I don't know if we have a space here to just vent of all the overwhelming things that happens connected to this illness so fell free to use the comments to vent as well. (If it's allowed, this is my first time posting)

I am 30F and I got the diagnosis this year. When I was 16yo I got the diagnosis for PCOS and started birth control (belara) I was living in Brazil at the time. A couple years ago the birth control stopped working well so I stopped taking and my pain got way worse. I went to the doctor and he did normal ultrasound and got me in a low dose/super low dose pil, which didn't work. I was bleeding for 6 months and listening to "the pil needs times to adapt". I stopped again the pill, because I was tired of bleeding all the time and got a new doctor. The new doctor asked for MRI and I got the diagnosis of cyst in both ovaries, adenomyosis and multiple uterine fibroids. And the doctor said I could control only by taking dienogest. From my previous experience I knew it would not work but still gave it a try. I asked her about a hysterectomy, because from my research online it would cure the adenomyosis, and she said I didn't need to do it.... Fast forward to 4months with the new pil, and I am in pain everyday. Specially close to the time to take the pil I get cramps and some times back pain and migraines. Yesterday I went back to get prescription and maybe try other medicine but she said dienogest is the best medicine for adeno/endo in Japan right now. When I told her that I was in pain everyday she said it was normal and that it would maybe go away with more time taking the medication. I also have a lot of spotting, last month during 20days. I scheduled an appointment with the specialist/surgeon next month to understand more my condition and schedule the hysterectomy. I am just extremely frustrated as how can a doctor hear that you are in pain everyday and not do anything to help but say "just keep taking the medicine". By the way I do not want to try the IUD, I did some research and I am not comfortable getting it.

I have been finding it very hard to keep sitting for long hours, i always get more intense cramps during the lectures and i believe that sitting is making my 24/7 pain even worse... our university is kinda bad and broke, we sit on wooden chairs and it's so uncomfortable, sometimes i get the urge to just get out of the lecture but i don't know what to say to the teacher, and sometimes i think maybe putting a pillow underneath me will help make me more comfortable but im scared somebody will comment or my classmates might give me weird looks😭😭😭 I really don't know what to do tho pls help

‐ any advices or tips will be appreciated

Hey I’m on my monthly and I’m just wondering if any of you experienced period pains not just in the lower abdomen but also in the upper as well? Especially if you’re dealing with adenomyosis and/or endometriosis?

I’d love to hear your thoughts. Also the first day of the month is always the worse for period pains…😫😖

Any experiences, did microlut help you? My gyno has prescribed another mini pill (slinda or slynd) to try before I go down the mirena path but I'm not too sure on the safety of drospirenone from my research, where as microlut uses the same progestin as the mirena (levonorgestrel)

I had an abdominal ultrasound and transvaginal ultrasound on Thursday and my doctor rang me in less than 24 hours with the results and told me she’s referring me to gynae. I’ve never been contacted with results. I’ve always had to chase them up so this has freaked me a little.

She said that it looks like I have adenomyosis, polycystic ovaries and the lining of my womb is thicker than normal. My period started today so surely the thicker lining is because of this?

I’m 40 with two children.

Just wondering if anyone can offer advice?

I was hoping that I'd have my hysterectomy and suddenly go back to my 2 years ago waist size! I had a uterus that was about a 5 month pregnancy with adeno and fibroids.

No such luck! The nurse at my 2 wpo, when I asked if I should see it go down over time, was like "ah this is just what happens in your 40s!"

So trying to embrace this new norm. Finally bought new pants (I couldn't fit into my pants for the past few months but wanted to wait post surgery before buying them).

Hello, im 5w pregnant after 2 previous loses before 7 weeks. One being pregnancy of unknown location im September. This pregnancy, I had right side pain for 3 days and freaked out about ectopic so went to Early Pregnancy Unit. My scan showed what could be a small gestational sac (no yolk, no heartbeat of course) measuring 4 weeks 6 days and my HCG was 960. Im back in for another scan in 10 days...

Heres issue - my last loss, i had a private scan at 6w 1 day and they found what they thought was a 3mm x 4mm gestational sack ...it even said "gestational sack?" On the image. Fast forward 5 days, from that private scan had right side pain and bleeding, i go to the EPU, have internal exams / 2 sets of bloods done as they expected ectopic. At the second (hospital, not private) scan the doctor tell me that its not a gestational sac, its an area Adenomyosis (i had miscarried in between the 2 scans)

So my issue...

