r/adenomyosis

Hello, around December I was diagnosed with adenomyosis and my doctor recommended me to start the pill it’s called Optimizette gé.

Its been around two months since I’ve been taking it everyday in the evening and I’ve missed like once or twice.

It was fine until last week my period started and it hasn’t stopped, it’s not like my usual period it’s not heavy and there is little to no pain but its been going for longer than my normal period.

The problem is I’m going back to my family’s place for the summer and my mom doesn’t know I’m taking the pill because she dosent want me to but I’m 20 now and I decided for myself, I don’t want to tell her because I don’t want more problems.

But now I’m scared my period won’t stop and I won’t be able to get help without telling her until September when I start uni again and I’m alone.

This is more of a rant/realisation than anything else. I just feel like I’ve willing suffered all my menstruating life without real reason.

Context: I have recently been diagnosed with Adenomyosis at 29, no kids and only now understand why I have had excruciating periods most of my life.

The general consensus is that if you have a period you’re healthy and fertile. I’ve never wanted to compromise that as I want children in the future so have always opted out of taking any form of oral contraception. Also, hearing the horrors stories about the side effects etc, I just felt that my regular cycle supported my overall health. However, I have now discovered that me having a period every month has absolutely no benefit and has actually contributed to the worsening of this disease overtime.

I’m just frustrated because I feel as though the time taken to get diagnosed has led to years of monthly pain. Only now can I take real action by finding a contraception to stop my period all together, until I am ready to conceive.
I just hope that with the new advancements in PMOS(PCOS), the same research is being done for Adeno & Endo so we know how to better understand/cope with these diseases.

I was diagnosed with adenomyosis back in February with suspected endo.

I feel like whenever I eat a meal, it feels like my uterus is bulging out and putting pressure in my lower abdomen. The sensation also comes when it feels like there is stool moving through my colon. I'm assuming it's digestion and my ball shaped uterus is making it more noticeable. I already have difficulty with normal bowel movements, which is rare and far in between. I feel full after a regular meal and like I have a bowling ball hanging in my groin.

Hysterectomy on the 20th. Really, really hoping digestion improves after!

Feel like menstrual cramps, is this normal with adenomyosis? Anyone else experience this? If so, what do you do for relief?

How is everyone doing in the months following hysterectomy recovery? Are most back to normal after 6 to 8 weeks? Chores? DIY remodeling around the house? Playing sports? Yard work? Lifting heavy at the gym? Are you doing most things you were doing before by 8 weeks, or is the heavy lifting/bending/twisting restriction longer? Early 40s, it would be a robotic, ovarian sparing hysterectomy. Thanks

I’m 36 and I’ve had periods since I was 11 years old so I know how my body works. I’ve had mild cramps before - no biggie. I’ve had three kids via c section, had surgery to remove a fibroid previously, and we know I have at least two fibroids right now.

In April, I got such intense cramping I thought I was going to pass out and had to drive to urgent care. They gave me ibuprofen and said it was a rough period lol. I saw my OB, a new one, and immediately she said she suspects adenomyosis. I go Monday for a hysterosonogram. Nervous! I also found out that it will rule out other conditions but not confirm adeno!

Have any of you had fibroids but were later diagnosed with adenomyosis?

Do you only get the intense pain during your period? Mine is SO awful then!

♥️

Adenomyosis + perimenopause here.

I am on 50mg of compounded progesterone. 100mg made me too tired. No estrogen (yet).

My bleeding is crazy. I had an endometrial biopsy that was clear though.

Has anyone has an endometrial ablation? Did it help with bleeding?

By 2018 I got diagnosed with endometriosis, and was under dienogest and leupride alternatively for 3 mts.

It was maintained well. Then I got married, from 2024 we are trying for baby. We couldn't conceive. Then doctor recommended me laprascopy. I underwent that since I had adhesions too. After the procedure the doctor told me they removed most of the cysts and I had a small fibroid which doesn't interrupt so they told me they left it. Still some cysts were there which they didn't remove. After 3 mts of recovery, we tried again with the follicular studies and stimulations still we weren't able to conceive.

