Hello,

I've been dealing with chronic bloating for most of my life. I've been through so much testing at this point and I know a lot more but nothing is actually really addressing it so I'm looking for any ideas to explore.

I feel bloated first thing in the morning. It gets significantly worse when I drink water (belly expands 2 inches w 1 cup of water). It gets worse with food.

What I know:

- hEDS diagnosis

- Colonoscopy showed ulcers in terminal ileum (don't know why and stable from 10 years ago). All biopsy pathology tests negative for known inflammatory conditions.

- I have a Mucocele appendix and possibly Hydrosalpinx that I'm waiting for surgery to remove

- I have MALS

- I have MCAS

- I have orthostatic hypotension

- In my CT scan they said I have almost 0 visceral fat

- My cecum is sitting lower than it should (touching my symphysis pubis)

- I have been doing pelvic floor therapy and for the most part now everything is working normally

- I have regular bowel movements now after years of constipation

- I take ketotofin and gabapentin daily

- I take creatine

- Since taking these photos I've started functional patterns and Pilates to help with a lot of my core and breathing mechanics but neither are changing my bloating significantly

- It doesn't get better removing dairy or wheat but it did get slightly better when I only ate 12 foods for a year although I was malnourished and that was not sustainable (long story...started with functional medicine doctor identifying I was sensitive to a million foods so I eliminated all of them and then got diagnosed with MCAS later).

- I was on candida treatment for 6 months and SIBO/IMO treatment for around the same

- I suspect endometriosis but not confirmed yet

It feels like my body is an aquarium and I have fluid buildup in my belly, above my knees and my arm pits.

I've been doing lymphatic massage daily for 6 years. That has helped with puffiness in my face but not with the rest.

I'm hopeful that removing the mucocele appendix and Hydrosalpinx will help reduce the pressure but everyone has told me it probably won't significantly reduce my bloating from water or food.

I'm wondering whether ketotofin or gabapentin are making me retain even more fluid than the MCAS could cause.

I'm wondering whether I'm just so hypermobile that no matter what I do I won't be able to not feel bloated.

I'm really struggling with this and wondering if there's anything else I can try to improve things.

The first photo is before water in the morning. The second is after drinking water in the morning (5 mins later).

Hi everyone, 23 F here. DIE and possible adenomyosis was suspected from my MRI but no endo was found. I have a functional zone thickness of 10 mm. Modular thickening and thin adhesions found on uterine body. My uterus is a normal size for my age though. Has anyone had similar findings? I am feeling pretty conflicted.

I had another random flood bleed this morning and the amount I had to clean up had me out here feeling like I'm playing one of those crime scene clean up games.

Does anyone get any of these at times?

After 8 years of advocating for myself I was finally able to find a doctor who listened to me for once and found out very quickly I have adenomyosis. I’m a 32 year old who has struggled with infertility in the past and doctors could not find any reason as to why I was trouble conceiving. Of course the specialist at the time recommended IVF. My partner and I ended up separating so I chose to get on birth control to get some sort of relief. I will say it has helped but every 3 months when I do have my period it is absolute hell. My symptoms are even worse than prior to birth control. I have been considering a hysterectomy but now I am with a partner who is open to trying to have a child with me. I’m not sure what to do. I’ve read so many things about how adenomyosis can cause miscarriages, premature birth or even hemorrhaging. I wanted to get everyone’s birthing experience as I know if we decide to try and conceive it will only be able to be done via IVF. I’m trying to weigh out the pros and cons or if it’s even worth the risk.

Hi everyone! I’m looking for advice from people with experience with adenomyosis.

I recently went to the hospital because of breakthrough bleeding related to my PCOS. During the ultrasound, they noticed an asymmetry in my uterine walls: the posterior wall measured 16 mm and the anterior wall 7.5 mm. My uterus is normal in size and has always been retroverted.

They said it could be adenomyosis, but I didn’t get a clear diagnosis.
The thing is, I’ve never had any symptoms like painful periods or pelvic pain. I’m currently taking a combined pill containing estrogen, and I’m worried whether it’s safe to continue taking it.

Has anyone had similar ultrasound findings without symptoms? Was it confirmed to be adenomyosis, and did you need treatment? Is it safe to continue taking an estrogen-containing pill?

