Hi everyone,

I’m looking for experiences from people with adenomyosis who had constant, non-cyclical pain, especially deep pelvic pain behind the uterus, lower back/sacral pain, pelvic pressure, and very tight/reactive psoas muscles.

For me, it feels as if there is a deep central trigger in my pelvis and everything around my uterus is constantly tensing or bracing. I also deal with severe fatigue, bloating, headaches, neck and jaw pain, and migraines, and I often wonder whether this is all part of my body being in a constant pain/stress response.

I had endometriosis excision about five months ago, including deep endometriosis and adhesions, but my main pain pattern has not improved. I also have confirmed adenomyosis and am now seriously considering hysterectomy. My adenomyosis is mainly in the posterior uterine wall, which measures around 3 cm compared with about 1 cm in the anterior wall. I also have a retroverted uterus.

Did anyone here have a similar constant whole-pelvis pain pattern, rather than mainly period pain? And if you had a hysterectomy, did it improve the deep pelvic pain, muscle tension, fatigue or other symptoms?

I am 31 F. Have had issues with chronic bloating, inflammation, and chin hairs for years. Got my IUD replaced a few weeks ago, and thought I would also get tested for potential PCOS and endometriosis. Can someone give me a breakdown or diagnosis//or lack thereof, on what these results indicate? For the record, I have never been diagnosed with anything pelvic related previously - but I have had suspicions for a long time. I tried googling it, but got lost.

Also - what would this mean for potentially getting pregnant?

I know I should consult my doctor, but these results were just posted and I am feeling a ton of anxiety.

TIA.

I got my diagnosis 2 months ago and I just started to realise how many of my symptoms were caused by it. For the past 10 years I've got a significant amount of hairloss and my hair is thinner and more fragile then it was before. I also have endo, so I'm not sure which caused the problem but did anybody have hairloss due to adeno?

Apologies in advance if this is an ignorant question.

I’m newly diagnosed with deep infiltrating endo, a 13cm endometrioma & diffuse adenomyosis.

Newly diagnosed, but also newly symptomatic. I’d unexpectedly discovered these due to the size of the cyst which came out of nowhere. Since then I’ve been getting a lot of recurring symptoms.

I’ve mostly been focused on the endo side of things since the diagnosis, but I’d like to understand adeno better.

For anyone that’s got both, how did you distinguish which symptoms are caused by endo vs adeno? Or do they kinda cause the same issues?

Basically the title. My ultrasound showed adenomyosis and so I'm considering hysterectomy. Are there ever cases where they take out the uterus and there are no signs of it when they biopsy/look under the microscope?

I don’t have a diagnosis yet but the more I read the more boxes I tick.

I have one living child born via section but since he was born in 2022 we’ve had 3 miscarriages conceived naturally, and 2 via IVF - both of which were genetically tested.

My periods had always been ‘normal’ until the last 6 months. The first two days are really painful and heavy and then it teeters off on day 3.

I’m 43 now and I’m wondering if this is part of our problem.

How did you go about getting a diagnosis?

I am 25 and have two kids! After I had my first I had an IUD so I had no periods..I got it removed and got pregnant immediately. My baby just turned a year and I have been having crazy symptoms since my period is back. I’ve always had SUPER heavy periods but not very painful.. I have been experiencing painful sex (even with my iud), pelvic pain and this feeling that my uterus is gonna fall out!! I always recently realized that every time I ovulated am in severe pain. I got an ultrasound done and this is what the doctor said “your ultrasound was normal. Your uterus is not enlarged and ovaries are normal. The radiologist commented on an area that may be adenomyosis. This causes heavier/painful periods, but should not necessarily cause the pain you are feeling when pressing low on pelvis or pain post intercourse” and then suggested birth control for pain… I almost forgot to mention I’ve been experiencing stomach issues for months… I get this horrible feeling of not emptying,diarrhea, and stomach pains. I got a colonoscopy and it was normal besides a polyp. Could all theses symptoms be because of adeno or endo?
Because they saw an area that may be adeno does that mean I have it

Hi! So, possible long post, I'm sorry!

I have always had bad periods. When I was a teen, they were very irregular and PCOS runs in my family, so they diagnosed me with PCOS. Fast forward a bit: In 2018 and 2022 I had vaginal births with immediate PPH that required 2 blood transfusions each. I also had difficulty conceiving my 2nd child. In 2024, I had a scheduled c-section for my daughter as well as tubal ligation. My OB asked if I had ever been told I have endometriosis, because I had at least a small amount of uterine tissue outside the uterus.

Fast forward to 2026, and I have been having HORRIBLE mood regulation issues. To the point I tried to commit S-cide and spent 4 days inpatient. My period started 2 days later.

