r/adenomyosis

I am perimenopausal, 53 and still a clockwork 28 day cycle. I do have PCOS and recent ultrasound says I might have adenomyosis. Problem is my cycles are extremely painful and heavy, with hourly flooding on days 2 and 3, and so I am anemic. My gyn wanted me to try Slynd, hoping it would reduce or maybe eliminate my cycles.

So far I am extremely fatigued. And extra hungry, though I calorie count so at least I'm not gaining weight. I had been very active at the gym, now I have zero energy.

I can deal with that, and I've heard that those things might level out after a few months.

The scary thing to me is: even before the first pack was gone I began my period around the 3rd week, a week before my actual cycle would have began. It is extremely heavy - but only for a few hours per day - then goes lighter until the next day. It's always the worst around 8 or so hours after I take the Slynd dose (I take it at bedtime). It is also very painful, and it looks like you cannot take NSAIDS on Slynd and Ibuprofen is the only thing that has saved me these years up until this point. I'm on day 7 now, 5th day of heavy bright bleeding, Gyn wants me to keep going.

Does it get better? Is there a good chance it will lighten/get rid of my cycles in a few months?

Between the fatigue and pain and bleeding I'm just so discouraged.

Thanks for any help/stories/advice.

When I mentioned to my dentist that I may be unavailable for dental treatment due to potential hysterectomy recovery we talked about adenomyosis. I found out that his wife also has adenomyosis and she thinks hers got a lot worse after she started taking creatine.

This jogged my memory and made me realise that I took creatine for 5 months at the end of 2024 and in that time my adenomyosis also became more painful.

This would make sense because it helps build muscle and the uterus is a muscle. I appreciate this is only an N of 2 so very small sample size :) but creatine might be worth avoiding if you are considering it!

Hello everyone. I am 23 years old and have been debilitated with excruciating pain for 10 months now- with symptoms that were increasing throughout the years prior.

After endometriosis excision surgery failed to alleviate a large amount of my pain and symptoms continued to worsen, I went to see Dr. Andrea Vidali and his ESSI practice.

I received Botox into the uterus and pelvic muscles. 100 units in the uterus and 200 into the pelvic muscles.

I am two weeks post procedure. My pain has been largely nonexistent and has been knocked down from a level 7-10 to a 0-3. It’s mostly a 0-1. I am able to move now and walk without pain. I have now gone a week without any strong pain meds. My quality of life has GREATLY improved.

Prior to the procedure I was admitted to the hospital for intractable pain. I ended up in the ER monthly. I spent all my time in bed, battling horrific pain. I have been highly reliant on pain medications, strong ones too.

I know I am SO early into this process but with my pain being so low for the longest duration it has ever been in 10 months, I knew I needed to share this.

I absolutely will keep updates.

I know nothing in this area is a one size fits all solution but I hope this helps someone.

I got diagnosed with mild/moderate adenomyosis via COGU scan yesterday.

I have had 2 laparoscopies in the past with no endo or anything else found (these per performed by general gynes) both fairly quick surgeries.

I am seeing a surgeon now who is an endo specialist and he was the one who suspected adenomyosis from looking at my past photos.

He is debating whether surgery for potential superficial endo is worth it, especially given i have already had 2, and there was no DIE found in the scan i had yesterday, but i am not sure if it could still be missed even though it was a COGU scan from a gynaecologist?

I just feel defeated given i have had 2 surgeries by people who clearly didn’t have the expertise in this, and feel like I can’t trust that they didn’t miss something that may be even superficial endo. But also don’t know if another surgery is worth the risk/hassle.

The thought of being on hormones forever to deal with the pain is pretty disheartening, and hysterectomy is not an option as i want babies in the near future.

Let me know if you have any thoughts or advice!

