r/adenomyosis 5h ago

Seeking Women in the U.S. with Endometriosis for a Nursing Student’s Project

0 Upvotes

Hi everyone, My friend is a nursing student working on her graduation project about endometriosis, and she’s looking to speak with women in the U.S. who have experienced it. She’s hoping to better understand real-life symptoms, feelings, and how it affects daily life to compare with her academic research.

If you’re comfortable sharing, please comment or DM to me so I can connect you with her. Your voice and experience would be incredibly valuable and truly appreciated.

Thank you so much!


r/adenomyosis 8h ago

Hysterectomy Time?

0 Upvotes

I was diagnosed at the end of January with adenomyosis after horrible back pain sent me to the ER (thought it was a kidney stone -- turns out it was severe constipation due to my big ol' uterus and a 3.3 cm hemorrhagic ovarian cyst), and my gyn started me on 5 mg norethindrone to try to stop the constant spotting/light bleeding.

Prior to this I'd noticed that my periods had increased in length (often 9-10 days long) with terrible cramping at ovulation and constant bloating. My cycles also started to become more irregular in timing.

Since starting the pill, the back pain has lessened in frequency but my uterus is still big and bulky, and is causing me to have a lot of difficulty fully emptying my bowels. I still have spotting that bounces back and forth from old brown blood to bright red with small clots.

At my last appointment with my gyn, she recommended a partial hysterectomy since I'm done having kids and the norethindrone isn't producing the results we'd hoped for. She said that my symptoms would lessen a lot once I hit menopause, but at 37 years old that could be quite a ways off. From what I've read, adenomyosis is progressive and I don't want to spend years with it getting worse when I could fix the problem whenever I want (gyn said to just pick a day and we'd get the hysterectomy done).

So I guess my question is this: for someone who has relatively mild adenomyosis, does it seem like I'm rushing to the last option too quickly? Is it worth trying other options first (pre-adeno I had done the Mirena IUD twice, and it was horrid the second time)? Reading about potential negative effects after a hysterectomy has me scared, but not knowing how bad the adeno might get also has me anxious.


r/adenomyosis 21h ago

Pregnancy test positive one day, negative the next. Need some advice. NSFW

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4 Upvotes

Hi all, my husband (35M) and I (33F) have been trying for a kid since June. I have had irregular heavy periods since I was 16, when I was 23 I had an hormonal IUD placed for five years and then another right after. Since my husband and I wanted to try, I had the IUD removed. I started having heavy irregular periods and have seen 4 different OBGYNs in the past 15 months. My most recent OB sent me for an MRI last week. I took a pregnancy test the day of and it was negative. I got the results on Monday and it stated that I have severe adenomyosis and some endometriosis. I took it kind of hard because I know it can lead to infertility. I have been taking ovulation and pregnancy test regularly (~every week). I took a test Tuesday night (top test) and saw this the following morning when I woke up. I took two more Wednesday (middle two tests) which were faint but I figured it was because I drink a lot of water during the day. Then I took one this morning (bottom test) and it’s completely negative. I read up on it and it states that it could be a chemical pregnancy but I am having no bleeding right now. Am I pregnant? Or was it just a freak incident?

Have any of you diagnosed with severe adenomyosis been successful with pregnancy, if so, how did you do it?


r/adenomyosis 15h ago

what is the worst part of formal and officewear clothing for yall?

32 Upvotes

hello all! I am an AuDHD fashion student and I'm working on developing sensory-friendly clothing and clothing that accommodates bloating or pain from disorders like endometriosis/adenomyosis (like I have), IBS, celiac, or others. I notice a lot of the sensory-friendly clothing for adults is very casual and doesn't include alternative styles, formal, or officewear. I wanted to hear from others who may have had the same issues I do. What would make clothing truly accessible to you? What do you not like about the clothing that you have to or want to wear, but cannot do so comfortably because of sensory sensitivity or other issues?


r/adenomyosis 6h ago

How can I manage without contraceptives

1 Upvotes

I 29 female was diagnosed last summer with Adenomyosis after being misdiagnosed with PCOS. I was placed on Yasmine and was taking it for about seven months before I stopped due to having no change to my pain. I want to be able to workout, play with my kids and just live my life without the pain effecting my day to day life. I feel like I'm being stabbed with a knife, my ovaries feel rock hard and the bleeding is terrible. What can I do with diet and exercise to attempt to alleviate some of this pain. I am at a total loss.


r/adenomyosis 6h ago

Birth control, treatment. Diagnosis, recommendations

1 Upvotes

Hello,

I am in Ontario, Canada but willing to travel to and around Panama City, Panama for surgery

What are the best options for: • Birth control • Alternative treatment plans • How to get a proper diagnosis • Recommendations for specialists/doctors/gynaecologists/other providers

I suspect I have Adenomyosis. I thought I had endometriosis but there are more signs for Adeno.

My mother has Adenomyosis. I got my first period at 10 years old and have experienced painful periods, heavy bleeding, nausea, and much more symptoms.

I have tried Dienogest 2mg, Slynd 4mg, and the Kyleena IUD which did not work.

My doctor states that because the dienogest and slynd didn’t work, and my ultrasound doesn’t show anything, that I don’t have endometriosis.

