r/adenomyosis

Tomorrow is the day and I can't wait!!! 45 years old and excited for relief from this torture I've endured for years.

Years of this destroying my life with adenomiosis filling inside of it and elsewhere. I say goodbye from Giving me just 5-7 days a month to feel half normal and able to do things or go places.

I want my life back and it's on the horizon my friends....

My doctor finally okayed me for the surgery, I have so much pain ofc. I cannot handle birth control, partly why I've gone to this. It gets completely impossible for me to function on it, and it gives me hives. (Have been diagnosed bipolar, I manage decently without meds as long as I avoid triggers, this being one. I'm sure that has to do with it. The bipolar meds messed me up bad as well) I also see the risks especially at a young age, I don't want kids ofc.

I am scared of hormone imbalance, that's my biggest worry. I already have hormone imbalance, I have PCOS as well. I obviously see the statistics online about up to 33% of ovary failure within years of a partial hysterectomy.

I've been dealing with it for multiple years, I don't know what else to do. Nausea multiple times a week pain almost every day, I can feel the pressure on the rest of my body. Lots of other visits to GI doctors, ruling other things out.

It's very scary seeing all the women saying that they aged 5 years after they had it though, even keeping the ovaries. They saw it on an ultrasound years ago, it's gotten so much worse since then.

I feel like it should be slightly less of a worry because part of adenomyosis is ofc too much estrogen right? Kind of gone to the point that I would rather die than keep dealing with this though, tbh.

Any info would help

Does anyone else suffer with sciatica? I’ve had it severely for weeks now I can hardly walk, and can’t even drive my car because of the pain. Had two trips to a&e in the last two weeks and now my GP is referring me for physio. I just want this pain to go away it’s excruciating.

Feeling so low 😢

Hello everyone, today I finally had an MRI and I was diagnosed with DIE (deep infiltrating endometriosis) and I had my adenomyosis confirmed. I also have a adhesions. I'm only 21 but at least I'm happy that I finally have an answer, as bad as it is.

Sending hugs to anyone who is going through the same thing ❤️

Hi all,

Ia 48 and live in the UK.

I was diagnosed with Adenomyosis a few years ago. I had the Mirena coil 17 months ago.

The Mirena reduced the bleeding significantly but I was still living in constant pain. I say living, you couldn't really describe it as that. I basically spent a year in bed. Anyway I finally got to see a Gynaecologist 5 months ago and she prescribed Prostap ( I think its called Lupron in the US), she also referred me for urgent scans.

So, I’ve been attending the hospital for a 5 minute appointment every month whilst the implant is implanted, have chased up the scans or an assessment by the Dr each month to no avail so I went to my GP last week, she put me on the 2 week pathway and the appointments are today! The extremes of our NHS are wild.

I have an ultrasound and a transvaginal scan. I am dreading it but at the same time I am hopeful that I might get some answers.

I am still bleeding despite medical menopause and the Mirena, although the prostap has given me 10-12 days a month where I feel human, the rest of the time I am just a ball of pain.

I don't know what I am hoping for with these scans, I guess the diagnosis of Adenomyosis just doesn’t seem to fit the levels of destruction or maybe it does but its not taken seriously. I think I need a MRI but will make do for the moment.

Anyway sorry to offload, I am anxious.

Have a good day my adeno sisters. I'm off to trim my bush 😉🙈

I had a total hysterectomy six weeks ago. This was planned and medically necessary. since starting estrogen patches most of my physical symptoms are mild. However My ADHD is off the rails. I’m forgetting basic things and the ADHD paralysis is the worst it has ever been. I don’t currently have a psychologist, but my therapist thinks progesterone might help. It has been shown to help ND patients mental health as well as promoting sleep which has also been a struggle. My Gyno will not prescribe progesterone because I don’t have a uterus.
Has anyone else dealt with this? Did anyone get progesterone? If so how? I am getting desperate.

I have adenomyosis- is this causing anyone else’s lower abdomen to be bloated? And can anyone add any insight if having your uterus removed alleviated this symptom?

Hi gang!
I’m 32F diagnosed with multiple fibroids in November after experiencing persistent pelvic pain, heavy period and horrible cramps.
My doc put me on mifespristone for six months. Got a scan last week that showed no meaningful shrinkage. But scan now shows signs of endo and adhesion of ovaries and backside organs, which explains my chronic constipation and distress before and during menstruation.
Doc advising myomectomy and lapro clearing of endo plus a hysteroscopy. But also says that there’s 50% chance of it coming back. She’s also prescribed some hormonal meds elagolix that can cause hot flashes and loss of bone density before the surgery and also after surgery.
I don’t want to medicate anymore. The six months I was on mifes, I was having hot flashes and losing sleep and my immune system took a big hit. I would choose pelvic pain a few days a month over losing sleep every night.
I want to do the surgery though if that means there’s a 50% chance it will not return.
Anyway wanted to ask if there are other ways to manage fibroids and endo post surgery without medication? Is anyone on elagolix? Is it worth the trouble?
I’m not sure I want to get pregnant so it’s not about protecting my fertility. .