I (f21) had a pretty sudden onset of cramping today, and it started pretty normal. As the evening continued it started becoming legitimately incapacitating, so I took a 5mg oxycodone. I let that set in and it still had absolutely no effect on my physical pain, so I took a second one a couple of hours later. I have had barely any relief from my pain and I can’t even go to the hospital because at this point I know there is nothing more they can do for me :( I cried on the toilet, and I VERY rarely cry from physical pain even after my first surgery, it wasn’t this bad. I don’t know what to do or why I’m even writing this. The pain is radiating and pulsating through pretty much my entire abdomen and vulva (I also have endometriosis😍) I haven’t done anything out of the norm that could explain why this is happening to me, besides knowing my body just hates me. It sucks. I have a consultation for my hysterectomy coming up in June but this pain is literally just too much for my body to handle. My dog is even worried about me :(

Last night I went to a movie and I always have a hard time sitting in certain positions for too long. It causes pain in my sciatic and tailbone area. But after I got home from the theatre I was in so much pain. I don’t know how to explain but the pain was so deep it felt like when you have a tooth pulled and cold air gets blown on it? Like that deep ache that comes from a nerve? I hope that makes sense. But I kept waking up from the pain. Has anyone else had this happen?

First of all, thank you to this community for sharing all your experiences. It really helped me to prepare for what to expect along this journey.

Last week I had my laparoscopy to look for and stage suspected endometriosis, and they did find stage 2 endo (behind my uterus) as well as a blocked fallopian tube, and an enlarged uterus pointing towards adenomyosis.

I echoed all the doubts that I often see posted here but was still mentally prepared for the physical side of things, the pain, recovery, whatever they might find. What I wasn’t prepared for was how often I was asked about having children, or how much it was just… assumed.

At pre-admission, although the lady had good intentions, she assured me that next time I come to the maternity ward it will be to have a baby?? The night nurses first question for me was to ask how many children I have? And when my Dr came through after surgery she mentioned some options to combat the infertility. I had never expressed to her that preserving fertility was my main goal and actually previously let her know that I don’t think that I want to have children but she seems to just ignore if/brush it off.

I understand that fertility can be a big part of this diagnosis for many people, and it certainly is important. But it felt strange how much of the focus it seemed to be even before I was able to process everything especially since I was not expecting the other findings.

It worries me that perhaps endo/adeno is framed heavily through a fertility lens, rather than just focusing on pain, quality of life etc. I’d like to ensure that when I see my Dr for my post-op that fertility is not my main focus but that my issues are not then brushed aside because “oh well, she doesn’t want children anyway” I get that this is a major assumption and I hope it’s not the case.

Has anyone else experienced this? Did you feel like your care was overly focused on fertility, even when that wasn’t your priority?

I’m trying to understand if symptom patterns evolve as the condition progresses.

I wanted to come on here and share my experience so far from getting diagnosed with adenomyosis to now. I read a ton of posts about the IUD before getting it and they were all negative so I thought I would share a positive one, from what I see so far!

My adenomyosis was pretty severe with super heavy periods, deep contraction cramps, contracting even when not on my period, and just an overall horrible. I went to like 4 doctors I think, all recommending an ablation or hysterectomy. I wasn’t super comfortable with either.

Then I went to an amazing doctor that listened to me and she wanted to try a Liletta IUD because it’s not as strong as Mirena and she said it will calm my uterus down. it won’t “cure” adenomyosis, but it will calm down the uterus, thin the lining out, and prevent it from further progressing.

I decided to give it a try and wanted to give updates along the way for anyone who is dealing with this or might be dealing with something similar. I know everyone is different and reacts differently, so this is my experience.

I decided to get the Liletta IUD put in to help my adenomyosis. The doctor required that I get it placed within 7 days of my period because this cuts down on pain and discomfort. Your cervix is already opened. She also did local anesthesia. I will be very honest. The local anesthesia is not super comfortable and the cervix does not like being messed with at all. I wouldn’t say it’s severely painful but all those nerves down there make it very uncomfortable and for me it was the “worst” part of the procedure. But the doctor said it works immediately and does take away a lot of pain. Then the IUD was inserted and there were some light cramps, but nothing worse than what I get on my period. In total, it took 5 minutes.

