r/adenomyosis

It's been a while since I started this journey. In May I got the MRI that was supposed to precede the final step in the journey.

It disclosed I have some cysts, fibroids, and definitely at least a good deal of endometriosis going on.

The pain has been constant since my last few periods ago. I am somewhat grateful for it, in the sense that it will cause less second guessing and hopefully just make me really grateful for the surgery that is now scheduled for 2 weeks from today.

My uterus is getting yeeted. They will indeed yeet the ute. They are also removing tubes, cervix, any fibroids and cysts that are there. They are trying to keep the ovaries, but they might have to remove at least one, if not both.

The pain has been so bad of late that there is hardly anything that puts out the fire. I am looking forward to hopefully a more stable future. As I have dealt with some of the worst pain and worst periods in my life recently, and I've had some bad ones, but they will be the last periods I ever have.

I'm looking at the bleed that comes with the recovery as an elipses....

....

Four dots. Periods with some finality.

Not ... three dots, because that would be it could come back. Four dots and then no more.

My post yeet ute time....

Trying to keep calm and make things as low key and stress free as possible so I can recover more easily.

Any suggestions?

It's laparascopic and through incisions. My belly is so tender now and the pain is from my groin straight up through my lower left rib.

Hi, everyone. I'm 43. I've have Adenomyosis and recently been told I have endometriosis as well. I don't have my follow up appointment on next steps with the gynecologist till November. My question to anyone with both these conditions or just one, have you manged to help manage your conditions with diet? In all honesty I'm very over weight now and really struggling with that, I can't walk very far, struggling to do my gardening, can't exercise, even house work is tough. It's really getting me down and I find myself comfort eating which is making the weight gain worse. I find it difficult to stick to healthy eating when I don't have the distraction of some kind of exercise. I've been seeing a lot of posts on Instagram and women that have fixed there conditions with anti inflammatory and alkaline diet! But honestly it could be all crap. So has anyone genuinely managed to do these diets stick to it and has it helped?

I’m 22 and currently 67 days since my last period. I’m definitely not pregnant, but I’m getting increasingly frustrated because my periods have been all over the place for the last couple of years. They’ll be regular for a month, then really late, then regular again, then late.
At the moment I’m also having this weird pressure/pressing feeling around my bladder and needing to wee much more frequently than usual. I’ve also previously posted about my bowel movements because they’ve been alternating between constipation and watery/loose stools, and I’ve noticed blood occasionally.
My periods themselves can be extremely painful sometimes the pain is so bad that I actually vomit. I’ve been trying to get answers for this for a while. I’ve had scans and even a laparoscopy, but apparently nothing significant has shown up.
I’m honestly getting really tired of constantly having symptoms but not having an explanation. I know nobody on Reddit can diagnose me, but has anyone had a similar combination of:
Very painful periods / vomiting from the pain
Irregular or very delayed periods
Bladder pressure and frequent urination
Constipation alternating with diarrhoea/watery stools
Occasional blood in stool
Normal scans/laparoscopy
Could this still potentially be something like endometriosis, or are there other things I should be asking my doctor to investigate?
I’d really appreciate hearing from anyone who has gone through something similar, especially if it took a while to get a diagnosis.

TL;DR: I have adenomyosis + deep infiltrating endometriosis, with adenomyosis likely causing most of my pain. Despite doing a lot to manage it, I still need pain medication around 10 days per cycle to function. I’m very hesitant about hormones but am now considering Mirena. Did it genuinely improve your quality of life, especially pain/PMS/luteal symptoms? Did you experience psychological or sexual side effects?

I’ve had extremely painful periods since around 16/17, sometimes to the point of nearly fainting. More recently I’ve also struggled with severe abdominal distension, pelvic pain, disrupted sleep and PMS, with the luteal phase often being the worst.

I was recently diagnosed via MRI and transvaginal ultrasound with adenomyosis and deep infiltrating endometriosis around the uterosacral ligaments. From what I understand, the adenomyosis seems to be the main pain generator for me.

I’ve been trying to manage it quite intensively: pelvic floor physiotherapy, TENS, daily heat, omega-3, curcumin, vitamin D, Vitex and a multivitamin. Overall I actually feel better and less systemically inflamed, but the pain itself hasn’t disappeared. I still need pain medication for roughly 12 days of my cycle just to function normally.

