Anyone else just exhausted and over it? Sick of calling into work? Sick of pain? Sick of few satisfying solutions? Sick of lack of real pain management for biopsies and IUD replacements and just…everything? Sick of being tired? I’m just feeling whiny and over it.

Hi all,

So grateful to have found this community ❤️ my husband and I are in the process of deciding whether or not I go with a hysterectomy vs symptom reducers (Mirena and a D&C to remove lining are the options my dr has presented so far).

We did want to try for kids, but I’m curious to hear if anyone has actually successfully gotten pregnant AND reduced / eliminated symptoms. My fear is that this just never ends and my quality of life is suffering so badly, I’m worried about keeping my job at this point.

If you were able to get pregnant, has anyone done so without IVF? Basically I don’t want to put my body through more than it’s been through and I feel like doctors can be less than honest about real statistics. Thanks in advance!!

I had a hysterectomy a year ago for adenomyosis, but I’ve been having a lot of pain, primarily on my right side, they said my ct scan was normal, any insight? I have more images if needed.

Just received blood work back and ferritin is extremely low, was recommended to do a one time infusion and then maintain with supplements. I was told no side effects with the IV infusion. Would love to hear experiences!

Hi there,

I am wondering if there is anything that is helpful for anyone that suffers from adenomyosis relate acute severe pelvic pain only during periods (often described as cyclic and labor-like)

I've already researched a few so please don't mention or include the following in your posts:

• IUD (ie. Mirena)
• Birth Control Pills
• Opiates
• NSAIDs (Ibuprofen, Ketorolac, Naproxen, Mefanemic Acid)
• Hysterectomy
• Ablation
• Uterine Artery Embolization
• Dietary Approaches
• Vitamins or Supplements
• Pelvic Floor Physio

I was just diagnosed with adenomyosis this week. In addition to adeno, I've also been dealing with chronic vulvar eczema for the past 6 years. I know adenomyosis causes inflammation and immune system issues, so I'm wondering if it's possible that the adenomyosis is contributing to my eczema.

Do any of you have vulvar eczema? Have you had a hysterectomy and did it help with your vulvar eczema? If you haven't gotten a hysterectomy but you have vulvar eczema, is there something else that helped you?

Last week I had my first iron infusion and I am booked for one each week for the next 7 weeks. What I’m wondering is, without treating my adenomyosis and continuing with heavy periods, will this have any lasting effect? I am seriously considering a hysterectomy but also need to wait to get my iron levels up first. Like I have no idea how long 800mg of iron will last with heavy periods or how it translates to iron levels.

Figured I would write this while it is fresh. I will update this maybe 1-2 more times in the far off future after my body settles into a new norm.

I am 4 days post op.

My symptoms before the hysterectomy were:
-painful periods with HEAVY bleeding for 4 days, spotting for another 4
- chronically anemic for 10+ years extreme fatigue most of the month, heart rhythm issues they think are related, and PEM with even walking a mile
- frequent BV/UTI
- fertility issues
- past pelvic pain, got better with therapy
- continuous nausea
- chronic constipation

I am 37. Have tried all the hormones and failed. Had 1 child and am done having kids. So hysterectomy was the best option for me.

My doctors think that in 6months most of these should be resolving. They said at min painful periods and anemia should be gone. I will update around then.

Onto my experience. Honestly surgery was easy. Worst pain out of it was they cut my lip with anesthesia and so I have a swollen top lip.

Pain wise I would rate it a 3 (where 10 is being on fire). I have not taken the narcotics and have just alternated Tylenol and advil. After the first day I am not even using max strength dose.

I have been getting really nauseous. Glad I refilled my zophran before this. I think my anemia and surgery just kinda put me in a bad weak spot. Doing 8mg a day for Zophran right now. Hoping to stop after the first week. But yesterday I spent a few hours in the bathroom thinking I was going to be sick.

Other thing I picked up on is a weird uptick in emotions. I have been crying a lot. My little one turns 1 in a few weeks so I just keep crying at that and then I can’t hold them so I sit next to them and cry for not being able to hold them. Luckily I have a champ of partner who keeps reassuring me my baby won’t forget me. Partner encouraged me to not put off the surgery due to my symptoms being horrible.

I have been walking 5-10 mins every few hours around the house but have to remind myself to take it easy and try not to clean.

Overall, this is not a bad experience at all. I think my C-section was MUCH worse. I will actually be going back to work tomorrow due to extreme boredom on my part and I work from home. I won’t do meetings until next week but will do work.