I was crampy that day so ibuprofen (take it an hour before the procedure) and the heating pad helped. Just take an easy day.

I was crampy for a few days but nothing crazy. I was also a little more tired, probably from stress, anxiety, and the insertion.

Now I am 8 days out. The cramps have gone away, no bleeding, and it honestly feels like my uterus is calming down. Not perfect but it is definitely calmer. Sometimes when I am on my feet all day, by the end of the night my lower back is destroyed. It will feel congested and like I just want someone to pop it. But the past couple days I feel my overall energy is up a little and after being on my feet all day, my lower back isn’t killing me. (That congestion feeling is due to like varicose veins on your uterus which is very common with adenomyosis and can make your uterus and lower back feel heavy and congested).

The IUD is calming everything down and it’s only been a week so far. I also feel calmer. Usually I am a little on edge because of the constant dull pain and ache but I am starting to feel a little better everyday.

I will say that so many factors go into play on how quickly you feel effects, how your body reacts, or even the severity of your adenomyosis.

So far it have been positive and I see a light at the end of the tunnel! I’ll update after my first period!

I was diagnosed with adenomyosis 6 years ago, at that time my only symptom was extremely painful periods and the dreaded belly and bloating. Went on continuous birth control and had 5 years symptom free without a period. In October the meds stopped working and I went through about 6 weeks of on and off heavy bleeding or spotting straight. Stopped taking the birth control and my cycle has settled, but the symptoms have been so much worse than it was before the meds.

Does anyone else get really disoriented/dizzy with like intense brain fog with ovulation and your period? It hasn’t happened to me before this cycle. My last ovulation I had a full day where I had a slight headache and felt really disoriented, and slow and had waves of dizziness and nausea.

I am now on the third day of my period and have the same thing without a headache. It started yesterday and I woke up still feeling the same.

Thanks.

Bonjour,

On m’a diagnostiqué l’adenomyose il y a un mois via une échographie endo vaginale

Je dois maintenant faire une irm pelvienne pour conforter.

J’entends bcp de retour sur l’irm pelvienne mais je voudrais avoir des témoignages svp. Obligatoire le lavement ? L’injection?

Y’a t’il des risques juste après l’injection? (Je conduis)

Merci à vous

Hi all,

I just found this community. Only today I (finally) saw a gynaecologist, who diagnosed adenomyosis.

When I was in my teens, I had heavy, painful, irregular periods, and was out on a BCP. On & off for years, before getting married & having my 4 babies.

It’s been the past 2 years, my periods have hit with a vengeance, only getting worse as time goes by. Crippling depression &/or anxiety in the days leading up to it, and then debilitating pain for the first days of the period. Multiple OTC pain medications on board, crying in the foetal position in the shower, hot water bottles to bed (even in Australian summer), hideous pain.

Iron deficiency. Extreme fatigue. All the things. I tried alternative support, like naturopath prescribed hormone support herbs, iron supplements, etc.

My Gynae suggested the Mirena as a first option… I’m hesitant, as I tried it as a form of birth control after baby 3. I had headaches, constant bleeding, I was cranky, and had it removed after 2-3 months. But my only other option, realistically, is a hysterectomy. Which is too permanent and I’m not ready for. (She mentioned ablation, but clarified it would be minimally effective and short term).

If you read this far, thanks - if not, and you just scrolled to the bottom, fair enough. Any suggestions, support, tips, help, anything, would be amazing. Thanks all.

Just trying to work out what my symptoms could be related to.

