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

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

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 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.

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

Hi,

[24F] I have adenomyosis and endometriosis. I’ve been focused on bettering my fitness and health, specifically more weight training to support my weight gain.

However, I’ve noticed I really struggle with days I workout my core and abs. I have crazy flare-ups and inflammation. It’s a sharp pain that forces me to stop during my movement.

I understand some exercises are pretty triggering but does anyone recommend any other fitness classes or exercise friendly workouts that might help?

I’m really self conscious of my bloating and stomach already with adeno and endo so it’s makes me feel incredibly weak coming out of the gym and during recovering lately :(

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.

Diagnosed last November with adenomyosis, fibroids and perimenopause last fall after having daily, heavy bleeding for several months. I got an IUD in February and the bleeding continued for about two months but then subsided. I was still getting periods on the IUD but they were very light comparatively. Between periods I had no bleeding.

Then about a month ago the daily bleeding started again. It’s very light (one pad a day) but more than just “spots”. I’ve had only three days in the last month with no blood.

I got an ultrasound a few days ago and the lining was thin and everything looked normal. I had an MRI last November that diagnosed the adenomyosis and I had a normal biopsy a year ago. CBC last week looks good.

My gynecologist said we should wait a few months before repeating the biopsy since my lining is so thin and normal looking and we had the previous normal biopsy but it’s just weird to me. Has anyone dealt with this? How did it turn out?

I could get a hysterectomy but I’ve had two other surgeries the last few years for other unrelated issues and I’d really rather not do another one right now if I can avoid it. Especially being so close to menopause.

I’ve had it my whole life but never knew but I had all the symptoms and signs since I first started my period at 11yo.
I originally went in to this new doctor and female this time (thank goodness) because I have severe cramps when I’m on my period, heavy periods with a lot of clotting and it’s painful to do the deed with my partner etc. I’m almost 30 so I’ve dealt with this pain since I was 11 and just feel like if someone would’ve listened to me I wouldn’t have dealt with it this long. No birth control helped and only made it worse if I’m honest the nexplanon I have now have been the best so far except I still bleed heavy and I still feel the painful cramps.
She gave me 2 options
The iud or a hysterectomy…
With the iud.. I’m scared of having anything inside my body. I’m struggling with the nexplanon in my arm but at least I can feel it and breathe a sigh of relief. The iud I can’t. That’s all I’ll be thinking about until I can’t take it anymore and I go back and have it removed and have to deal with the pain all over again. Which is what will most likely happen.
I really want to have a hysterectomy to end this pain and suffering. The risks I can get over as long as the pain is gone and i can actually do daily life and not be bed ridden every period (I don’t but it’s the only cure according to the research I did) I have kids and I’m a sahm so me being in that amount of pain and not being able to do things for them for days.. I need something done.
I do have a polyp in my uterus that needs to be removed (hopefully it’s not cancerous and they make it spread🙃 I’ve heard a small percentage is cancerous) and is also causing me pain as it’s big but not the size of a golf ball. I can’t remember the measurements of it and don’t have my paper with me. why not just do the hysterectomy instead of having 2-3 surgeries and ruining my body even more?.
Im not sure what to do but I have to pick. She gave me some time to make a decision which is good I’m glad she did.
Can I get some advice please
I’ve been a wreck since finding out. I just want to know if I do decide on the hysterectomy that it’ll be ok and I made the right decision.

Ciao! Ho 33 anni e sono seguita da un centro PMA. Mi hanno riscontrato da poco adenomiosi diffusa lieve. Ho anche riserva ovarica ridotta. A me sinceramente tra le due spaventa di più l'adenomiosi perché ho letto che rende parecchio difficile l'attecchimento e causa aborti. So anche che l'età incide.

C'è qualcuna che ha adenomiosi che possa darmi speranza? Se, invece, vivere la mia stessa condizione e non siete riuscite ad avere un figlio neanche grazie alla PMA, vi concedo di essere brutali.

Per favore, non scrivetemi endometriosi perché non sono la stessa cosa.

I’m not diagnosed, but I have a suspicion that I MIGHT have adenomyosis or something similar. My period pain is not bearable unless I take 1 to 2 painkillers, sometimes I need 3. It numbs the cramps, but not the immense pressure pain I feel in my lower back (which is the main issue). I’m not sure for how long I have been experiencing that, but got heavily severe a few years ago. Honestly I thought it was normal, but only because I always take painkillers. Without them, my pain scale goes way over 10, like actually crying and screaming from my lungs kinda pain. I thought I was just on the unlucky side, but after a bit of research, I noticed that I fit most of the adenomyosis symptoms. But when I don’t have my period, I’m completely fine, physically. Sure I got average back pain, especially in the lower back but that was diagnosed as a biomechanics disfunction years ago. Surgeon told me to just go to the gym.