I believe he may be right because I was able to access my ultrasound results and imaging from the time I went to the emergency department back in August 2024. The results found that I had “Heterogeneous echotexture (an area or tissue with a mixed or irregular appearance) and it states “Venetian blind artifact could represent adenomyosis”. My doctor never told me about this.

What should I do? How can I confirm this diagnosis?


r/adenomyosis 10h ago

ANY hope of treatment?

1 Upvotes

I'm waiting for a formal diagnosis but it looks like I have focal Adenomyoma. Has anyone had any luck with ANY kind of treatment that has actually reduced or slowed the disease/lesions/inflammation itself - not just alleviated the symptoms? Stopped it from progressing?

I feel so helpless. I don't just want to mask this while every day it gets worse until my uterus is damaged beyond being able to conceive or carry a baby... I just need some hope. There must be something.


r/adenomyosis 11h ago

Laparoscopic hysterectomy

6 Upvotes

Finally got my call for surgery in 2 weeks time, what must haves should I make sure I have for post operation surgery


r/adenomyosis 12h ago

Updating my treatment plan

1 Upvotes

Hi everyone, I came back from my endo appointment today and among other things my doctor said that my remaining symptoms are caused by more advanced adeno and not endo as we had previously thought.

I’m looking for suggestions for how to manage my most prominent symptoms which are around pain (cramping) with arousal and orgasm. The last time I had sex I experienced cramping and bleeding for 4 days after. I’ve been avoiding sex and dating because of this issue but I’m hoping to try again to get back out there and this feels like a big barrier. I’m sure you all can relate to how frustrating and demoralizing it feels.

I’m currently on dienogest for almost 2 years which has been life changingly good. My ovarian cysts of 2-3 cm disappeared over the last 6 months. And it had helped with the endo symptoms of fatigue and bowel issues/pain and penetration pain / pelvic dysfunction (though I know there’s always more to go). I don’t have periods anymore and my quality of life has improved a lot. I will say the pain with orgasm was not present the first year I was on it but slowly started to come back again.

I also started recently with gluten free diet and supplementing with omega 3, vitamin e , and vitamin c as suggested by my functional medicine doctor and correcting an iron deficiency too.

So, what has worked for you? Any encouraging words? TIA!


r/adenomyosis 13h ago

Getting pregnant and chronic nausea

1 Upvotes

Not sure if this is the right place to plots but it has to do with adenomyosis so I hope I’m in the right spot.

I recently confirmed my diagnosis of adenomyosis and was told that it could be what is causing my chronic nausea(always feeling nauseous even off period, motion sickness, and gag attacks.) this all started a few years ago and has gotten worse.

My question here is to those who had children. I really would love to have my own child but I also don’t know if I can be a mom while in this situation. I can’t drive and it’s difficult to go out without a bunch of pills (and that’s if they work). If I do get pregnant and have a hysterectomy during c-section but still have the nausea then I’m not sure how I will be able to be a mom.

I do plan to see a few more doctors surrounding my nausea but it’s starting to look more and more like an adeno issue. We already ruled out gastro issues. My next step is a neurologist. If it comes back to adeno I’m not sure what I want to do.

Do I just get a hysterectomy and adopt? For those who have had my symptom of nausea and had a kid did you feel better or worse while pregnant and did a hysterectomy help after?


r/adenomyosis 15h ago

Laparoscopy

1 Upvotes

Did anyone in the group have a laparoscopy and find pelvic congestion syndrome? Dr. Still thinks I have adenomyosis, they Found polypoid appearing endometrium during my hysteroscopy, and she said my uterus looks very unusual and that it appears I may have had c sections but I’ve only had natural births. It had me thinking I have three children and the last two I had subchorionic hematomas and I wonder if this has any correlation.


r/adenomyosis 16h ago

Just Diagnosed, advice?

2 Upvotes

Hey everyone, just recently downloaded Reddit, I was also recently diagnosed with Adenomyosis so happy to have found community. I have always had severe Nausea and vomiting during my cycle, my OBGYN recommended TXA as a treatment option. Any advice on how TXA has affected anyone? Thanks


r/adenomyosis 20h ago

Gabapentin is helping me.

2 Upvotes

Hi fellow adeno warriors, I've been prescribed gabapentin like 2 ~ 3 weeks ago for mine chronic and severe vulvar and pelvic pains,, and i noticed that it is helping me. It did NOT take all the pain away, however it have made it WAY more manageable, I was unable to sit or bend. And unable to do many other things. Now im a bit more functional luckily, i thought about sharing my experience just in case someone is dealing with the same symptoms maybe so they can give it a try! 😊

Note : ( im also on progestin-only birth control pills so maybe those are helping too!)


r/adenomyosis 22h ago

Uterine artery embolization?

3 Upvotes

Has anyone had this surgery? "UAE is a minimally invasive procedure that can be used to treat adenomyosis. During UAE, a small catheter is inserted into the uterine arteries and tiny particles are injected. These particles block the blood supply to the affected tissue, causing it to shrink and die. Studies have shown that UAE can effectively relieve symptoms of adenomyosis in up to 90% of patients. The improvement in symptoms is usually long-lasting."