Im freaking out that with this current pregnancy, the 4 week 6 day measuring sac they are seeing, is again just the area Adenomyosis mistaken for gestational sac. Im trying so hard not to get my hopes up. く Has anyone else had this situation or similar with their Adenomyosis. I have one focal or cystic area of Adenomyosis.

Could it be mistaken or was the first private ultrasound i had just informed me incorrectly!

Any help from this community would be so appreciated

Hi all, 35 year old here with both endometriosis & adenomyosis and a UAE is my last call before going ahead with a hysterectomy. I can’t have hormonal treatments due to a blood clotting disorder so I am pretty anxious about the procedure because I most frequently hear how painful it is and I’m out of other options. I’m doing a little DIY exposure therapy here because I find it works best for me to hear what the absolute worst I can expect is, as macabre as that sounds.

My main concerns are:

Pain - I see so many people saying it’s extremely painful but where exactly? The groin incision, the uterus etc or elsewhere, and what kind of pain is it?

Results - My dr says it helps roughly 5 out of 10 people for pain, which is my main problem. How soon did you notice if it helped and how long did you benefit from it?

Are there any specific symptoms it has since made better (or worse?)

Were you sedated for the procedure and if so how aware were you of what was going on?

Thanks in advance, I welcome hearing everyone’s experience whether good or bad

I recently went to the doctor due to having prolonged spotting between periods, heavy periods, period pain and longer than normal periods. I was sent to get a trans vagina ultrasound. I was told :

1. Heterogeneous appearance to the myometrium without discrete fibroids. Adenomyosis is of differential consideration. MRI may be considered for further evaluation as clinically indicated. 2. No discrete polyps or internal vascularity the endometrium. 3. Normal appearance to the ovaries for age.

I am now scheduled to have an MRI on the 22nd, and to see a gynecologist there after. PCP put me back on birth control and recommended NSAIDS. Is the MRI necessary or can I rely on the results of the ultrasound and the radiologist considering adenomyosis as a diagnosis ? What will an MRI do for me if that is the diagnosis anyways, is that a waste of money? Any advice is welcomed. Thank you!

Hi everyone, I was told I have "mild" adenomyosis after an ultrasound back on Summer. My period flow is moderate to light, and slightly painful (they've always been). I did notice the feeling of random stabbing in my uterus throughout my luteal phase... It makes me wonder if it's the tissue kinda penetrating my myometrium. Does anyone feel that too?

Also, my naturopath suggested me to start taking NAC. I am on my 4th day of taking it, and I started to feel discomfort specifically in my uterus? Like a heavy feel too it. I only see on the internet how NAC is supposed to be helpful with fibroids and endometriosis... Nothing related to possibly making it worse?! Has anyone tried NAC and it made your symptoms worse?

Please help me decide! I’m scheduled for a laparoscopic hysterectomy in December for adenomyosis, endometriosis and heavy periods. I was so thankful to have insurance approve this procedure but now that it’s approaching I’m not sure what to do.

I have a 3 year old and 1 year old so I’m worried about the post-op recovery for all of us. My husband will take 4 weeks off but that’s really all the help I can plan on receiving.

My periods take me out. I go through a super tampon every 2 hours for the first 3 days and then my flow becomes more normal for another 4 days. I have a lot of adeno pain and my iron levels are lower than normal. I’m so torn. The dr is confident that she will be able to remove my uterus laparoscopically despite having 2 c sections.

Please help me decide!

Received my mri results and I’m worried about what comes next, I think I’m worried about operations etc and how I will recover , but it has to be better than constant pain in my lower back that feels like contractions and all in my pelvis and legs, also low iron, long periods! In and out of the toilet needing a wee and constant pressure I feel like this is literally sucking the life out of me, Has anyone else had this.

Hi All, I hopeing someone maybe able to suggest what the next steps might be with the above. My periods are so heavy and pain horrendous. I have to work home from work and can't sleep during. Any info would be great. Thank you

Opinions here; Does stress make your pain, or any symptoms, worse? Or is it same old same old for you Let me know

Hi all! I’m 22 and just been diagnosed with focal adenomyosis. While other symptoms are painful they’re manageable, but the worst pain for me is in sex. It’s super frustrating because this is the first healthy sexual relationship I’ve been in and it’s typical that something had to ruin it! The pain is some of the worst pain I’ve experienced in my life and hurts in every position, and even hurts when I go for pelvic exams and my transvaginal ultrasound - does anyone have any advice on what helped them with sexual pain?

