My mother was just diagnosed with breast cancer.ER+ & Pr+, 9:00 left breast. She has had a hysterectomy after an ablation years prior. As a result she was on hormones.

She cannot remember if she had adenomyosis. I certainly do have it and have had treatment in the past. My question is does adenomyosis increase estrogen or progesterone? I now feel I have to be concerned about my risk. I have a PASH elision confirmed via biopsy and what looks like a benign lump in my right breast currently (not biopsied).

Question for Australians - is high intensity focused ultrasound (HIFU) treatment available here?

(new here 🙂)

Had Adenomyosis+Fibroids indicated on ultrasound, my first appointment with specialist Gyno is next week, and I want to go in with some knowledge. I’ve read a few articles about it, but can’t find much about it happening in Australia.

I just started taking progestin for my adenomyosis. This is my first period while on the med. I clot really bad, i have to push out my clots a lot (normally while not on the med) I haven't bled much while on the med but my cramps are BAD. I almost feel like the clots I would normally push out to relieve the pressure are now just building up with nowhere to go. Anyone else feel like this? Am I crazy?

Dear Endo Warriors, my name is Anjali Joshi, and I’m a PhD scholar at the Central University of South Bihar, India, specializing in Journalism and Mass Communication. I am conducting an important study titled “Women with Dyspareunia and Communication Challenges”, and I would deeply appreciate your help in contributing to this research. This study focuses on the emotional, relational, and social dynamics surrounding endometriosis-induced dyspareunia, a condition that affects many women, yet remains largely misunderstood and stigmatized. Specifically, I am investigating how women with endometriosis experience painful intercourse (dyspareunia) and how they navigate the disclosure or concealment of their condition to their partners.

Why Your Participation Matters:

• Impact on Relationships: Many women with endometriosis face the challenge of sharing their condition with partners due to fear of judgment, disbelief, or lack of understanding. This study aims to understand the real motivations behind disclosure or non-disclosure and its effects on relationship dynamics, emotional health, and overall well-being.
• Creating a Safe Space for Your Story: Through confidential interviews, I’m seeking to listen to your experiences—whether you’ve shared your struggles or kept them hidden. Your story will play a vital role in helping to better understand the barriers to communication and the consequences of keeping silent or opening up.
• Empowering Future Change: The findings of this study will contribute to improving the support systems for women living with endometriosis, offering insights on how healthcare providers and support groups can foster better communication, empathy, and understanding between partners.

What to Expect:

• Your participation is entirely voluntary and confidential.
• You can choose to participate in a conversational interview, either through written, audio, or video formats, depending on what feels most comfortable for you.
• The information you share will be used to promote better understanding and support for women with endometriosis, particularly regarding communication challenges with partners.

If you are interested or have any questions, please feel free to reach out to me via direct message or comment below. Your experiences are invaluable, and your voice is crucial to making a difference in how endometriosis and its emotional challenges are understood and addressed. Thank you for your time and willingness to contribute to this important research. Together, we can work towards better awareness and care for all women with endometriosis. With empathy and gratitude,
Anjali Joshi
PhD Scholar, Central University of South Bihar

https://preview.redd.it/5m2ilwvmi24e1.jpg?width=940&format=pjpg&auto=webp&s=1b94068e9b6809aef52fd4cfd896e81e780f6627

Hi everyone, I just got diagnosed with adenomyosis. I’ve been having heavy periods since I was 8 years old up until now at 26 years old. The diagnosis has been really tearing my world apart because I’ve been suffering from other severe health problems that have debilitated my life the last few years which I’ve been seeking help from. Having an incurable uterine disease on top of this is just causing me to feel worse and I’d be better off dead. The fact that the only ‘cure’ for this is to remove the uterus and not have children, or to take birth control sucks. I have tried BC for years before my diagnosis and I only felt worse on them and caused me other health issues. My body doesn’t react well to medication. My periods are slightly better since I did acupuncture before but all these alternate therapies are expensive and draining. I’m so tired of life. I’ve been reading all the comments from people on here about any success stories of alternate treatment and it doesn’t seem there is any. There’s not enough research on women’s health either so there’s no hope. I don’t want live any more.

Hey guys, I was just wondering if anyone else has ever had this issue. I started birth control pills a little over two years ago and for about a year it was very helpful. My cycle was regular, pain minimal, and no surprises. Lately my cycle has just been all over the place, sometimes late, sometimes early, sometimes lasting as long as two weeks and sometimes as little as 3-4 days. Also pain has become permanent and becomes debilitating during menstruation. I was told birth control pills were the first choice of treatment, but they seem to just not be working anymore? Is this something that just happens?

