r/Endo

Just wanted to share that I started Low Dose Naltrexone about three months ago. I started at 0.5mg and have gone up to 2.5mg so far. I noticed immediately less bloating pre period and now this month I almost thought I wasn’t going to get my period I was barely feeling bloated at all and didn’t have any of my usual pretty extreme breast swelling and nipple pain that I get for two weeks leading up to my period. Then today I started my period without even knowing. I don’t think that’s ever happened for me. I always know because I start severe debilitating cramps for hours before the bleeding starts. The only thing I’ve done differently is starting the LDN and my usually extreme pms symptoms have only improved each month while I’ve upped my dose. I know it doesn’t work for everyone but I will absolutely be continuing and hoping this improvement also continues!

I got laid off this time last year too, it took me 6 months to find a new job that ended up being a massive paycut. In that time frame my endometriosis progressed I believe from stress, I’m stage 4 now. It was so stress and hard on myself and my relationship… and now this new job has laid me off exactly 1 year and 1 week later like some cosmic joke, right after I got ADA to work from home before the much needed surgery I have been planning. On top of that my partner and I broke up because he didn’t want to be there for me tonight, he wanted to go out to dinner with his friend and this led to a big fight where he told me how much he resents me for all the stress that my disease and job instability in the last 2 years have put on him.

I’m so down, it feels so emotionally, mentally, and physically difficult to be here right now.

Did fibrosis show up on your MRI? I recently had surgery and had a lot of fibrosis. Post surgery now and still having a lot of pain. I’m wondering if the fibrosis on my ligaments are causing this so thought about getting a MRI?

Can anybody who has had uterus actual ligament endometreosis please describe their pain to me?

I’ve had right lower abdominal pain for 5-7 years now. Had always felt like a deep, deep internal ache. Sometimes a stretching and pulling sensation. Also very sore abdomen to touch and an intermittent lump appears.

I’ve had a colonoscopy which was normal as well as CT’s. They have no idea what is is still

My right ovary has always been clear on ultrasounds but they discovered a 7cm mass on my left ovary that has been present for a year now. Slowly growing from 5-7cm in that year. My CA125 markers came back positive by HE4 negative. I am currently 30 weeks pregnant. Since 16 weeks pregnant, the pains have gotten progressively worse. Almost always present and more sore.

The pain is sometimes recreated when I push to open my bowels as well. I’m trying not to spiral and think the worse. I’ve never had bad/heavy/painful periods before

Any one with these similar endometriosis symptoms??

I had to go to the hospital yesterday for intense lower abdominal pain on my left side, the ultrasound showed that I have an 11.5 cm cyst that is suspected to be an endometrioma. I have no previous history with irregular or overly painful periods so I’m so confused on how I have endometriosis.

All of this started about two months ago after I took a plan b pill. I went to my primary doctor about three weeks after taking the pill because I thought I had a bladder infection. They treated me for one and the antibiotics helped, after finishing the round they told me the culture was negative for a bladder infection and said I don’t need to come in for imaging unless the symptoms come back.

(I still haven’t gotten my period since taking the Plan B and I am normally extremely regular)

Yesterday the symptoms came back and it was unbearable. I’m wondering if there’s anyway it could be a hemorrhagic cyst that was mistaken for an endometrioma? Or if the Plan B could’ve caused rapid growth of a pre-existing endometrioma? I didn’t get many answers at the hospital. They told me they didn’t recommend surgery because it’s likely to come back, and pretty much only offered me bupropion and referred me to a specialist that I won’t see for another month. I’m in so much pain and discomfort I’m so confused and don’t know what to do.

So this is my 3rd pack where I took the two white pills and skipped the browns and I haven’t bled for awhile but I just took my last white pill yesterday and started my new pack today and I noticed brown gooey discharge. I have been stressed and my IBS is acting up so do you think that made me randomly get brown discharge since the pill makes our lining thin?

I have so many symptoms that are just making my life so difficult. I don't have insurance and can't afford surgery. I have other health issues that have made it hard for me to work. Honestly just feel like this disease is eating my insides and there isn't a thing I can do about it. I also have a dermoid cyst, fibroids, and a suspected fistula. I am so tired of living this way.

Hi girlies. Trying to stay as positive as possible. Accepting the fact that it's achrojic disease with surgery the only option is eating me from inside.

Fill me up with everything I need to know to have a fulfilling life with endo.

- diet - what are the non negotiables.

- when can I have intercourse

- LUPRON - Luprelide - what are the side effects. How to live with it. -- I will take it for 6 months.