Then after a year my husband got diagnosed with bilateral varicocele, which needed a procedure and we underwent that too. After his recovery we tried again, still nothing happened. Then underwent IUI, then IVF all failed.

Then went for 2nd opinion and was told that the fibroid was encroaching the cavity and ovaries are adherent to the uterus. And the doctor suggested to remove the egg and fertilize it then freeze it, during the same we will try to do the surgery to remove the fibroid, adhesions ad cysts as well. And after recovery we'll implant the embryo.

I was convinced with the plan he made, but still my family is scared of multiple procedures on me.

I m really in a dilemma should I seek another opinion or should I go with this doctor's plan itself? Can someone help me, if anyone faced the same or any small info too would help me. If any doctor specialized in this, if here, pls answer. Thanks in advance.

Hello, I am new to the community and just learning.
I found out I had adenomyosis about 8 months ago when trying to find out why I have abdominal pain and pain during intercourse.
I went to see a gyno who told me I also have a polyp in my uterus and we could do a surgery to see if I also have endometriosis.
I decided not to go ahead with this because of life being busy and it not seeming urgent.
In the last few months I’ve been seeing brown blood in between periods. Sometimes it’s weird and stringy (sorry tmi). I feel like I need a trip back to see her if I can get in but has anyone experienced this?

any tips on getting a hysterectomy? like how do i ask my gyno for a hysterectomy? i do not want an iud i just want my uterus gone its been making my life hell. do i have to go to a specialist instead and if so what kind?

Wondering if anyone here first had adeno suspected after having a lap for endo. Did any of you have a clear MRI but then uterus appeared enlarged during lap excision for endo leading to a diagnosis?

Hi, I just wanna to share my own story with adenomyosis/endo.

I have always had extreme period pains(especially the first 24 hours of my cycle). Only gotten worse over time.
I have tried multiple estrogen and progesterone pills and didn’t like the hormones. I eventually got a mirena for local hormones and my body rejected it, so I unfortunately had to get it removed. This left me completely devastated, hopeless and back to the beginning.

On my period i now survive on ibuprofen and paracetamol. It is manageable except for the first day of my period where the pain is absolutely excruciating. 😣

My ultimate challenge is that I have started running and the days leading up to and days after my period, I simply cannot run because of the pain. The pain from running is so unbearable I need to sit down and wait for it to pass. It is about 10 minutes in hell where I want to puke and cry cause it hurts so freaking bad.

I am very curious if anyone have experienced the same? I have a theory that the running makes my uterus contacts and the adenomyosis in my uterus wall is my main factor. Does have any knowledge on this? I am very cerious to know

I’m honestly terrified right now and could really use some support.
For the past 2½–3 years I’ve dealt with abnormal bleeding and prolonged periods. It all seemed to start after my dad passed away. At the time, my doctor said my hormones were all over the place and thought I might have PCOS. I had blood work, vaginal and pelvic ultrasounds, and nothing concerning was found. The one time my bleeding was extremely heavy (I bled for about five months), they found my progesterone was very low, and progesterone treatment stopped the bleeding quickly.
But life happened. I was grieving my dad, trying to survive one of the hardest periods of my life, and then I lost my mom to leukemia a year ago. Looking back, I feel like I neglected my own health because I was just trying to make it through each day.
Now I’m overwhelmed with fear that I waited too long and that I could have something seriously wrong, like uterine cancer. I feel so guilty for not pushing harder to get answers sooner. My biggest fear is not being here for my son. He’s autistic and he needs me, and the thought of something happening to me is consuming me.
Has anyone experienced prolonged or abnormal bleeding that turned out to be hormonal or something non-cancerous? Or has anyone been through a similar situation? I’m seeing a gynecologist, but the waiting and the fear are really getting to me right now.