One interesting thing I’ve realized is that some of what I previously thought was just extreme luteal fatigue/grogginess and feeling generally awful seems to actually be low-level pain. I sometimes don’t consciously register it as “pain,” but when I take effective pain medication, I suddenly feel significantly more normal and functional.

So I’m reaching the point where managing this from ten different angles is getting exhausting, and I’m considering Mirena/LNG-IUD, even though I’ve been very reluctant to use hormonal treatment. Preserving my fertility is important to me, so hysterectomy obviously isn’t something I want at this stage.

I’ve read that Mirena mainly acts locally, that many women still ovulate and maintain estrogen production, while it can significantly reduce adenomyosis-related bleeding and pain. I’d really love to hear real experiences from women with adenomyosis, especially if you also have endometriosis.

Did Mirena:
- genuinely reduce your pelvic/adenomyosis pain?
- help with luteal-phase symptoms or PMS?
- reduce how often you needed pain medication?
- affect your mood, anxiety, libido or general sense of feeling like yourself?
- affect your ovulation/cycle symptoms?
- take months before you noticed an improvement?

And most importantly: knowing what you know now, would you get it again?

I’d also really appreciate anything you wish you’d known before having it inserted…good or bad.

Original post

It’s been just over a week since I had my hysterectomy and I feel like things are going well. I’m still far more tired than I expected, but I only have a bit of soreness in my pelvic area. I’ve overdone it a couple times, especially because I tend to pick up my 3yo out of reflex, but nothing a bit of rest can’t fix. I haven’t taken toradol since 5 days post op and then it was just at night to help sleep.

Speaking of sleep, having a pillow to tuck under has helped me sleep on my side. I tried a few different supportive bands as others have recommended but none were comfortable and supportive. Instead I’ve been using a spare pillow under me and it’s worked quite well.

The biggest problem I’m having is a suspected minor allergic reaction to the surgical glue causing minor redness and itching. My surgeon is in the loop and we’re monitoring closely to make sure no treatment is needed. I’ve had reactions to sutures and such in the past, plus I’ve got some other allergies and autoimmune issues, so this wasn’t a huge surprise.

And yesterday the pathology report came back showing “extensive adenomyosis” which was more of a relief to read than I expected. I had the heavy bleeding, and the massive blood clots, and debilitating cramps. I had the imaging studies that showed issues throughout. But I guess there was still a part of me wondering if I’d made the right choice. Now I know with certainty that I did.

Mine start a few days before bleeding feeling rough, tired, foggy head, swollen sore breasts. Very slight bleeding day one, heavy bleeding and tiredness and shaky day two, day three crazy heavy bleeding, v painful, shaky, feel sick, constantly emptying my mooncup every hour or two. Then, it just stops. And I feel like I just woke from a fever dream. Next day I feel pretty good. Day after that, right as rain. How about you?

I have been a runner for a very long time. I have adenomyosis (and in early 40s) and during the last year I've started to feel horrendous after running. It physically feels like the origin of the problem is coming from my abdomen (after running I become incredibly bloated/swollen/water retention in my abdomen but also everywhere in my body). Has anyone else experienced difficulty with running or other intense aerobic exercise and is there any way this is related to adeno? Or is this coincidence and some other problem is going on? Thank you so much for any and all advice. I've been struggling for almost a year now and I am pretty desperate to figure out what is going on.

Hi everyone. I’m posting this with a hopeful heart and would really love to hear from women who have been in a similar situation. ❤️

My husband and I have been trying to conceive naturally for a few months. I had previously been taking dienogest to manage my endometriosis, and after stopping it, we decided to give ourselves a few months to try naturally.
Unfortunately, after being off dienogest for a few months, my pain became increasingly difficult to manage. The pelvic pain, cramping, and discomfort were becoming too much, so we decided it was time to get checked more thoroughly.

I honestly wasn’t expecting the results we received.
I was recently officially diagnosed via pelvic ultrasound with an endometrioma, adenomyosis, and deep infiltrating endometriosis (DIE). I already knew I had endometriosis, but finding out that I also have adenomyosis, an endometrioma, and DIE all at once was honestly heartbreaking and overwhelming.

One of our biggest hopes is to have a baby, and we really want to conceive naturally. Because of our faith and beliefs, we are not pursuing IUI, IVF, or other assisted reproductive procedures, so we’re trying to understand what natural conception may look like for someone in my situation.