Items I recommend:
-period underwear, granny panty style 1 size too big. These have been a life saver. You should spot a little. I bought postpartum underwear too but didn’t touch them.
-hysterectomy pillow, first 2 days that was super helpful.
Everything else that was recommended I didnt use.

Hoping this helps someone. I had read some horror stories on Reddit and almost wanted to back out. Glad I didn’t.

Note: got pathology back. They found some cysts but no adenomyosis in the section they looked at. Doctor said this didn’t mean I didn’t have it and not to worry. Said my symptoms and ultrasound were enough in his eyes to say that was the issue. Most likely just the tissue they looked at and the timing of the surgery were against that diagnosis. I had just ovulated (another cyst that he left due to risk).

Because I’m still struggling to get a doctor to listen to me and everything is being blamed on my pelvic floor being too tight, per the pelvic pain doctor (pelvic floor therapist says they are too loose), I got the pleasure of having an urodynamics test done.

The test was painful, even though they said I would be slightly uncomfortable with burning, but every time they moved the catheter I would get a stabbing pain. Per their report I have a voiding dysfunction. I could only get my bladder to empty (when the catheter was in) in a fully seated, bent over position. Laying propped up with my legs spread I couldn’t get anything to happen. It almost felt like my urethra was 100% blocked. I tried pushing and got in trouble because it pushed out the catheter.

Help me understand what could be causing this because until I find a gynecologist that will actually listen, it’s anything and everything else BUT my uterus…..you know because I don’t bleed during my cycle because of a past ablation, so it not my uterus

I was diagnosed with stage 2 endometriosis 4 years ago during a lap whilst TTC for our son.

Now we are TTC for our second and I had another lap over a month ago. Stage 2 endo again, but this time an adenomyosis diagnosis. My doctor said it's mild, not as bad as others she's seen, but yeah, it's there.

Makes sense because I felt like the symptoms this time around felt different than the first time, and I had wondered if it was adeno. Now I can tell the difference.

We've been TTC for 8 months, last time took a year and a half but I had the surgery at the 12 month mark. Hoping a positive test will happen soon.

What's everyone else's TTC journey been like with adeno? I'm stressed and sad.

Hi, long time silent observer on Reddit, first time poster. I was just diagnosed with adenomyosis and have been comparing my experience with others on here. I was previously diagnosed with PCOS and abnormal PAP and referred over a year ago to a women’s clinic (I live in a small rural town) where they had me do internal and external ultrasounds and a biopsy, and nothing was ever said other than “no cancer.” I was referred again this year when I found a new primary doctor and requested a hysterectomy. I was fully expecting to meet resistance or some other hoops. There was none. I was told I was diagnosed with adenomyosis a year ago and if I wanted a hysterectomy, she’d put in a referral. Aside from the prior lack of communication which frustrated me, I couldn’t believe how easy it was. I asked if she wanted me to have a scope or a laparoscopic diagnostic as my primary care provider had said might happen, but she jumped right to hysterectomy. My primary had also suggested ablation, but the OB said it would relieve the bleeding temporarily but not the pain, and certainly not long term. She asked me seriously if I wanted more kids because she had methods to help make a pregnancy viable and safe, as I had difficulty conceiving and then had pre-eclampsia and cesarean with my son. But I’m a single mom now and I don’t want to go through all that again just to maybe give birth in my 40s, and that’s if I ever find a better man - even if I did, sex is too painful 😂. Maybe it was all of these experiences compiling and being enough to be taken seriously, but it feels a little too easy now. Did anyone else find it to be an easy process? There’s also the chance my insurance says no, and I can appeal and still be told no. But it feels promising that the OB said yes.

Hey, I have experienced horrific and irregular period/ovulation related symptoms my entire life. I got an ultrasound the other day and have the images but no report... I have been in lots of pain the past few days and I'm getting nervous. Can I get a second opinion on what I'm looking at here?

I’m 25 years old and was diagnosed with adenomyosis in 2024 whilst having the kyleena IUD at the time. I had a laparoscopy last year and a mirena was put in. When it was put in I had about 7 months of being pain free but my pain has substantially gotten worse and my periods are getting longer (around 3 weeks per cycle).

My pain is getting to the point where it’s affecting my work and my social life as I’m needing to cancel due to pain. I’m seeing my gynae next month but wondered if this is a common thing?

Like just enduring the pain and ibs? Without any severe complications even by just leaving it alone

[ Removed by Reddit on account of violating the content policy. ]

Has anyone here with adenomyosis frozen their eggs - if so how did you manage your pelvic pain during your first post retrieval period?