been in and out of the er for what's felt like cyst-related pain and with each ultrasound my uterus seems to have gotten bigger and bigger. today i happened to have had a blood pregnancy test which shows that my hcg is over 600. there's no way i'm pregnant... they sent me for an ultrasound and these are some of the findings. my mind has jumped to cancer and im so scared i dont want to leave behind my baby girl

Question possible small gestational sac within the endometrial canal measuring 0.6 cm. However, no fetal pole visualized, possibly due to early gestational age. Pseudo gestational sac versus ectopic pregnancy or failing/failed pregnancy not excluded in this patient with beta HCG level of 798. Recommend follow-up pelvic ultrasound and potentially correlation with serial serum beta hCG level

Mean gestational sac diameter: Small fluid density lesion within the endometrial canal measuring 0.6 cm and possibly representing gestational sac is visualized. Mild homogeneous thickening of the endometrial stripe, which measures up to 2.5 cm in thickness.

the thickness of my lining via my last ultrasound (on the 2nd) was 12mm... its increased and i'm showing no signs of a period

I have been diagnosed with both adenomyosis and endo. I just had my endometriosis excision today. My surgeon told me afterward that they did remove quite a bit of endo, but none by my bladder. My primary symptoms are bladder related, and he could see that my uterus was really inflamed. He thinks that could be what’s causing my bladder pain, but he wants me to fully recover from my excision first and then discuss other options.

Has anyone had a hysterectomy done vaginally? Particularly one where the cervix is retained? I’ve heard the vaginal approach is much less traumatic, but I’m wondering if it’s possible for someone who has never had kids.

Hey guys. So I started having more severe symptoms a few months ago, but in the last three months it feels like there's a rapid worsening of them. For the last two years I've been on the pill, and it helped extremely on the first year. However this year I started having dyspareunia, my periods became painful again, and they started being irregular, stopping mid cycle and returning a few days later etc. I got diagnosed about three or four months ago via hysteroscopy completely randomly. My symptoms were heaviness and pain in the pelvis, constant urge to urinate, and for a long time I thought it was a kidney stone. It was by complete luck that my new gyno saw something abnormal on my ultrasound and had me get it confirmed. However, ever since the hysteroscopy my symptoms have become severely worse. I'm still on the pill for context, and my periods are now irregular, not even once on time, my bleeding is so severe I have to change around every hour most of the days, and it has sometimes lasted less than four days, and others more than ten. My dyspareunia also became so bad that I felt like crying. During my last period my pain became so bad that one day I was out, and was unable to get up to return home. I had to walk hunched over as I couldn't even stand. Every night I wake up more than three times because of pain or to use the bathroom. I'm extremely miserable, and I know I need to find someone who specialises in this condition, but I'm just exhausted. How is it possible to be on the first line of treatment and still be getting worse? My doctor said to just keep monitoring it every six months but I can't just wait like this when I can tell the situation is escalating. I'm just terrified.

So in the wake of the election, are those of us based in the US worried that bans on birth control might result in no longer being able to get IUDs, the first line treatment for adenomyosis?

What’s the actual plan on the republican’s part regarding those of us who need an IUD for medical reasons? Does anybody know??

Are there also plans to make hysterectomies less available? (Which are already financially unavailable for most of us, but…)

I am extremely worried for a lot of big picture social reasons, but I don’t know how worried I should be about my physical health.

Hi everyone, I spoke with an endo specialist briefly and he viewed my pelvic MRI images and he said my uterus was asymmetrical which could possibly indicate adenomyosis. He also said my ovaries look quite large and possibly polycystic. I have awful stabbing pain in my ovaries, hips, uterus, bladder, and rectum. My pain is 24/7 and gets 1000x worse on my period, so bad I end up in the er. Can adeno cause these symptoms too? He didn’t see endo in my mri, but I know a lap is needed to be 100% sure. The issue is they don’t want to do the lap yet and want me to try visanne. I’m just wondering if adeno can cause these sensations as well and not just endo?

hi i’m about to turn 26, am in my final year of grad school and got engaged two months ago. i got diagnosed with mild thru ultrasound last month after having really painful cramping for years. I’ve had some form of hormonal IUD for basically almost a decade. In addition to adenomyosis, I have hashimoto’s thyroiditis, which also impacts fertility. I have always wanted to have kids and my partner and I had always just assumed we’d go for IUI/IVF in early thirties if we had issues. We’re in the US, and with the election, I’m scared those things won’t be available to us, so we are feeling significant more pressure to get rolling on that. i hate that this whole situation is changing my plans for the next few years of my life. my discipline is also going to be impact big time by the election so the agencies I was most interested in pursuing will likely be way harder to get a position at than before.

anywho, my question is mostly directed at folks who were diagnosed before pregnancy. How easy was it to conceive? was your pregnancy high risk? what was your experience?