I (21f) just got my uterus removed due to deep infiltrative endometriosis and adenomyosis 2 weeks ago. The pain has gotten worse and I just wanna see if other people relate. Is it normal (I only ask because my specialist says it is) to have a burning, stabbing, shooting extreme pain just sitting down and going to the bathroom normal? I’ve been taking antibiotic but it’s not helping. I’ve been having really awful gallbladder pains and I haven’t gotten a good night’s rest since having the hysterectomy on April 3rd. The gallbladder pain feels like an entire swat team is shooting me, lighting me on fire, stabbing me and pulling on my gall bladder. I have immense pain in the middle of my shoulder blades and on my right shoulder. I haven’t really been able to eat a whole meal because I’ve been feeling so shitty. I really wish I was feeling better. I can barely get up and move around the house and it’s torture to stand in the shower (even w/ a shower seat). My specialist has pretty much abandoned me and won’t tell me anything about what’s going on with me and didn’t even print out my full report. I was also rushed out of the hospital the second I woke up even though I was throwing up 6+ times, couldn’t see, couldn’t walk and felt like I was gonna pass out (and I did). Maybe I’m being overdramatic, I just wanna know if other people have been feeling this way after their hysterectomy.

So, I am nine days away from being six weeks post-surgery, One ovary kept, uterus removed and one ovary. My surgery was on March 18, and I feel pretty good. However, they've noticed some pains in my incisions—the first couple of weeks, it just felt like electricity in them, like zaps that lasted about two weeks. Now, I’m experiencing those same kind of zapping, electric zingers I called them on the vaginal cuff, and I’ll tell you, it feels strange, weird, and also uncomfortable. They don’t last very long—maybe a couple of seconds—and then they go away. Just thought I’d share.

Also, I’ve felt really emotional the last two weeks. I cried three or four times, which I usually only do around when I had a period. This past week, I’ve been crying three times—not fun, but whatever. There was nothing to cry about; everything is going well.

Hey y’all! Just wanted to share because I had to do so much research/investigating on my own and if I can help anyone… then great! I’m 47 and have adenomyosis. Was confirmed with a Tesla (3T) MRI/ had enlarged uterus. It took me 10 years to get that diagnosis…before that they thought I had interstitial cystitis. My main symptoms have always been about one week before my period, horrible bladder burning (feels like a UTI), horrible lower back pain and debilitating leg pain and heaviness that almost feels like sciatica. I also have heavy bleeding and anemia. My Urogyne wants to do a hysterectomy, but I was giving myself a year of trying “natural things” to see if I could improve anything before pulling that trigger. I’m also on Amytriptyline (20 mg) to help the referred leg pain and bladder pain but have started waning off that over the last few weeks because of the weight gain it has caused. Ok, so here’s what is helping a ton… DIM and NAC! I got my period today and had ZERO pain leading up to it…this feels like a major victory! This is the second month that has been pain free. I’m taking 400 mg of DIM every morning. I like SM nutrition brand (I got it off amazon). Bonus, my hormonal acne and breast tenderness has completely stopped. Zero side effects for me. Along with that, I’m taking NAC (1200 mg) in the morning. I take the PURE Encapsulations brand (Amazon). Zero side effects that I’ve noticed. To me, those are the heavy hitters. In addition to those, I’m taking NAD, EPA/DHA fish oil, and quercetin (500 mg) …I’ve been on those for over a year and it wasn’t until I added the DIM and NAC that I noticed the real change. I’m still taking all of those though. I’m also taking pre/probiotic from the brand Happy V. I take 2 in the morning. I know it’s a lot of pills, but it’s better than having surgery and or taking a pill that causes chemical menopause (my doctor also wanted to try that). Just wanted to share in hopes that this helps anyone as adenomyosis is so frustrating and doctors seem to know jack!

Hello all,

I just received a call from the hospital and I’m finally getting the Mirena next Wednesday. Pre-op appointment this Thursday coming.

I tried for so long to avoid it because I am absolutely petrified about it and the side effects. Even when I was in hospital because I almost died due to losing too much blood, I was still reluctant, but after several iron infusions… the time has come.