- and in general how to stay collected and calm

So I’m currently sick and also just started my period. Every time I cough, which is a lot, I have a shooting stabbing horrible pain in my right ovary. Have any of you experienced this? I notice if I lay down and bring my right knee up to my chest before I cough it hurts less but what else can I do? The pain is awful it feels like one more cough and my ovary is just gonna explode

I've been reading a lot of stories on here about women who have butt and/or leg pain with their endometriosis. I've also read that for these women, endometriosis was found on their uterosacral ligaments. Once removed, they experienced pain relief.

What I'm wondering is - is this a spot that most specialists routinely check? or is it something that is discussed between the surgeon and patient prior to surgery?

I have my first excision coming up and I'm wondering if she'll be checking this area.

(I have of course sent the care team a message) but I'd like to know others experience as well.

Thank you ladies! 💕

Hi! So I’ve been to a couple of specialist and am suspected of having endo, I have not been formally diagnosed due to the fact that I cannot afford the $6000 out of pocket expense that is not covered to do the surgery for the diagnosis.

I have been dealing with the classic endo symptoms since reaching puberty, I am 23 now.

I am now dealing with something extremely abnormal and am not sure if it is related and I am feeling extremely anxious because my doctor didn’t have any answers for me. I am scheduled for an ultrasound on Monday so I can provide an update if I get one.

My periods are usually right on time, maybe a day early or a day late if anything but this past period I got a week early. It was unlike any period I’ve had before… no cramping but still some bloating and other pms symptoms. The even more odd part is it lasting for 8 days when it’s never lasted more than 4 sometimes a little spotting on day 5.

I am now extremely worried because it stopped on day 8 but a couple days later (day 11, today) it started back up and I am now getting hit with cramping and EXTREME mood swings. Like so severe to where I could not stop uncontrollably crying, extreme anxiety, extremely sensitive, etc. I mean I literally thought I was dreaming because of how messed up my head was. I’m now being a Google doctor which is always the worst and now I’ve freaked myself out even more (why does Google always convince me I have cancer??)

Anyways I’m getting bloodwork done tomorrow and ultrasound on Monday so I will update. But I need to know if anyone has dealt with a crazy abnormal period? I don’t have a mom or any women in my life I can ask so please if you can I’d love to hear your experiences. Thank you!

Side note: I tested negative for pregnancy while at the doctors office so anything pregnancy related wouldn’t help.

I have been able to reduce my use of NSAIDs by over half by using the following - hope it helps!

• Melting cubes of fresh frozen shredded ginger into hot water or smoothies (HUGE!)
• DeLune Cramp Aid Tincture (HUGE!)
• Tens/heat unit
• lots of rest and anti-inflammatory diet

Hi all- looking for some feedback on visanne. I have been on it for almost 6 months now but it has ruined my mental health and I’ve gained about 20 lbs while on it. I strength train 4x a week and it only seems to be getting worse.

I have an endometriosis mapping scan in the middle of May. Do you think it would make a difference whether I’m on it or off it? My doctor originally said no, but I’d like to hear opinions from others.

My health history (if it matters) is this: 33 YO F, hashimotos, ADHD, psoriasis (currently taking a biologic for it), PCOS (was on metformin but deemed I no longer needed it, plus the GI side effects got bad). I also suffer from low iron, had an infusion at the end of 2023 and suspect I need another.

I’m feeling miserable and just want to hear other peoples stories. Please be kind as I’m feeling quite vulnerable 🙂

I found out, after waiting months since my referral, that the BSGE specialist endo centre in Glasgow rejected it. It was gynae who put me forward for care there as they deemed my endo history too complex for them.

I had endo removed from my bladder three and a half years ago. It was on the cusp of being DIE, literally by the tiniest amount. That tiny margin was all that prevented me from having to have my bladder resected. My bladder symptoms are coming back rapidly. I had also had DIE elsewhere.

In addition I have severe symptoms of thoracic endometriosis (thankfully no longer coughing up blood, but that can cease the longer it goes on). A very probable plaque of endo was identified (rarely happens) on an MRI. It was agreed by a cardio thoracic surgeon that there is very likely a large lesion on my diaphragm. I was to have VATS surgery, but for financial reasons mainly I was forced to pull out.

So, without die hard proof of extra-pelvic endometriosis, and no stage 4 history, I don’t meet the criteria for BSGE care. But I’m too complex for gynae?

Does anyone have any advice? I’ve checked the NICE guidelines and it does appear I’m falling between the slats here 😭😭😭

Hi all! I finally was able to get a Dr to believe my symptoms only for my MRI to come back completely normal and said no signs of DIE. However, it did say “Prominent parametrial veins, nonspecific, can be seen with pelvic venous congestion syndrome”. I’ve never heard of this before so if anyone has any experience with it, I’d love some advice!