Hello!

Completely new to posting. I am 28 and just got diagnosed with adenomyosis 2 months ago after years of pure hell. Since I am high stroke risk, I was taken off of estrogen bc pills, which over the course of a year completely ruined my life.

My pelvis was swollen after minor activity, my periods lasted for about 2 weeks and came very irregularly, I stopped being able to have sex due to extremely painful cramps after orgasm, I couldn’t even run or exercise for months.

I switched to a new gyno who put me on the depo provera shot to try. So far I haven’t gotten any of the horror story side effects i read about (knock on wood). My boyfriend has been very supportive through all of this and I would love to get the intimacy aspect of our relationship back but I am anxious that the pain will still be there if we try. Does anyone have any experiences with painful sex and if the depo shots worked? Or any advice at all?

Thank you!

Hey was hoping to get some opinions on this. I have a lot of symptoms that make me think I could have adeno or endo. One is that I bleed (not a ton) after sex, and even if I’m using a dilator. I brought this up to my gyno and she said that’s “normal” with an IUD (I’ve had it in for years) but everywhere I look online that’s not listed as a side effect. What do you all think?

Has anyone had a pudendal nerve block for pelvic pain?

I have endometriosis with suspected adeno but it's not certain to be adeno since my uterus doesn't make it completely obvious

I'm scheduled for an (laparascopic) Adenomyomectomy tomorrow. I was thinking my surgery and recovery will he akin to my previous 5 laparoscopies i got for endometriosis. However today I spoke to my anethetist and he mentioned pushing me into ICU straight after.

Is he being overly cautious or am I underestimating this?

Hi everyone! I was diagnosed with moderate ADHD back in January 2022, and I was diagnosed with adenomyosis last month as well as PCOS and PMDD. My gyno recommended I get an IUD (Mirena specifically) to help with the heavy bleeding and to basically stop my period because she said “the fewer periods I get, the better.” So I’m waiting to make the appointment as they order the IUD.

I’ve been reading Reddit threads about people’s experiences with the Mirena who also have adenomyosis, and someone who has ADHD and adenomyosis said that the Mirena IUD made their ADHD symptoms worse because of the progesterone. I had no idea that progesterone could have a negative impact on ADHD. I’m on medication for it (Azstarys specifically), but this still worries me.

Is there anyone here with ADHD who has gotten a Mirena IUD/any birth control that’s progesterone only? What have been your experiences? Did your ADHD symptoms get worse?

For the whole of October and the first few days of November I was heavily bleeding. Yesterday and today (TMI warning) are the first two consecutive days since September where I have wiped and there's been no red or pink 🎉 Now to stress about when my next period will be and how long that will last 🙃😂😭

After taking norithendrone last fall to delay my period for a trip I literally never pooped normally again. After many diagnoses, pelvic floor dysfunction, rectocele, redundant colon- I had a rectopexy with bio mesh to fix the rectocele and prevent the uterus from Falling backwards into the bowel. My Uterus as grown in size and I’ve had some Mixed ultrasound and mri results sometimes saying heterogenous etc. Junctional zone slightly thickened posteriorly. I had polyps removed recently. I cannot shit to save my life without laxatives. It’s like- the stool doesn’t even make it to the rectum. Stools are always flat or thin- always broken up and small. With laxatives stool only gets to the rectum in small amounts there go on all day. Even getting gas down to the rectum is a challenge. I can feel it up higher and have to push it down. The bloating and pressure is all In the area of the uterus. My colonoscopy was normal and my colon looks totally fine on my CT. I notice these symptoms are worse in the first half of my cycle when estrogen levels are higher. I get numbness in my low back and backs of my buttocks and thighs. My periods are usually so heavy I have to take tranexamic acid otherwise I’m soaking through an overnight pad or ultra tampon in 1.5 hrs. I have experienced worsening urinary frequency. I feel like I’m going nuts at this point. The constipation is out of control and there’s no apparent GI or colorectal reason for it. I’m beginning to think it’s adenomyosis. My uterus has grown in size in the last year. I want to say like a cm or Two. I’m a petite woman and there’s not a whole lot of room in my pelvis. How do I get a Dr to hear me about this? Is it crazy to think it could be this??

I had my ultrasound sometime this year and I have regular periods with no heavy bleeding or cramping. But the ultrasound result says I have adenomyosis.

Anyone has the same issue and what did you do about it? Thank you.