Okay, so, I don’t have a diagnosis of adenomyosis or anything at this point. I was recently bleeding for approx 40 days. It wouldn’t stop when I took tranexamic acid. I finally went on birth control for two weeks (it was amazing to have two weeks of no bleeding😭) and as soon as I stopped the birth control (a couple days ago), the bleeding started again. It hasn’t been too heavy so far, thankfully. I had a transvaginal ultrasound recently, the results are “normal.” I am seeing a gyno soon, thankfully, but… how much should I push for more testing? Do I ask for an MRI? Does adeno need surgery to be diagnosed? I feel like I’d like to know/understand what’s happening in my body to cause this heavy and prolonged bleeding, and I’m anticipating the gynaecologist will just tell me to take birth control without figuring out what’s going on. Also, at my appointment, the gyno said that they will do a pelvic exam. I’m hesitant because of past trauma/pain, but is there a good reason to allow it? Will they be able to tell anything from it? Thank you in advance 💗

We will be gearing up to restart IVF in a few months so I wanna make sure I’m doing the best for myself now so I can hopefully have better chances with our next FET.

I Just had a miscarriage with our last embryos and I’m heartbroken 😔

I got a diagnosis earlier this year of Adenomyosis when my Dr was helping me figure out why I have debilitating pain on my period. (Thought it was normal, apparently not) Same time, we began working on figuring out why I'm constantly fatigued.(Something I also thought was normal until one of my roommates pointed it out) I have a little bit of energy after waking, from around 8-12 but then I hit this wall and feel just bone deep exhaustion. I can manage not to sleep, but I feel like a toddler fighting a nap unless I down some caffeine or sugar. Even that feels fleeting.

On my period I'm knock down dead tired. I will sleep for 12 hours straight, wake up to eat and change my pads, and then go right back to sleep for another 8 hours.

I've had my blood work done and have no significant vitamin deficiencies, she still said it was fine for me to take a multivitamin w extra Iron if I was concerned about anemia so I do take that. I recently had a sleep study to test for narcolepsy and the results came back normal and it's got me feeling pretty devastated. I had gotten excited about the idea of the exhaustion possibly being treatable, because I can't imagine what it would be like to live with a normal amount of energy.

My roommate was reading a book that had info about adenomyosis in it that said it can cause fatigue. Is this just from the adenomyosis?

I had a TVS in august showed Adeno. Had an MRI last week, says no Adeno. Feels like square one. In pain & no answers. Anyone else? Why would the results be conflicting.. MRI should provide more answers, surely?

I’m gonna lose my mind

I was just told I have suspected adenomyosis since my last uterine surgery in September, I suspect this came as a complication from that surgery since my period has changed significantly since. I have also been examined more in the past year than most due to ashermans, with four hysteroscopies and this has never been pointed out to me until last week when I had a standard ultrasound with a new doctor.

Due to miscarriages and ashermans I have not had a normal cycle in more than a year, most in between surgeries and pregnancies have only been 2-3 days. Now when I have finally been cleared of ashermans but I have this new suspected diagnosis I’m not sure what a normal should look like anymore.

I’m aware many in this group suffers a great deal from this condition and I’m not sure what to expect for my experience with this in the future. If anyone wants to share:

• how long is your period and what is your flow like? Do you usually have spotting for a few days before the flow actually starts?
• any positive stories about ability to conceive and carry a pregnancy to term? We’re trying for our first and i need hope
• does this condition get progressively worse or does it kind of stay the same way? I think I’m lucky that I was unaware since I know many suffers a lot with this condition, should I prepare for this to become worse as time passes? Any tips on how manage to keep symptoms to a minimum? I’ve read about diets but do they actually make a difference?

Sorry for a long post, just feeling a little discouraged and hopeless with constant issues related to my uterus and all I want is just to build a family..

I’m feeling so confused about options for our frozen embryo transfer. I have adeno, and the consultant says it’s up to us whether I do 1) a standard medicated cycle, or 2) a medicated cycle with longer down regulation or 3) a natural cycle.

I felt terrible when down regulating for 3 weeks before egg collection, so I’m worried about that aspect. She also said we would use Bruserelin rather than Lupron, but I’ve only heard of Lupron depot being recommended for longer down regulation. I’m in the UK so not sure if that affects it.