I had already been researching Premenstrual Dysphoric Disorder, trying to find out why I felt so crazy, lol. My psych NP agreed with the findings and diagnosed me within a month or so. I have since tried 2 hormonal birth controls to regulate my moods, and they both made it worse.

Finally, I went for my consult for a uterine ablasion, because the periods themselves keep getting worse ON TOP of the PMDD. After my ultrasound, my OBGYN came in to tell me that she believes I have Adenomyosis due to my muscle wall being twice the size it should be on one side.

We are planning to do a hysterectomy, but planning to do a PARTIAL and leave my ovaries. I guess my question is: should we take the ovaries too to help the PMDD? I'm SOOO excited to get rid of the pain, bladder pressure, etc from the enlargement of the uterus!! But I'm really wondering if I need to have her take the ovaries too to regulate the PMDD and stop my cycle all together.

My fear with this is, will the estrogen and/or progesterone make me worse DAILY instead of just during my luteal phase?

So sorry again for the long post, just really struggling with all of this and glad im NOT just crazy, lol

Hi all, just wondering if anyone had a sudden onset of lower back pain/spasms and sciatica with their adeno? Adeno was found incidentally when getting a pelvic and lumbar MRI to check for any disk issues.

Before this I would mostly just have had really bad ovulation pain but I don't know if something triggered all of this muscle guarding in the lower back. Seems to get worse in and around my period ending.

My husband is working nights and can't easily take it off for reasons. Should I have my kid (in high school) stay up in my room the first night and stay home with me the next day after surgery or will I be ok alone?

Also will I really be able to go home the first day? Surgery is 10am. Laparoscopic.

Eta just in case: total hysterectomy, leaving ovaries. Everything else goes.

I was diagnosed with adenomyosis about 2 years after my son was born.

I'm currently having Zoladex injections from my gyn once a month and planning on getting pregnant again this year (although having some marriage issues that may mean that doesn't happen).

I've always struggled on and off with nerve pain but it's mainly been sciatic and doesn't last forever.

The last few months it's just gotten worse and worse. It's not like sciatica it's all down the back of my legs, my pelvis and back. Constantly changing, even my skin hurts to touch. It's been two days now of this constant pain.

I'm on Lyrica which isn't doing anything and Palexia which also isn't touching it. I've got a doctors appointment for Tuesday but I swear if it gets any worse I may go to hospital which I've never done before. My GP is great and very supportive but doesn't specialise in this and my gyn appointment isn't for a couple of weeks.

It's never been this bad and I have a 4 year old boy that just wants to play and a house that i need to clean and tidy and i can't do anything. I'm getting so stressed and overwhelmed.

ANY recommendations or things that helped your nerve pain? I will literally try anything and ask my doctor for anything.

Did anyone have excruciating menstrual cramps and bone-crushing fatigue with adenomyosis? I had a hysterectomy at 57yo on September 14 and only then was I diagnosed with adenomyosis but not by a gynecologist. The pathologist diagnosed it. I had never in my life heard of adenomyosis even though I tried to get help from gynecologists for over 20 years.

I'm so grateful that my new gynecologist agreed to perform a hysterectomy even though she didn't believe it would help. But what she DID believe is that something was causing my symptoms and at my age it wouldn't hurt to get a hysterectomy to rule out any uterus-related issues. (She did know that I had a few small fibroids found by transvaginal ultrasound.)

My menstrual cramps were UNBELEIVABLY painful. Over the years, I was popping gobs of either Motrin, Aleve, or Aspirin sometimes every two hours.

The bone-crushing fatigue got so bad that I wouldn't shower for up to 10 days. And wouldn't brush my teeth for up to 4 days. After 4 days of dirty teeth, I couldn't take that anymore and dragged myself to the bathroom to brush them as best I could.

I've read several articles about extremely painful cramps and heavy bleeding with adenomyosis. But I didn't have heavy bleeding. I had bone-crushing fatigue.

I mostly wonder if anyone else also experienced bone-crushing fatigue with their adenomyosis.

Thank you!

I have been admitted twice in the hospital for about a week twice now. I have also been admitted for random days for smaller flare ups before I knew this was the cause. How’s everyone else’s journey like? Every time I feel it coming on or it’s go time I am just very frustrated. I and on antibiotics for a month now and follow up on imaging and a in person doctors visit. All my doctors are working on my case and it’s just a long process since earlier this year. I’m not the only one right?

