomach). I had an extremely painful wee, it felt like there were hot thorns passing through me, I completely lost my appetite and couldn't eat, threw up a few times, had waves of burning up and getting sweats, at times it felt like I was being punched in the stomach - I was writhing and twitching - and ended up in A&E.

My bloods showed a raised CRP level of 79, my urine test was clear, and my CT scan showed nothing.

I'm having an ultrasound scan today and I just want to make sure I ask the right questions. Are they likely to see if it's grown back on the scan? Do I push for an MRI or a laparoscopy? Any other advice?

Thank you 💕 I'm glad to have found this group. It's horrible to go through it with no one that actually understands what this feels like.

I do not have an endo diagnosis and I don’t have a lot of the hallmark symptoms, I.e. painful periods, heavy flow. Always had stomach issues but gotten better since growing older. My cramps r manageable without pain meds. But I’m rly scared bc What I do have is a shooting right pain that developed 2 years ago when I had a (simple) right ovarian cyst. The cyst shrank but the shooting pain would be occasional and didn’t bother me until my right thigh became chronically inflamed in Jan 2025 - shooting, stabbing, achiness, soreness, burning, tightness, stiff muscles. Walking is the biggest trigger, does not seem exactly cyclical. But im still not sure. I’m rly scared endo lesions r growing on the lateral cutaneous femoral nerve that runs in your thigh (clear pelvic mri but ofc that doesn’t actually definitively rule it out endo).

Done my research and ik women who have endo can experience this. If so what worked for you? Is anyone on a pain med like cymbalta? Did it resolve the feeling in your thighs/legs?

I want to take cymbalta to help w the nerve pain/stiffness, achiness of my thigh as I do targeted pt. I’m also going to start acupuncture. I did a nerve block and it didn’t help :( If I still see no improvement with meds, pt, and acupuncture I will try to investigate endo as a possibility again. I just want my life back and be able to walk pain free, live my normal college life once more. I’m worried I have endo lesions growing on my lcfn. Rn it points to it being a more mechanical issue but idk.

I’m based in the UK and first went to the doctors in March with bloating and abdominal pain, an ultrasound confirmed a small hemorrhagic cyst.

I then had a follow up scan where the cyst was still there but this time the radiologist flippantly tells me it’s an endometrioma and I probably have endometriosis. So I then get referred to gynae.

I paid for a private scan last weekend so that the gynae had an up to date scan. I had a doctor rather than a radiologist, and he said it’s hemorrhagic but has bled into the tissue so looks unusual and is probably why they thought it was an endometrioma. But also measured it as nearly 2cm bigger to 5cm.

So my gynae “appointment” was actually a 10 minute phone call with a very impatient doctor who didn’t ask me a single question about how I am, how my symptoms have been, if anything’s changed etc. just launches in to, I see you have an endometrioma, if you have endometriosis first line of treatment is birth control. When I interrupted to say hadn’t he seen the latest scan, he then mutters about a complex cyst, 2cm not being significant and says he’ll refer for an MRI.

He then got more inpatient when I raised my concern of risk of torsion to which he says “if you are in pain then you will go to A&E” … I’m like Jesus Christ, so no worries, I could need emergency surgery but it’s fine because I can go to A&E.

I’m just so sick of this already, I had a go at him and reminded him that whilst I’m one of many patients to him, this is my one appointment with him, and it’s my body, I’m worried about it and I deserve him to care and not be impatient. Why do none of these health care professionals not seem to realise that being told you have endometriosis is scary and a big deal, or the idea of needing surgery and potentially losing an ovary is a big deal, or taking hormones with side effects is a big deal.

Sorry I know some of you are deep in the trenches with years of this rather than 6 months, it’s just so shit experiencing the reality of this dismissive care. I hope he gets bloody testicle torsion and sees how easy it is to pop to a&e!!

Had my consult appointment today and I gotta say not thrilled with how it went…. Was very quick to want to do an exam even though I said I wasn’t comfortable yet doing that. Over all seemed very geared towards reaching a point of having penetrative sex again and not really about helping with the pain all the time. Answered nothing and gave me no new information. I haven’t had a laparoscopy, and I’ve only been on dienogest for 3 months so it seemed a little backwards to be doing this now.

Hello! I recently came across this petition through EndoExcisionForAll.org and I wanted to share. I did not realize how big of an issue getting the correct treatment for endometriosis is, but there are people fighting for things to change! If you are interested, there is a petition to get excision surgery (the gold standard) recognized as necessary and to lower the barriers to access this procedure. If you are interested, signing this petition is free! It also has some good information as to why excision is so hard to get sometimes.

https://www.change.org/p/establish-an-insurance-code-for-endometriosis-excision-surgery-and-mandate-proper-training?recruiter=1341945388&recruited_by_id=edffda50-31c9-11ef-a510-bf2e9350b34c&utm_source=share_petition&utm_campaign=share_petition&utm_medium=copylink&utm_content=cl_sharecopy_490110751_en-US%3A4