My results say this:

Junctional zone: There is borderline thickening of the junctional zone, best appreciated on the sagittal images which measures up to 1.2 cm (2/25).

It doesn’t sound severe but I’ve been debating a hysterectomy to just be done with periods all together. I do have confirmed deep infiltrating endometriosis and will be getting surgery for that.

Not sure if “borderline thickening” is enough to justify a hysterectomy. Not sure what to do. Any thoughts or anyone else have similar seemingly “mild” findings on their MRI?

I had an early menopause at 42 and need to be on HRT till 51 to protect bones heart etc.

Im now 45 been suffering with pelvic /hip/back pain, bloating and light bleeding for months.

Recent MRI showed enlarged uterus 10x5.5x5cm. 3 small fibroids around 1cm each. No adenomyosis or endometriosis. I don't believe those small fibroids could enlarge uterus to such an extent? Might it be possible I have adenomyosis but it didn't show on MRI?

I got diagnosed about a year ago with Adeno after a lifetime of heavy bleeding and debilitating cramps. I take birth control so that I don't have a cycle, and even then I'm still in pain and spot once or twice a week, granted it was significantly worse prior to the pill. But it feels like it's just slowly getting worse again. And my sex life is just dead.

For the past 2 months or so any sort of penetration is immediately painful. I bleed immediately after if not already during. I get cramps the entire day afterwards, if not for multiple days. Even non-penetration orgasms are just painful afterwards, and I bleed. My partner says it doesn't matter and he loves me no matter what (bless him), but for me its had such an impact on our relationship and my self worth. I'm so afraid to initiate any intimacy because of this, and feel so much guilt and shame about my body.

Would other forms of birth control even make a difference? Is this something other people experience? Is this like a "flare up" or something? Is a hysterectomy the answer? I'm only 24

After suffering for so long, I finally had a hysterectomy last week. My pathology came back and I had an enlarged bulky uterus, fibroids, polyps and Disordered proliferative endometrium.

I feel so many emotions about it, I’m feeling relieved it was really a thing and I wasn’t going crazy. I feel grief for all the losses and infertility I experienced and sad because it’s all so final.

I really can’t wait to never have a period again and feel fully recovered!!

I’m 21 and have suffered from debilitating cramps ever since I got my first period.

It was only recently (thanks to this subreddit!) that I discovered that taking painkillers a few days before my period can help make the cramps less debilitating. Not a single obgyn or doctor I’ve seen in the last 8 years has ever told me anything like that. I usually ended up taking painkillers only when the pain had already become unbearable and was spreading practically everywhere, in fact, they didn't help much.
I’m shocked.

For those of you who take painkillers before your period, have you found that it helps reduce the pain? At least enough to get out of bed and be able to move/walk?

Sometimes my uterus feels physically “angry” for lack of a better word 😭 Like swollen, reactive and inflamed even when I’m nowhere near my period. I’m struggling to explain this properly but wondering if others with adenomyosis relate?

This was the measurement from my ultrasound. To me this seems enlarged but I was told it was normal.
Am i crazy? My periods are so heavy and painful

11.1 × 5.0 × 6.7 cm

Help! Idk what to do.. please read all:

Today I went in for a consult on my Adenomyosis and Pelvic Congestion Syndrome. Due to having a grade 1 cystocele prolapse, she wants me to get a Uterine Artery Embolization first - she believes my symptoms could be because of the blood pooling in the veins outside my uterus. And that if I got a hysterectomy, it could shift my prolapse and make it worse.

I was hoping for the hysterectomy altogether and be done with this all. But she scared me enough I’m thinking of doing the Uterine Artery Embolization first… lol

INPUT/ADVICE PLEASE 🙃🙃🙃

Ultrasound showed adenmyosis(suspected)

MRI did not? any idea..?

I was recently diagnosed, and have noticed in the same time frame as my recent flare that led to diagnosis, my ability to full orgasm has dwindled. It's like I can feel my body contracting and trying to orgasm, but it's stuck almost, feels heavy and lodged? Does that make sense or sound familiar? Are these classified as uterine orgasms and how are they affected if you get a hysta? Also, for like over 15 years now, I have terrible sciatica like pain when orgasming, like my hip socket if at a certain angle gets stuck, is any of this related? I thought for years it was just sciatica!? My bloating and fatigue, plus leg and joint pain are unreal these days. what a ruse, no pun intended!

I can physically feel my uterus during flare ups now. Like there’s this heavy inflamed pressure sitting deep in my pelvis and lower back all the time. Has anyone else experienced this with adenomyosis?