Can anyone offer any advice please? Did you have success with any of these options with adenomyosis? Thank you.

Had a scan 3 years ago and was told I had adenomyosis, went to gynaecology appointment and he totally dismissed my symptoms and said that most women who have had a pregnancy have this condition. Fast forward 3 years and i have just had another scan. The radiographer said to me you already have a diagnosis of adenomyosis. I replied yeah but no one will acknowledge the diagnosis or help me. 4 weeks ago I was put on progesterone only pill as I had a mini stroke a few years back. This made the bleeding worse. To the point I couldn't leave the house. I really don't know where to go from here. I won't be seen by gynaecology for atleast 3 months. How do I get the help? I need every aspect of my life is effected.

Hi, I have severe pain after waking up in the morning I also have pain after a nap. Anyone else experiences the same? Someone can explain why it’s after sleeping so bad? I get pain occasionally during the day when I move or work out. Or random. I take hormones wo a break and have no period. I have pain almost every day.

Those with adeno and anxiety. How do you distinguish some of the symptoms common to the 2 conditions?

I just had my anxiety meds upped, a coil inserted in the summer and I don't know what is what.

Thanks in advance

Does anyone else here have the feeling that their uterus is just constantly in the way? Like a big bulky mass that gets in the way of bending over to tie my shoes, the bloating gets in the way of my pants etc. I was told by a specialist about 7 years ago that based on imaging and an exploratory surgery that it's likely adeno, but they would not know for sure until the day I decide to get a hysterectomy and it can go to pathology. I'm holding off on that until I can start my family, if I can get pregnant. But man on top of the excruciating pain, I just feel like my uterus gets in the way. Maybe it's a fibroid that's grown since then? Idk. Anyone else share the same experience?

tility. Fast forward to January, and I get an IUD put in. Did absolutely nothing for me, unless you count being bothered by the string hanging from it. Got a Depo provera shot in- I believe- March, and it worked! For 3 weeks. For three weeks I had no pain or bleeding, but it was supposed to last 3 months. So, I did another depo shot. Did not work whatsoever. The pain began to grow worse and worse, and has been progressing. I got my IUD removed in August, because it helped me with nothing. 3 weeks ago I got a Lupron shot, and by next week it should be working. If not, I’m going to be extremely pissed. My red blood cell count has gone down because of the bleeding and I experience fatigue every day, my sleep just about every other day is interrupted by pain that just absolutely gags me with screams and cries for help. In August I decided to quit going to high school in person. I suffered through the end of my sophomore year using the bathroom across campus and getting hot flashes in the Arizona summer, but I couldn’t do my entire junior year like this, especially not when it’s getting worse. So.. I started online school. That definitely helped take away some stress, but the pain is worse than ever now. It paralyzes me, rips me apart. I sweat and claw at anything I can get to during my cramps. I cry and groan and sob. I beg for anything or anybody who’s listening to make it stop. I hit my bed or my chair. I shake my hands and legs. There is nothing I want more than a hysterectomy. This pain is absolutely unbearable and I wish I could refuse even one more second of this. I love my life and everything that it has to offer.. but I’d sooner die than live with this until I go into menopause. My second gyno has been working for months trying to get approval for a uterine removal for me at several hospitals. Me and my mom will even travel out of state, just like we did for another surgery.

I’m not on my monthly’s or done anything to trigger pain but I’m cramping really bad!! Does any one else experience this? What do I do? Please help, it’s absolutely deliberating!!

Hi! I’ve been diagnosed with ‘mild’ adenomyosis, I had an internal ultrasound during the testing phase of seeing if I was suitable to freeze my eggs (I’m 32 & single). I’ve been told I can go on the ‘progesterone only mini pill, or low dose combined pill which you take continuously, having a break every 3 months only’. I’m really unsure what next steps to take, turns out I have lots of follicles and a high ovarian reserve, I want children in the future, but I’m not in a relationship at the moment so it could be years away. But knowing this could progress and affect whether or not I can carry is unnerving. I also have Inflammatory Bowel Disease (Ulcerative Colitis), and take daily meds for that, so the thought of adding the contraceptive pill to the mix just makes me feel deflated. I’ve also seen it can raise your risk of clots, and having UC already raises mine.

Does anyone have any advice for me, or success stories of being able to carry even with moderate or severe adenomyosis? Does the pill really help if, so which type are you on?