I know everyone’s journey is different, and I’m not looking for medical advice or guarantees. I’m just hoping to hear some real stories that might give me a little hope. 🥹

If you have endometriosis, adenomyosis, DIE, an endometrioma, or a combination of these — and you were eventually able to conceive naturally — I would genuinely love to hear your story.
Especially:
- How long had you been TTC?
- What were you diagnosed with?
- Did you have an endometrioma/DIE/adenomyosis?
- Were you told that natural conception would be difficult?
- Did you have surgery or hormonal treatment before trying?
- And how long did it take before you conceived naturally?

If you were able to conceive naturally despite these diagnoses, please share your story. 🤍

I’m feeling scared and discouraged right now, but I’m also trying so hard to hold on to hope. Maybe hearing from women who have walked this road before me will remind me that these diagnoses don’t automatically mean the end of our dream.

Thank you so much to anyone who takes the time to share. ❤️

Hi ladies, I’d really appreciate hearing from anyone who has been through something similar. 🙏🏻
My AMH is 0.8 and AFC is 13. I have superficial endometriosis outside the ovaries with significant pain, but thankfully no endometriomas and my ovaries are clear. The ultrasound also showed no obvious adhesions or deep endometriosis. I also have signs of adenomyosis.
My doctor suggested laparoscopic surgery to remove the endometriosis lesions and assured me that he will not touch my ovaries. He may also need to take a biopsy.
Because of my low AMH, I’m torn between having the surgery first or trying to conceive before surgery, as I’m worried about losing time or potentially affecting my fertility.
Has anyone here had low AMH + endometriosis outside the ovaries? Did your fertility specialist recommend surgery first or trying to conceive first? And what was your experience with fertility/AMH after surgery?

I am new to this group, so I apologize if this is a frequently asked and answered question, but I had an ultrasound last week that showed "myometrial texture is diffusely inhomogeneous" and consistent with adenomyosis. I saw my GYN provider yesterday, and she seemed to dismiss my symptoms as mostly GI-related and told me to try taking a birth control pill for 2 months and see if it helps. I don't want to wait that long, given how debilitating the pain can be. From my research, the next step at this point is usually a pelvic MRI, but she acted like I was stupid for requesting it. Does her idea of just starting with BC pills sound reasonable or should I request additional testing and treatment. I don't want any more children, so hysterectomy is an option I'd consider.

As the title says, I greatly need third party advice on if traveling to an endometriosis excision specialist is worth it versus seeing someone local.

I have a very long history with endometriosis, adenomyosis, ovarian cysts and chronic pelvic pain.

I have had multiple laparoscopic surgeries: 2 with a regular OB/GYN for ovarian cysts and ablation of endometriosis (one of which caused me to lose an ovary) and one with a MIGS surgeon who confirmed and excised endometriosis on my uteralsacral ligaments and diagnosed probable adenomyosis. Since this surgery I have continued to have worsening pain and have had this provider and my normal OB/GYN suspect that I have nerve involvement.

While I found my recent surgeon to be great, I am looking to have a final surgery and hysterectomy and to also have extremely detailed and thorough work done to check places that I believe couldn’t be done in my last surgery due to constraints from the surgeons scope and time allotment in the OR. I have given serious thought of traveling out of state and out of my area of the country to seek an excision specialist that can potentially provide the thorough treatment I seek. However I do worry that it is overkill at this point, especially considering how I most likely need the hysterectomy to mitigate a lot of my symptoms.

Any thoughts would be greatly appreciated!

Got the mirena 8 hours ago, i was fine the first few hours but since 2 hours i have this intense contraction like (i have never had contractions but i guess it feels similar) cramps. They come in waves, reach a peak and go away and feel like my worst period cramps. Anyone had a similar experience?

After many years of being stubborn (or how I prefer to explain….frozen and unsure of what treatment to try, been offered all the hormones, hyster, lap, etc), I opted to try Slynd before doing something more invasive.