I’ve tried several pills and they were all terrible. Made me super depressed or nauseous, and I was incredibly worried if I would gain weight (I have body dysmorphia and have struggled with eating disorders in the past).

My anxiety has now started up again because I’m so scared about this. I’m scared about the pain, potential perforation, weight gain, acne, severe depression, nausea etc. I’ll be going under, so at least that’s a plus. They will also do a biopsy at the same time and another thing but at this point I can’t remember what because I’m quite anxious.

I go overseas for three months at the end of May, and I’m worried if it’ll be incredibly painful the whole time, or if the bleeding would be worse. My doctor told me that I can just present to the emergency (either beforehand or overseas) and they’ll remove it, but I’m worried if that will happen because I won’t be going under I guess.

I’m absolutely terrified. The bleeding is the main issue at the moment (iron infusions every 5/6 months), even though the pain can be quite intense sometimes. I got diagnosed last November through MRI and contrast, and have both endometriosis and adenomyosis. Have a bulky uterus… Quite a few big fibroids, and have chocolate cysts. I’m worried this will make things worse.

Can people please give me some positive stories about their experiences with the Mirena? And what does the pre-op appointment entail? My AuDHD brain needs some positive stuff so I can calm down I guess. Thanks in advance ❤️

Hi,

I recently got diagnosed with adenomyosis (I knew I had endometriosis already due to endometriomas). I have a lot of pain, bloating but thankfully no heavy bleeding or anemia.

I react quite strongly to any medication and usually only need the smallest dosages to work. Also, I've taken the contraceptive, combined pill and it really went onto my mental health (depression).

I understand that the Mirena/Liletta is usually chosen but it's also the highest hormonal dose on the IUD market and I know my body/mind reaction towards big doses.

Has anyone tried the Skylar/Jaydess or Kayleena IUD and had great adenomyosis improvements on it? Any good/bad/neutral experience sharing is welcome.

Thanks

My operation is due on 7 May. I have cancelled it 3 times for various reasons, and I feel like if I don't do it now, I never will. I just turned 40 at the beginning of April - no children. I am having an appointment next week regarding UAE as I have adenomyosis, which was found last year. I've always suffered with painful periods. I have almost constant lower back ache, bloating, feel like every part of my body is inflamed, always tired; however, I don't know how much of this is linked to adenomyosis, and it has reached a stage where I would rather have a hysterectomy for myself, for my own wellbeing, to at least find out if it is all connected to the aches and pains throughout my body.

So, I'm 2 and a half weeks away from it, and I should really start preparing - so would love to hear everyone's suggestions - food, medication prep, clothes, pillows, what to take with me to the hospital etc. Everything.

I have also been eating vegetarian, and lots of plant-based, since January, and I would greatly appreciate anybody's suggestions for nutrition and training beforehand. I boulder, cycle, and walk, with a bit of weight training, so maybe my training schedule doesn't need to change too much in the next couple of weeks.

Thanks in advance!

PS I would also love to hear from other child-free women who have had the surgery - the only person I know in real life who has had it is my mum, and she was 39, and had had 10 kids by the time she had hers.

I posted a few weeks ago here and just wanted to come back and thank everyone for their kind words and encouragement. My ultrasound came back suggesting adenomyosis and I apparently have a large cyst (slightly smaller than a tennis ball) on one of my ovaries. I'm now waiting to hear from my doctor on when I can get in to talk about it and figure out next steps.

In the meantime, the radiating pain in my legs has gotten so much worse and is affecting me not just when I'm on my period anymore. Does anyone have suggestions that helped ease that pain for you (right now, I'm doing tylenol and heating pad).

While dealing with these symptoms is awful, and I wouldn't wish it on my worst enemy, it does feel good to be validated in that there is something wrong and it isn't normal. I'm so sorry that so many of us have anxiety over simply being diagnosed with something because we're too often told our symptoms are normal or we need to lose weight. Best of luck to you all, and thank you again for being so kind in my moment of anxiety <3