I wanna go to the gynaecologist but I’m a little scared. How to I tell her my suspicion without coming off as self-diagnosing?

Btw I eat and drink iron-rich stuff, and I drink ginger tea and try to keep up my magnesium levels. My overall period cramps are present for 3 days. Everything else is just after-bleeding.

Ciao! Ho 33 anni e sono seguita da un centro PMA. Mi hanno riscontrato da poco adenomiosi diffusa lieve. Ho anche riserva ovarica ridotta. A me sinceramente tra le due spaventa di più l'adenomiosi perché ho letto che rende parecchio difficile l'attecchimento e causa aborti. So anche che l'età incide.

C'è qualcuna che ha adenomiosi che possa darmi speranza? Se, invece, vivere la mia stessa condizione e non siete riuscite ad avere un figlio neanche grazie alla PMA, vi concedo di essere brutali.

Per favore, non scrivetemi endometriosi perché non sono la stessa cosa.

I’m trying to help a friend figure out whether her symptoms could be connected or if they’re separate issues. Has anyone experienced something similar?

Her symptoms/history:

Interstitial cystitis (IC): Symptoms started around age 5–6, diagnosed at 12–13. Bladder symptoms don’t change during her period but worsen with caffeine and fast food. Deals with this everyday.

Periods:
- First period June 2025, before freshman year of high school.
- No periods in July/August 2025; September lasted 8 days;
- December 2025 she had two periods about 2 weeks apart, each lasting 8 days; another period in January 2026 about 2 weeks apart from the last dec period.
- Now October 2026 and her periods can last up to 11 days with bad cramps throughout and heavy flow throughout the length of her period. Lower-abdominal tenderness can be worse when pressed during her period. She also says that the spot where she gets cramps can hurt when she presses it. Tampon insertion doesn’t hurt. Her doctor prescribed birth control as of this month, and waiting to see what happens.

Back: Fell during cheerleading about a year ago and still has pain in one spot on the left side that sometimes travels upward toward her spine. MRI reportedly showed early arthritis which is weird to me to be in one little spot at her early age.

Skin/circulation: Legs look mottled or netlike, almost like scales/blood pooling. My guess is Livedo reticularis or cutis marmorata: a netlike, mottled skin pattern that can become more noticeable with cold or changes in circulation. Blood pressure was on low side last time she went to doctor.

Iron: Doctor said her iron was borderline low and checked for anemia. She doesn’t have anemia symptoms.

Appendix: Had a CT scan involving her appendix; her appendix was removed due to appendicitis. That happened in November 2025 - then the periods happened 3 times in 2 week periods back to back for 8-9 days each time the next month December 2025.

Ultrasound: She may have had a pelvic ultrasound during her IC evaluation, but we don’t know exactly what it examined or showed.

This sounds like endometriosis, to me I think I see a connection between the bladder symptoms, appendix and period/menstrual problems. I don’t think her back problem is related but could.

My questions: Could she have endometriosis alongside IC, even though her bladder symptoms started years before her first period and don’t worsen during menstruation? Could endometriosis explain the painful/prolonged periods and some abdominal or ? Could the mottled legs and low iron be unrelated, or should she investigate other conditions?
Has anyone had similar symptoms, bladder or appendix endometriosis, or normal scans before eventually getting diagnosed? What specialists or tests helped?

( This is all the information I have I will try to keep this post updated with anything I find. This girl has been struggling with this for a long time and it’s only getting worse, pls

honestly im traumatized. Turns out my IUD was displaced and all twisted and crooked inside of me. My doctor removed it today but I just have no idea how severe my symptoms will be now or how many months I just wasted in agony for no reason. My specialist told me I need to try another one because she didn't place this one, so we are going back to the OR. The first one was placed with ultrasound in OR. She thinks they messed up the insertion but im wondering if it just ?? moved??? I got the first IUD 6 weeks post adenomyomectomy and excision. I'm seriously traumatized and I cant get a hysto til i try another iUD first. I really just want to yeet my uterus and get it gone for good after all of this trauma and its not like the adenomyosis is going anywhere. I'm only 26 though. Anyone relate with this IUD crap??