I’ve already done googling and while I guess some of the symptoms sync, not all, and I feel very defeated that I don’t have (visible) endo. I feel like all the pain I’m feeling is me making it up and I’m a baby/being a bother.

I have a follow up to discuss the MRI Monday, but just wanted to see if anyone had any experience with this. Thank you all!

So upset with the outcome of my lap. My last lap was in 2021 endo found removed, fallopian tube cleaned up and needed a hydrodistention due to interstitial cystitis. This time around no endo found, just adenomyosis, which I knew I had based on ultrasound. My uterus is stuck to my abdominal wall. The notes say its the size as if i was 12 weeks pregnant. Aside from hydrodistention nothing was done. My fiancée and I are getting married in June and although we have children from past relationships we really wanted to try for one of our own. Idk how possible this is with my condition and I just want to be pain free😭 I feel like this lap was for nothing and served no purpose ugh feeling so defeated and sick of it all.

So, I was diagnosed with endometriosis back in December after getting scans for PCOS. They found some scarring, but my doctor didn't recommend any additional steps needing to be taken.

I get really sharp stabby pains that I've always assumed were normal cramps, but now I'm wondering if this is actually "normal" cramping or related to the endo.

What's complicated is that I don't get regular periods. I never have. At one point I went a year without one (before learning that's not ok, at which point my doctor had me get an IUD). I started having periods for a bit but they've pretty much gone away again. So I don't really have a strong sense of whether these pains would align with my period or not.

The pains are very sharp and on both sides of the pelvic area, and they don't happen all of the time (so I think they are probably around my cycle even though I don't track it).

I don't experience pain during sex or when using the bathroom (aside from just IBS issues).

I guess my question is - could this be endo pain and at what point do you have to do something about it? Mine sucks when I'm like running a meeting and experiencing a lot of discomfort but it's not debilitating on a day to day basis or anything. Although I've had times where I was doubled over on the couch.

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Severe endometriosis, consultant won't do surgery yet as I have now been diagnosed with diminished ovarian reserve suspected to have been caused by the endometriosis. I'm 30 years old 🫠 already had 2 losses and I am being told the miscarriages are not related to the endometriosis. I heavily suspect it is. So now not only do I have this stupid disease it's also messed up any chance of having a successful pregnancy. I am furious it has taken this long after going through the process of 5 years and my AMH probably just dropping lower and lower every year to the point now it's 0.4 pmol/l and even if I was successful in IVF or natural the endometriosis is probably just going to end up in another loss. I don't even know how to navigate this, anyone with low AMH after endometriosis just got the surgery anyway? or anyone in a similar position because I really don't know where to go from here.

okey it will be a long story but i will make it shorter 2 and a half yeras ago me and my boyfriend did the did the wrong way(after 5 times the right way) and i woke up in pain like felt like my body was attacked (and told my mom i am not a virgin anymore yikes) since that day me and my mom were on a search to find out what that was first we thought it was aregular uti than vestibolitis like a pain at the like down of the entrance to the vagina and yes i have a pain there but also i have a bladder stress and just pain and also my nerves down there are very very stressed and stiff and just yay, so after 2 years and a day after me and my ex broke up(what an asshole) i went to my gyno and he said that maybe i have endo and so we went to do an ultrasound and the doctor said that she saw aome liquid on the bladder and finally i had some answers after evry doctor for 2 whole years telling me they dont know how can they help me(like why are you a gyno if you dont know how to treat me) after that ultrasound we went to a specialist on endometriosis and she did a test to and said she doesn't see any liquid but i sure am with endometriosis and it is reflecting on my bladder just ther is little proof of that like i fell hopeless i know i have endo but the doctors just are not helping

i was on visabelle/visanne for 200 days it helped me a lot but them my sister(she is studying to be a nurse) told me that it is not healthy to not have period so i stopped and it was awful then i went to zoely but after like 6 months the pain was resurfacing and it did not really help and now i am back on visabelle and its not helpint at all i feel like i dont have any pill also its not a birth control (funny at first we thought that i have an allergy on condoms) so yes, and also now i get this muscle cramps like after a leg day stifness but in waves like after going to pee or doing number 2 like its very painful and i just cant go like this anymore this endo fed my depression for almost 3 years now and i just cant go like that without really knowing what liquid or no liquid and if there is a treatment really for me that will really help not just the urine pain but also the muscles pain and reqlly just stress in general, if you have any suggestions for pills and for muscle pelvic stress or pain i will gladly accept it.