Would really appreciate any advice.

I've just had a diagnosis of mild adenomyosis. For background, doctor has said the muscle layer of the uterus was thicker in some areas, with some cysts, and I also have some adhesions, like my right ovary is fixed to the pelvic wall. They said this doesn't completely rule out endo.

Does anyone recommend any particular treatment and have advice for what I should do next? My next appointment is in May, which seems like forever away.

These are the options they've given me:

1- Non-hormonal treatments like tranexamic acid or mefenamic acid.

2- Hormonal options such as birth control pills (COC), progestin-only pills (POP), the Mirena IUD, or implants.

3- Diagnostic laparoscopy, which might include removing adhesions or treating any endometriosis found.

Would really appreciate any advice, thank you sm.

I’ve been on birth control for YEARS and it used to help my painful periods that i used to have as a teenager, and i’m 22 now. but now my birth control definitely doesn’t help any cramping or discomfort. My periods got bad about a year and a half ago, and i had concerning pain, and got a transvaginal ultrasound and that’s how i found out I had adeno. And ever since, my periods have gotten even worse. Is adeno supposed to be rapidly worse? i skip my periods every month now because i can hardly function from pain. i feel like i have a bowling ball in my pelvis pulling it down, the cramps feel like i have lava in my lower stomach, i get insane hip pain, pain that shoots like electricity from my hips to my knees, and sometimes a very upset stomach due to hot flashes and pain. when do i consider if it’s even worth skipping all my periods and keeping a uterus? im only 22 with no kids and am unsure of having kids. I get period like cramps almost everyday at some point thru the day anyways even not on my period. :/

I have endometriosis as well as likely adeno and we don't know exact cause of pain but insurance blocks everything, so I feel backed in a corner for a hysterectomy and I don't want it. I'd rather just die. I hate that my options are dictated by strangers at insurance. This won't even guarantee that pain goes away. It will guarantee that I never have my own baby.

Fertility clinic told me after a ten minute phone call that I have adenomyosis and will likely need surgery. The info I gave them:

• We've been TTC for 7 months
• I spot for three days before my period
• I have three uterine fibroids under 2 cm in the top muscle of my uterus
• I went on BC at 17 because I was having really long periods

The clinic has a 3.7 star rating and for some reason my red flags went up.

The research i'm reading says fibroids do not mean you necissarily have adenomyosis.

I have regular periods (apart from the spotting)

3 days spotting, 2 heavy days (but not crazy), 3 days super light. but always on time and for 5 days. I don't have cramps to the point where i have to take medication. I literally have never heard of Adenomyosis and i wouldn't have even asked about it if I wasn't in the rabbit hole of TTC.

I had an ultrasound last week just to look for cysts/fallopian blockage/etc which is how I found the fibroids. This is what it said:

The uterus is retroflexed. The uterine echotexture is fairly uniform. The uterus measures 9.5 x 5.1 cm in longitudinal and AP diameters. The endometrium is normal measuring 9 mm. There are at least 3 fibroids in the myometrium. This includes a hypoechoic fibroid involving the anterior aspect of the uterine fundus measuring 2.0 x 1.5 and 1.4 cm. There is a 1.8 x 1.6 x 1.6 cm fibroid involving the posterior aspect of the fundus. An additional fibroid involves the anterior fundal region measuring 2.0 x 1.8 x 1.4 cm.

Are they revolutionary or do I have some kind of endo? Am I infertile? Where can I get answers?

I was wondering if anyone has the same issue. I was diagnosed with adenomyosis today because of immense pain during my period. She did the ultrasound and found tissue at my uterus and vagina.

I can’t have sex as well, i can’t even put a tampon in because of immense pain: My doctor was puzzled because she believes that this is caused by something else. I don’t know much about adenomyosis, it’s really new to me so I was wondering if anybody here can’t have sex as well. Can this be caused by adenomyosis or is this more likely something else?

Hi, I just want to say thank you in advance. This post is a little bit long. I recently got diagnosed with adenomyosis. The symptoms I have is twitching in my pelvic area, similar to when your eye is twitching. I went to the gyno Oct 2023 and an ultrasound was ordered, which everything was normal. Here I am a year later, still twitching in pelvic area which its intermittent. My gyno put in another ultrasound 2 weeks ago. The ultrasound states suggestive of a adenomyosis. Down below I’ve attached my ultrasound results from Oct 2023 and Nov 2024. I honestly don’t what do think, except from what I read online. How did this come within a year. What’s the next step and does further test need to be done? D I worry about having kids/ infertility issues because I’m only 26 years old. Does this get worse over time? Any recommendations on what to do?

