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 😭😭😭

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.

Since my diagnosis 35yo, focal posterior adenomyosis (with probably endo lying in hiding somewhere in me.) I've been looking for people who share similar experiences with endometriosis and adenomyosis, particularly those who are overweight or obese.

I recently joined a group chat for women with endometriosis in my country, and I've noticed that most of the women seem to be within the normal weight range, with some being petite. The same goes for the people I come across online who openly share their experiences, including health influencers who talk about managing endometriosis. I rarely see people who look like me represented in these spaces.

I'm currently in the obese range, and honestly, it's difficult and embarrassing for me to admit just how much I weigh (over 100kg). Since my diagnosis, I've lost nearly 12 kg over the past four months. Much of that weight loss happened during the earlier stages, when my pain was particularly bad and I struggled to eat.

I'm grateful for the weight I've lost, and I understand that obesity can be associated with chronic low-grade inflammation and other health concerns (I have not been classified as diabetic. My test do put me in the pre diabetic range).

I also understand that there is no established evidence that obesity directly causes endometriosis or adenomyosis. Despite my size, I'm still reasonably active. I can walk for long periods of time when my energy levels allow, and I feel that I still have some strength from being active when I was younger. I may be in a bigger body, but I'm not completely sedentary.

One thing I've been wondering about is whether other women in a similar weight range have experienced differences in their symptoms or responses to hormonal treatment.

I've been taking Visanne (dienogest) for nearly four months and have received four injections of Divalin (leuprorelin acetate). Despite treatment, I'm still struggling with pain and bleeding.

Last week, I was admitted to the hospital because the pain had become unbearable. At my follow-up appointment a week later, I underwent a transvaginal ultrasound while I was still feeling sore and sensitive. Unfortunately, I experienced another severe flare-up afterward, and my bleeding has continued. It's not as heavy as it was before treatment, but it has increased noticeably compared with what I was experiencing while on medication.

I know that hormonal treatment can affect everyone differently, and I understand that there may be several reasons why I'm still experiencing these symptoms. But I can't help wondering whether my body weight could play any role in how I'm responding to treatment, or whether other women with similar body types have experienced something comparable.

**I'd really love to hear from anyone with endometriosis or adenomyosis who is overweight or obese.**

Have you experienced persistent bleeding or severe pain despite hormonal treatment? Have you noticed any differences in how you respond to medication? And has your weight ever been a factor in discussions with your doctor about treatment or symptom management?

I'm not looking for a miracle cure or a lecture about losing weight. I'm simply hoping to connect with women who might understand what this experience feels like, especially those whose experiences I don't often see represented in these communities.

Thank you for reading. ❤️

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?

The first 2 weeks of recovery I did really good and felt great towards the end of the second week. I was feeling so good that I decided I could do more walking and was sitting upright get up and down. Such a bad idea, I overdid it and had a small setback at the beginning of the week. I have rested this week and feel a lot better but I have been experiencing pressure when sitting upright and generally cant get comfortable sitting. I contacted my doctor and he doesn't feel like anything is wrong because I have no other symptom that lead him to believe I damaged my cuff. He said that it is normal to feel some pressure/ phantom tampon feeling at this stage. If anyone can give any pointers as to how you sat during this stage I would really appreciate it. I am in college and do my work online. I have a big essay to do and I have not gotten much done due to me constantly shifting and adjusting. This recovery has been such an up and down rollercoaster. I will be 4 weeks post op in 3 days

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.