I’m on Day 10 of bleeding….. the first few days were like a normal period, now it’s been a steady light flow…. Is this side effect going to stick around? I’ve read of women who bleed for months. And I’m just not sure if it’s worth it…. Feeling defeated….. 😔

Hi everyone - longtime reader, first time poster lol -- I'm 55 years old no in menopause or even perimenopause, have pcos and have been irregular my whole life up until the last 18 months or so when I was every 28 days like clockwork. i always had heavy periods with clots but the last couple years it would pour out like water and I had severe fatigue and dizziness, tachycardia and went on medical leave. Here's my time line - any advice is welcome

I know I've had anemia since at least 2013 (looked back at labs) but probably longer. officially diagnosed in 2018. probablly had 4 rounds of infusions. flash forward to the summer of 2025, im busy working and just being active walking etc but so extremely tired, wrote it off to several things until I remember my iron and had my pcp check and my ferritin was 8.8. went to ED for tachycardia and shortness of breath. Started medical leave on 11/4/25

PCP ordered infusions (I didn't have a hematologist at the time)

Venofer 200 x 5

11/13/25, 11/17/25, 11/21/25, 11/24/25 and 11/25/26

During this time my heartrate was 115 at rest, i was exhausted, short of breath, dizzy, etc. Just when I was hopeing to go back to work (i have a very active job), I was back in the ED.

11/28/25 Emergency Room Phosphorus 1.1 - I had to beg them to check my phosphorus and when it was 1.1 they laughed it off as being "slightly low" and gave me a double phosphate drink and a prescription and sent me home even thought I was still have symptoms (headache, nausea)

12/13/25 return to work

1/22/25 Hemagtology appt. bring a chart I made that shows every time I have a round of infusions they numbers will eventually drop to ferritin 8-10 and I will need infusions again. She promises she will treat me for any ferritin under 75. Orders infusions:

Venofer 3 x300

2/5/26, 2/12/26, 2/19/26

3/11/26 see reg gyno for extremely heavy bleeding. doc says hysterctomy is the only viable option but not sure if anyone at community hospital will do it because I have had so many previous abdominal surgeries but she finds one.

Shortly after meet with gyn surgeon at gyn's office and explain my concerns about adhesions - mention I should go to big city hospital and she says shes comfortable with it, shes only a gyn (not ob), and that hysterectomies are her jam.

april 2026 start norithedrone 5m to stop the bleeding but continue to have very heavy bleeding causing to call out sick from work because extreme fatige and faintess.

may 4, 2026 I get a second opinion at the big city hospitals migs department. surgeon is nonchalant. she says to double norithedrone, take lupron or transemic acid or get a AUE and bide my time til menopause - which the average age is 51 but i'm 55 and still going strong and my two sisters went til 57.

Report back to gyn surg who says absolutely not that i 100% need a hysterectomy because the bleeding will just continue when I stop the oral meds.

6/13/26 go on medical leave even before surgery is scheduled because i just cant even go one more step.

surgery scheduled for 7/30

Ferritin levels drop to 68, ask hematologist for iron insusions, she says no - drop to 56 - she says no - so i say im leaving the practice, she says ok she will do infusions THIS time but she thinks its something else. by the time of my first infusion my ferritin is 40.

Norithidrone finally works and no period in July and no bleeding since

7/14 meet with gyn surg for preop and to sign papers and she says oh wait no i can't do that - you have way too many adhesions, it was would be very hard to even get in there even though I could possible go through URQ - previous note from cholycystectomy/hernia repair says there was scar tissue (not that's belly button area not uterus) and I could get in there (davinci robotic surgery) and not be able to finish and ship you to big city hospital anyway. -- and she says she thinks the cause of all my troubles is adenomyosis - although in the weeks following wont allow a hysterosonogram or MRI

go back to hematologist who says CLEARLY anemia is not the cause of my persistent and overwhelming fatigue and refers me to a sleep neurologist so i can get a chronic fatigue syndrome diagnosis before I return to work on 9/12/26 and go out on permanent disability

phosphorus 1.6 (pcp ordered the test)

My iron level drops from 141 to 72 4 days after the last infusion which I know is too early to test, I tell hematologist im concered my phosphorus is 1.1 and ask for a phosphate prescripion and send pictures of the cellulitis the ED diagnosed at the iv site of my last infusion. she says you cant go by iron because that fluctuates wildly (then why does she use it to tell me im not anemic sometimes), defers to pcp for phosphate prescription and doesn't say anything about cellulitis.

the 1.6 phosphorus was 6 days ago and its a sunday. yesterday and today I feel extremely fatigued. I'm assuming it is now lower (?) I messaged my PCP and asked to repeat the phosphorus level tomorrow and prescribe if necessary

