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.

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!

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.

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?

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

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.

hi everyone, i’m a 20F with diagnosed endometriosis and suspected adenomyosis. endo was suspected since i was 13. i’ve been with my partner for over 2 years. kids, marriage and all that is coming in the next few years and we’ve been talking about it. I’m stage 1 endo, leaning towards stage 2. i’m really worried I’ll get to stage 4 and will struggle to get pregnant. i’ve always wanted to be a mother and he really wants to be a father, he always says to me that he doesn’t care if we have kids or not and he loves me no matter what happens but i can’t help but feel broken that the chance of having kids could be robbed from me. i’ve gotten pregnant twice and miscarried both times pretty early. what im getting at is, people with endo that worried about fertility, did you have kids young? how did you find that? having kids young? i know everyone’s endo is different but id really love to hear other people’s experiences. i’m not ready to have kids right this moment but i would be in the next couple of years but im really really scared of being infertile, hence why im considering having kids around 22 or so. i’m so sorry to all of us that have this disease, it’s truly unfair and heartbreaking. please share any experience, anything is helpful. thank you all🤍🤍

edit: my endo was found in my left uterer, both uterosacral ligaments, my left ovary was attached to my sigamoid bowel but they managed to separate it and i’ve got new endo kinda starting to grow around the place. they did an excision about 3 weeks ago on me and i’ve had my third mirena iud put in.

Title says it all. Had surgery October 5th and I caught a cough and a cold. I went to the doctor today so I have a plan as far and meds to keep my lungs clear. Pretty sure I got it at the hospital because that’s the only place I’ve been since surgery. Every cough is misery and I’m just stuck like this.

Just need a place to say this is so stupid and I can’t catch a break. Has this happened to any of you guys? Please tell me I’m not alone. I pretty much had a mental breakdown yesterday because I physically cannot handle anything else.

Just pushed through for 10 years of pain to get a diagnosis and surgery. All for my body to say “ you thought you were getting a break from doctors and always being sickly…..sike” FML with a capital F.

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.

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?

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?

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, 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.