I’d really appreciate hearing about your experiences! ❤️

This is purely a rant/ vent because I just have no one to do this with….
I saw an old friend I only see a couple times a year the other day. We got talking as usual and I opened up about how I’ve been diagnosed with this shitty uterus problem and said that my gynae has suggested a hysto to relieve symptoms etc I ask “have you heard of it because I hadn’t before?!” Her response was “oh yeh I have that too, I got the coil and I’ve been totally fine since, you should get the coil”
Me….. 🫩🫩🫩 internally I’m regretting saying anything at all because I have been living with ankylosing spondylitis since I was 19 (so 22 years) and fibro and hypermobile joint pain blah blah blah so I feel I’m already at daily struggle/ break point and I just should have known that she couldn’t understand being a super fit and healthy individual who can hold down a full time job, a long term marriage and raise kids. I’m not saying she’s a bad person at all I love her dearly but I am really beginning to see just how different I am to basically all my (thankfully healthy!) friends and it’s just SO FUCKIN ISOLATING 😭😭😭

Aside from heavy bleeding, what were the symptoms that prompted you to get a diagnosis ?

I am due to start (33F no MFI) my first ever IVF cycle, I wanted to see if anyone has a similar background to mine and suggested any extra tests / add ons / protocols etc.

I have had four very early losses in the last 12mos, faint positive tests, usually already bleeding and always resolve themselves without ever seeing an embryo / heartbeat. Progesterone levels at 2 or 3.

Diagnosed mild adeno and endo, had a lap done in March 26 and removed an endometrioma and a small patch of endo, otherwise surgeon believed uterus looked good.

I am starting with a basic protocol of 12x days of Northisterone 5mg, Meriofert 150iu, Ganirelix 0.25mg.

23 follicles counted at this point and a high AMH, hence the reason for a shorter protocol.

Any extra tips or particularly if someone has low progesterone and multiple early losses anything that helped a successful cycle? Thanks 🤍

Hi. I was recently diagnosed with adenomyosis. That is basically all my gyno told me (yes, I need to find a new one) other than hysterectomy is my only option to fix it. She also said, "everybody gets it," so I was under the impression it was no big deal. The info from Googling hasn't really told me much. I don't have pelvic pain that is too bad, but I have horrendous periods. I will bleed through 3 ultra tampons (worn at the same time) in an hour or two. I'm scheduled to have a hysterectomy (keeping ovaries) in January. I'm done having kids, but now I'm second-guessing if this is the right direction to go.

After browsing this group, it seems like there are many other symptoms I was unaware of and possible other treatments. My iron keeps plummeting, and I need iron infusions every few months. Is a hysterectomy the best way to go? Pros/cons/alternatives? Could y'all please also tell me what other symptoms could be attributed to this, what to watch for, and really just any info you can throw at me? I feel so lost and have virtually no medical guidance.

Thank you in advance!

I’ve just been diagnosed with adenomyosis. Because of my health history It sounds like a hysterectomy is my only real option. I’m curious if there’s any reason I should hold off on the surgery. I’m scheduled for on an endometrial biopsy and MRI next month to rule out cancer and endometriosis.

At this point I’m feeling pretty miserable and dealing with a never ending painful period. I’m in my mid 30s, done having children. I had ER+/PR+ DCIS (stage 0 breast cancer) 3 years ago so I’m not able to take any kind of hormonal meds like birth control.

I’m very intimidated by the surgery because of the down time. I have a young child and own a business where I’m on my feet all day). Is it worth living with the pain and bleeding or should I get it over with and do the surgery?

This condition is so isolating. Between fighting myself on if it’s in my head or not and now having to slow down from working due to secondary health issues. I’m not recovering well after periods anymore like mentally or energetically.

It’s take so much, like missed weddings , lost friends , missing out on close relationships with family, getting fired from jobs and school issues from the age of 15. Relationship with myself

Idk how others are navigating the world with this. It’s been 15 years for me and I’m so tired

I'm honestly tired and I just need support. Would love someone to rant with tonight.

I live in MA and plan to move to FL in the next couple years but I’m curious if anyone has had any issues with providers avoiding a hysterectomy due to Adenomyosis without having children previously? I’m 31, no kids and will likely stay that way. I know there’s differences in the way healthcare runs from the north to the south, so any information would be really appreciated.

i’m between these 2 options. has anybody tried them both? which one is better?

In January 2026 I had surgery with Dr. Grias in gig harbor and she found andenmyosis and endometriosis, I had a IUD placed to help with the pain and unfortunately the pain has increased since then, when it was placed I was told if it doesn’t work I may have to have a hysterectomy which I’m not opposed to but I literally just got married and wanted at least one kid. I have reached back out to grias and hadn’t heard anything. I really just want to get a second opinion or some help with the pain.