I had a laparoscopy in December 2025 after waiting 3 years on the NHS. I was so desperate to find out what was going on internally that I just accepted the surgery date with a General Surgeon (Not gynaecology Surgeon or Endo Specialist, I actually despair looking back, I cry most nights for being this stupid) and they found nothing. They removed a 15x12 cyst and that was it. I didn’t get any follow up or anything, just a quick chat post surgery and I haven’t heard from my Gynaecologist since aside from a courtesy message about a month after asking about how I’m getting on with recovery etc.

I’ve actually gotten worse since the procedure. My symptoms are as follows.

- Constant pelvic pain and cramping, dull continuous, zero break from it, varies from dull and there in the background to absolute agony, can’t walk or move, spreads to my back, groin and legs and hips.
- Relentless nausea, I’ve lost so much weight I’m now underweight. Zero pleasure in food anymore, everything tastes either horrendous or not worth the bloating after.
- Constant bloating, barely fit in any of my pants anymore. Often mistook for pregnant.
- Can’t have sex at all, will bleed for weeks on end after.
- Bladder pain, dull and achey. Not constant but continuous if I’m actively on my period.
- Rectal pain, bleed constantly from here also, blood in my stools on my period without fail. Severe constipation when I’m bleeding, 7/10 of the time I have to manually remove my stool otherwise I genuinely cannot go.
- Seriously long periods. I’ve been on my current period for 20 days. Full fresh bleed btw.
- Heavy huge clots and also sometimes disgusting chunks of tissue. Sometimes I wipe and it legitimately looks like flesh, it’s often grey and sometimes hard and firm.
- Extreme fatigue. It’s gotten so bad they thought I had Narcolepsy. Turns out I don’t but I’ve been diagnosed with Idiopathic Hypersomnia. Can’t work full time due to this. When I’m actively on my period I can regularly sleep for 14/15 hours, fall asleep at my desk, during the day etc.
- Depression/Anxiety. I suffered from it since I started my period which I understand sorta, low mood is somewhat normal I suppose but since it’s ramped up I just cannot do anything. Everything causes me pain, stress, worry or embarrassment.

I don’t know what to do anymore. They diagnosed me with IBS early on in this journey before they connected the gynaecology symptoms which I understand but they’ve tested me for a plethora of things and seem adamant it’s not Endometriosis however they never confirm what they actually think it is. I’ve done a smear, done a transvaginal ultrasound, the laparoscopy in December, a colonoscopy (both regular and with contrast), a pill endoscopy to check it’s not related to my transit time. They’ve checked for helibacter, gastritis, chrons, they even did a full STD panel and pregnancy test. I’ve done countless blood tests, they’ve checked for coeliac but everything comes back normal.

Where am I supposed to go next? They shout at me every time I suggest they may have missed it and accuse me of wanting Endometriosis and when I’ve raised the possibility of Adenomyosis they say unlikely without Endometriosis.

It’s ruining my life in ways I’m genuinely struggling to cope with for much longer. I’m under the crisis team at my GP due to how depressed I am as a result of my health and not being able to work but I genuinely don’t know how much longer I can cope with the symptoms. I’ve asked if they can do a hysterectomy but they’ve said no, I’m too young (I turned 28 in December).

I’m at my wits end. What more can I possibly ask them to do? I’m in the UK. South East England to be specific.

Hi Reddit friends! I finally got some kind of confirmation of adenomyosis (outside of post surgical pathology ) with an MRI that showed my uterine junctional zone at 15mm. Recent trans vag sono showed uterine volume at 181.5 ml. Retroverted uterus.

I have all the classic symptoms and dealing with now chronic pain and ibs symptoms, too.

Really considering hysterectomy, so I saw a great obgyn, but he said its not advised as much, but totally up to me if I want to keep my cervix (for me its for improved potential sexual function and ligament support etc). Anyhow-- he said if I want minimally invasive I can't keep cervix as morcellation is no longer the standard of care due to small, but potential cancer spread risk. So it would be an open abdominal surgery with 2 night hospital stay. I was surprised to hear this. Has anyone else heard this? He comes highly regarded by family and friends and I felt very comfortable with him,so I'm just wondering!