Backstory, I’m 26 yrs old, no children, regular menstrual cycle. I was originally on birth control since I was 18 years old. I recently got off of birth control Jan 2024, which was my choice I just didn’t feel the need to take it anymore

Oct 2023 ultrasound:

Impression Axial uterus measuring 7.0 × 3.4 × 4.2 cm The endometrium measures 5.6 mm Right Ovary: Size 22 mm x 15 mm x 17 mm Left Ovary: Size 30 mm x 20 mm x 12 mm Recommendations Follow up as clinically indicated. Menstrual History LMP on 10/18/2023. patient is currently bleeding, period started yesterday Method Transabdominal, transvaginal, 3D ultrasound examination, Color Doppler examination Uterus Uterus: Visualized Uterus position: axial Description of uterine malformations: normally shaped Myometrium: heterogeneous Endometrium: normal Uterus long 70 mm Uterus ap 34 mm Uterus tr 42 mm Uterus Vol 52.6 cm3 Endometrial thickness, total 5.6 mm Cul de Sac Visualized. no free fluid visualized

Nov 2024:

Impression Anteverted uterus seen that measures 74 mm x 34 mm x 47 mm. The myometrium is heterogeneous but no obvious fibroids are observed. This finding is suggestive of adenomyosis. Right Ovary: Size 25 mm x 16 mm x 16 mm Left Ovary: Size 31 mm x 20 mm x 19 mm No free fluid is noted

Recommendations Follow up as clinically indicated. Menstrual History LMP on 11/1/2024 Method Transabdominal, transvaginal, 3D ultrasound examination, Color Doppler examination Uterus Uterus: Visualized Uterus position: anteverted Description of uterine malformations: none Myometrium: heterogeneous Uterus length 74 mm Uterus width 47 mm Uterus height 34 mm Uterus Vol 61.1 cm3 Endometrial thickness, total 5.7 mm Cul de Sac Visualized. Adjacent to right ovary. free fluid visualized

Hello, I have adenomyosis and bowel problems. I have a rising body temperature every day between 37.5 and 38°C. It's not a fever, but it's still elevated. My urine is also not clear. There is blood and protein in my urine, but no bacteria or nitrite. I have already had antibiotics, but according to the doctor, it’s not a bladder infection. Has anyone experienced something like this? I wonder if it could be related to adenomyosis.

I (35 almost 36F) just had an MRI for endometriosis surgery (endometriomas found) and it also found several small fibroids.

One thing that stood out to me on the reports was my stripe is 1.6cm. This was taken on cycle day 24 of a usual 25 day cycle but I started birth control two weeks prior and not sure I ovulated last cycle. My trans abdominal ultrasound one week prior said max thickness was 11.4cm and it also didn’t find any fibroids.

Could a 1.6cm be indicitive of adenomyosis? That’s too thick right? I’ve had light bleeding every single day since my last period started (10/28). Or is this likely a sign of something like endometrial cancer?

Hi, I have finally lost all the weight that I needed and I have been considering having a tummy tuck. After my twins pregnancy and C-section I was left with a hanging belly that never went away and then life happened and I put on so many weight. I have lost 30kg, in my 40s so yes, my loose skin is horrible and now I’m in a financial position that I can pay for it.

Problem is I just been told that I need a laparoscopy potentially a hysterectomy for my adenomiosys that is getting worse and not improving with Mirena.

My question is, would a tummy tuck be feasible after a laparoscopy? How long I need to wait? I understand that health comes before body image. But this hanging belly has also been affecting my mental health, and it was my ‘reward’ for shedding all this weight and maintaining for at least a year…

Hi,

A year ago i had Adeno and Endo taken out from various places. However surgeon said uterus is completely riddled with Adeno and it needs to come out.

I haven't done anything about this yet.

Main reason is cost, i already spent near 8 grand and cant afford to do much else about it. (Unemployed plus cost of living)

Other issue is side effects from uterus being removed. I didn't discuss yet with surgeon, but have heard theres side effect? Early menopause etc, you need hrt?

Dont really know what to do anymore, so ive kinda gone into "try to not think about it" mode, but thats hard at those times of month when the pain is bad i cant do anything.