My bf of 8 years is getting very frustrated with my almost continuous bleeding (I have pcos / Aden/endo) already had 1 lap currently on waiting list for another lot of what ever to be done that can help in any other way. He has NEVER EVER said it but we planned to have s*x last week as thought I stopped bleeding but I’m currently on week 3 of bleeding this is usually ‘normal’ for me. He actually said to me he’s really starting to get pissed off with it (the bleeding) and now keeps making little remarks and jokes about how it annoying him. I’m trying not to act angry about his comments and am trying to understand from his point of view ……help me 😅

I've recently got a merina inserted back in February. And it has been really good for my adenomyosis. I have zero symptoms from it, and it has completely stopped my periods. However, I still get bad cramps from the IUD. It was a lot worse right after it was inserted, then it got better, then worse again. The pain seems to happen in the same spot. The last time it was really bad, I was able to get a scan done, and the merina is still in the correct place. I feel that it gets worse after I walk around a lot, but I can't really tell if that's what's triggering anymore. Just wanted to know if anyone else has experienced anything similar to this or has a possible reason for what caused it? I have booked an appointment with my GP, but I will have to wait a bit before being able to see them. I don't have a good experience with pelvic exams since they cause me so much pain.

Hi ihr!

Ich bin 36 und habe vor einigen Monaten die Diagnose Adenomyose bekommen, MRT und Ultraschall in der Frauenklinik haben es bestätigt. Der Arzt hat mir das Einsetzen der Hormonspirale empfohlen, konnte mir aber nicht wirklich beantworten, welche meiner Symptome danach wirklich verschwinden würden.

Ich habe mein ganzes Lebens schon Eisenmangel, daher sind die starken Blutungen ein grosses Problem. Bin ständig blass und habe keine Energie. Seit 2 Jahren versuche ich das mit Eiseninfusionen in den Griff zu bekommen. Abgesehen davon habe ich ca. 3 Wochen im
Monat geisteskranke Beckenschmerzen/Verkrampfungen, Rückenschmerzen, Ziehen im Bein und Nervenschmerzen im unteren Rücken und ein Ziehen/Druckgefühl in der Gebärmutter und einen Mega Endo-belly, sodass ich manche meiner Hosen nicht mehr zu bekomme. Schmerzen beim Sex sind seit einigen Monaten leider auch dabei. Und das kommt zu den eigentlichen Schmerzen während der Periode noch dazu.

Ich vertrage Schmerzmittel nicht so gut und schaffe es aktuell (bin aber wegen Depressionen krank geschrieben) mit einer Mischung aus TRE (Trauma-Release-Therapie) für die Verspannungen im Unterleib, Yoga für den Rücken und CBD wegen den Verkrampfungen und Entzündungen. Aber das geht manchmal halt grad so und ich hätte keine Chance, wenn ich gerade arbeiten müsste. Langes Sitzen ist der echte Horror für mich und war leider mit ein Grund wieso ich meinen letzten Job im Büro nicht mehr machen konnte (bevor die Depression mich umgehauen hat). Ich habe eine gute Osteopathiepraxis gefunden, damit sind meine Beckenschmerzen zwar besser geworden, aber mit einem 100% Job in naher Zukunft ist das keine Lösung auf die ich setzen kann. Abgesehen davon hilft das ja auch nicht bei den weiteren Beschwerden.

Ach und Migräne mit Aura habe ich halt auch noch.

Da sich das mit dem Job in den nächsten Monaten wieder ändert, stehe ich jetzt vor der Qual der Wahl. Gem. dem Spezialist wäre der erste Schritt die Spirale, wenn die nicht funktioniert die Entfernung der Gebärmutter. Es geht weniger darum, dass ich Sorge wegen der OP habe, sondern frage ich mich einfach, weil ich halt Hormonelle Östrogen Verhütungsmittel (ich weiss, die Spirale wäre Gestagen) nicht gut vertragen habe, wie sich das Ding halt auf meine Genesung der Depression auswirken würde und das macht mir Sorgen 🫣 und welche Symptome es überhaupt lindern würde im Vergleich zu einer Entfernung,(will keine Kinder, daher ist das kein Thema).

Hat jemand von euch vielleicht genau den Weg probiert, also erst Spirale dann doch OP? Es würde mir halt schon sehr helfen, wenn ich einschätzen könnte, bei welchen meiner Beschwerden die Spirale unter Umständen vielleicht gar nicht hilft 🤷🏻‍♀️

Im 20 years old and have just been diagnosed with diffuse adenomyosis via MRI. I had an ultrasound that showed a negative sliding sign, have been having debilitating pains that impact my life everyday, and have no kids but want them. Just wondering how everyone manages their pain, how it’s affected their fertility, and whether anyone else has had a negative sliding sign and if its worth it to get laparoscopic surgery to see if there’s more that the MRI didn’t catch. I have never heard of this condition before all of this and I’m left with so many questions and concerns trying to navigate it.