Partly considering alternative options like an iud, as I've already had 2 major abdominal surgeries. ;) I have 5 kids, too, for context.

Thanks! :)

I don’t want a hysterectomy and I’ve tried slinda/slynd and Zoely but both made me miserable and talked my sex drive. Zoely has turned me into an emotional monster bitch on top of it. My dr is pushing for an iud or implanon but I’m so scared they’ll give me hardcore shitty side effects too. I just want to stop the periods! The pain is unbearable.
What birth control helped you?

Hi everyone,
I had an ultrasound 1.5 years ago and was suspected of having Adenomyosis and enlarged uterus. Also found 2 fibroids outside my uterine wall. I am constantly bleeding and passing clots. This has really impeded my quality of life including my sex life. I initially saw an NP for this and was basically told there was nothing more to do other than Mirena or remove the uterus. I’m currently 49 and in perimenopause. I basically did nothing hoping maybe it will just improve on it’s own. Well no surprise it hasn’t. It’s now been 1.5 years of just dealing with it. However I am no anemic, ferritin is low and I’ve come to the realization that if I don’t do anything to address the bleeding than it will be at the detriment of my overall health. I went to an OB/GYN for a consultation today and tomorrow I have a pelvic ultrasound again. The OBGYN mentioned possibly doing a Uterine Biopsy to make sure it’s not cancer. She also said the only solution to stop the bleeding is the Mirena IUD. I asked her why not just do HRT since I’m in Peri-menopause and she said that’s a totally separate thing and not used for Adeno. She says HRT consists of Estrogen and Progrsterone and therefore the Estrogen will make the Adeno worse. She said it’s used for women with a lot of menopause symptoms like hot flashes and insomnia. She seemed annoyed that I even brought it up.

Has anyone here gotten any other options other than an IUD?? I never did well on birth control and stopped it in my 20s. I also don’t want to stop my periods, which is what an IUD apparently does. Help! I’m so confused. There has to be something other than an IUD?? What about addressing the root cause of Adeno? Not just managing symptoms? Need advice. Also the uterine biopsy kind of scares me. Sounds painful!!

I've had adenomyosis for years. Currently in my 30s. Every period is a nightmare. My uterus is very enlarged, I bleed heavily, and most months I end up needing IV painkillers just to survive it.

I really don't want a hysterectomy, but my doctor said that pregnancy can sometimes make adenomyosis better afterward.

Is that actually true, or is it one of those things people just say? Has anyone here with severe adenomyosis noticed any improvement after having a baby? Or did nothing change?

Just looking to hear real experiences because I'm feeling a bit lost.

Hi, I developed Quervain in my last trim of my pregnancy. So it wasnt because of the way I carried my baby (it was there already before), but I may have gotten worse yes.

It was related to the pregnancy hormones and it got better when I stopt breastfeeding. I had it for 2 years and had to have two Corticosteroid injections which made the pain finally go away.

Could it be linked to adeno or endo? Are there more women here who have had the same pain? And what did help?

Hi all, I had my first consult with a MIGS surgeon today, and after listening to my symptoms (heavy periods, chronic pelvic pain, pain with sex, etc.), along with a previous ultrasound that indicated possible adenomyosis, she thinks I have endometriosis and adenomyosis. I’ve been on norethindrone 5mg for about 6 months now; and I have no period, but still intense stabbing and pressure in my pelvis. The surgeon gave me the options of excision and insertion of IUD to help treat the adenomyosis, or skipping IUD altogether and doing a hysterectomy at the same time as the endo excision. I was wondering if you all were faced with the same choice, and what path you all went down? I’m 26 and pretty set on not having kids, so I’m okay with a hysterectomy, but I wouldn’t mind avoiding a hysterectomy if an IUD would sufficiently address my pelvic pain. It seems to me that an IUD may only be a temporary bandaid, and I would still need a hysterectomy later down the line. Any advice that you can give me on what path to go down would be great!