Meanwhile my PCP had to go through hoops to get me in with a new hematologist for proper evaluation for a bleeding disorder like von windlerbrands which my hematoolligst refuses to do -- but will do a bone biopsy if that would make me happy even though she says theres nothing in my bloodwork to indicate anything. my appt with new hematologist is in nov

PCP also ordered a pelvic MRI because previous 3 or 4 gynecologists refusted and the plan was to then switch me to an endo/adenomyosis specialist as my new gyn but

My MRI was normal which is probably partially because the bleeding stopped because prior to norithidrone it was enlarged with a thickened lining - but no signs of adomyosis or endometriosis and my organs are not adhered to each other as was told by gyn - she said there was a high chance of nicking bladder or bowels.

So my questions are

(1) what phoshorus level needs a prescription?

(2) did you iron/feretin etc levels even out after bleeding stopped and you felt better? i thought i was feeling better but now worse so just wondering if i am feeling worse from phosphatemia --- or if i don't feel better now with the bleeding stopped, what is the cause of my extreme fatigue -- anemia and fatigue have been the constants in my life, -- have had 3 sleep studies - cpap was optional, tried it - didn't help, tried an oral device - also didn't help.

So tomorrow i will have blood draw for phosphorus with pcp and see what happens

If you made it this far - thank you so much! any advice is most appreciated!!

Hi everyone! I’m hoping to get some insight from people who have been through something similar.
Last year, I had a pelvic ultrasound and was diagnosed with adenomyosis. They also found an ovarian cyst. I had another ultrasound later that year to check whether the cyst had grown, and I was told it was still there but hadn’t grown.
This year, I finally got a family doctor, and because I told him about my history, he ordered another ultrasound. I had the most recent ultrasound while I was on my period (idk if that affects anything).
My doctor has now messaged me saying the ultrasound is “unremarkable.” I’m confused because of my previous adenomyosis diagnosis. Does this mean they no longer see signs of adenomyosis or the cyst? I still have all the same symptoms (long and heavy periods, huge blood clots, cramps, spotting, and knee and back pain.)
I’ve set up an appointment to discuss the results with my doctor, but I’m not sure what I should ask or how to approach it. This whole situation has been really confusing and frustrating. Has anyone experienced something similar?

Hi, after suffering two years from incomplete emptying, trapped gas, and constipation finally got a mild adenomysosis diagnosis. This comes after normal ultrasound, and 2 normal ct scans and a normal endoscopy. In some ways im relieved to know what it is finally but when I met with the endo specialist she couldnt give me any answers. She kept saying I still need a colonscopy and it may or may not be related. I seem to go through the worst gi flares 1 week to 2 weeks before my periods starts so bad to where I need laxatives like miralax or magnesium. I have a decent diet, tried lowfod with no success and try to eat at least 20 grams of fiber a day. Ive tried few hormone therapies suggested and they were horrible and send me in awful flares. Nowafter feeling so miserable for so long I wanna do a hysterectomy but am terrified it wont help and what if the doctor is right and it is not related. Anyone have a similar story or any thoughts? Should I try orlissa before deciding about the hysterectomy? Im done with having kids at 36 but don't wanna undergo a major surgery if its not gonna help. The weird part for me is that my periods are not really painful and sometimes they are heavy but not always, so it is mainly the gi issues causing me hell.

I had excision surgery in February where I was diagnosed with stage II endometriosis, several uterine polyps, and probably adenomyosis. I found out I'm pregnant a few days ago, but have felt a bit more pelvic discomfort than I'd expected. Can others share what early pregnancy felt like after excision surgery? I'm hyper-aware of pelvic pain/sensations, so I'm sure I'm overthinking things, but curious how others felt....

Did the mirena iud help you? I've been trying different bc for 1 year and they made the pain worse. Now I'm on zafrilla which stopped my bleeding which is amazing but I still have the horrible legs pains whenever I walk. And now it's worse I got some bone pain in my pelvis area which again gets triggered whenever I walk. And I can't make more than 6000 steps and then I'm in bed for 2 days bc of the pain. I do have both endo and adeno and tbh I'm kind of tired of all these hormonal treatments which gave me horrible side effects. My question is if you have mirena, did if help you? Did it help with the legs pain?