I was told that I can expect a heavier period. I asked the gynaecologist physician who did my treatment if I can get back on birth control as it helps to keep my pelvic pain symptoms at bay and he advised staying off of it until after the first period

I’m mortified to know what to expect for pain management as I feel a bit left in the dark. When I am not on birth control, the pain is severe and equivalent to labour-like pain.

I expect a phone call with one of my nurses who will follow up today post retrieval. Any suggestions on what to request?

Hi everyone! I’m really hoping to hear from anyone who has experienced something similar because I’m at my wit’s end.

Background:
As a teenager I suffered extremely irregular, heavy and painful periods sometimes bleeding for months, passing huge clots, becoming anaemic. I went on the combined pill at 13 and ten years later switched to the mini pill due to migraines with aura.

Ovulation pain (current issue):
I stopped the mini pill in 2023 and my cycles became regular but I developed excruciating ovulation pain, sometimes leaving me bedridden for 3-4 days with nausea and pain so severe I thought I had appendicitis. My periods still heavy but manageable compared to the hell that was ovulation. Had normal ultrasound and paid for Hertility blood kit? privately and the only abnormal result was high prolactin. I ended up getting naproxen prescribed to take before ovulation.

I had twins by C-section in May 2025 and since my cycles returned I’ve attended A&E three times with unbearable ovulation pain. A CT initially showed bilateral ovarian cysts with only one then showing on a subsequent transvaginal scan but my latest external ultrasound last week after attending a&e again was normal. It’s repeatedly said to be severe mittelschmerz. It also continues to hurt to wee (a deep pain) and after opening my bowels in the days after and I feel so tender and bruised down there. It is awful.

Private gynae appt:
After 10 months still on NHS gynaecology waitlist and out of desperation as I cannot continue living like this, I paid privately and saw a gynaecologist last night. The consultant suspected endometriosis and said I’m likely bleeding into my pelvis during ovulation and recommended a laparoscopy with Mirena insertion.

I also questioned PCOS in the appointment given my previous irregular cycles, excess facial/body hair and difficulty losing weight. He acknowledged the symptoms fit and I definitely had characteristics but felt PCOS was unlikely because my cycles are regular now and I conceived naturally within a few months. He didn’t recommend hormone testing as treatment options would be similar anyway?

Where I’m at now:
I’m frustrated because I want to understand what’s actually causing this. I’m also hesitant about Mirena because I finally have regular cycles (albeit with horrific ovulation pain) and I’ve also read it doesn’t reliably suppress ovulation, which is when my pain is worst?

Has anyone experienced anything similar and did you get any answers? Did you eventually get diagnosed with endometriosis, PCOS, adenomyosis or something else?

I’m exhausted from losing days every month to this, especially with two one year olds to look after and would really appreciate hearing your experiences!

Surgery is scheduled for November 5 - total laparoscopic hysterectomy, bilateral salpingectomy, possible left ovarian cystectomy, and excision of endometriosis.

This is for suspected Adenomyosis and Endometriosis (since neither can be confirmed until surgery) and persistent left ovarian cyst.

I am 36 yrs old and live alone in an apartment with two cats. I have friends who will be stopping by but otherwise will be on my own. I’m granted up to 6 weeks medical leave but I plan to only take 4 weeks since I mostly work remote.

Any advice, tips, tricks for pre and post surgery?

I am looking for general tips on how to prepare leading up to surgery and for the weeks after.

I am already planning to prep and freeze meals. But I like to eat well since losing 75 lbs over the past 2 yrs. Recipes or meal prep ideas would be appreciated.

One final thought: I really appreciate how open, honest, and supportive this sub is. I don’t post or comment often but I still read most posts and comments. It’s given me confidence to advocate for myself and know I’m not alone. Huge thank you to the community and anyone that responds to my post!

Pelvic MRI showed posterior junctional zone thickening of 12 mm, with the anterior at 4 mm, read as "suggestive of adenomyosis."
The uterus is small (5.1 x 3.1 x 4.7 cm) no fibroids, no endometriomas, no adnexal lesions, and no free fluid.
I also had a hysteroscopy and some polyps were found and removed.
I'm planning FET and wondering how mild or focal adenomyosis like this affected your protocol and results.

Hi, I’ve been recently diagnosed with adeno, awaiting a gynae appointment to discuss options, I have no idea how bad it is but I do know my symptoms have been ongoing for 10 years or so. I’ve always struggled with constipation, but when I finally go I have the worst period like cramps following bowel movement and feel like I still need to go but can’t :( any remedies for this 🙃