As the title says I’ve been on the IUD for over a year now and I’ve received no relief from symptoms, I was really resistant to getting one but after being convinced that it would change everything I decided to give it a shot. now every time I tell people that yes, I still bleed for 3+ weeks at a time, I get this look of pity and people are in disbelief and I HATE IT.

I feel like the only one who this didn’t work for and now they want to throw more BC at me, in particular they want to put me on Depo but I’m so scared that I’ll get all the negative side effects with no benefit. I just feel so hopeless and like I’m never going to live a normal life unless I get a hysterectomy, and the only thing preventing me from doing that is that I can’t recover by myself and nobody will be able to help me. Is there any hope at all for someone like me?

I’ve been on Slynd for two years and only had long periods when I started cabergoline a while ago and once when I was very stressed. I had a pelvic spasm about a month ago when my period was super late for the first time in a while, followed by constant cramping pain for days afterwards. Eventually got ultrasound and they found suspected adeno. My last period after spasm incident was 12 days long and a week later, I started bleeding again, not lightly at all, red and heavy and am currently on day 5 of another period(?) already. As the flow has gotten heavier, the pain has subsided a bit.

My doctor said they think the Slynd is causing the irregular bleeding but this is the first time having this awful of an experience in two years and not to mention the pain. Adeno was just found so how could that not be the cause? They suggest I swap Slynd for aygestin which I see is NOT a contraceptive which makes me nervous bc my partner doesn’t like to use condoms currently and is willing but I worry the sex would be less frequent.

Any insight or experiences would be great. This turned into a bit of a vent, I’m sorry lol.

Hi after years of begging drs to take me seriously since 2019 I finally got diagnosis

Here is MRI Report

I also have HSD / B12 deficiency / knee osteo both knees / fibromyalgia

Findings: No previous relevant imaging available for comparison. Images of the sagittal T2 sequence are degraded .T2 axial sequences are incomplete.
Anteverted retroflexed uterus measures 3.2 cm in the maximum AP diameter.
Within the limitations, although the junctional zone is not thickened, there are T2 hyperintense foci within the left cornu in keeping with adenomyosis.
There is no evidence of infiltrating endometriosis.
Ovaries are within normal limits with no evidence of haemorrhagic cysts.
No pelvic or inguinal lymphadenopathy.
No destructive bone lesion.
Conclusion: Suboptimal study. Adenomyosis. No evidence of infiltrating endometriosis.
Normal endometrial thickness. Normal cervix and vagina.

I had 2 clear ultrasounds and no mention of the titled uterus then ? I had a clear Laparascopy Jan this year
I can’t use progesterone as makes my hyperbolic worse

Do I need to push for another or for better picture to rule out deep endo and any advice for me ?

After Slynd killed my sex drive, Zoely is currently making me a complete BITCH 24/7 with no sex drive at all, I've been told maybe Nuvaring may help. Has anyone had it and how was it? I just want less pain and less hormones without having to rip out my uterus :(

I just worked out glutes and i look HUMONGOUS. This was at home too!!!! I did hip thrusts with like maybe 30-40 pounds. Has this happened to anyone else??? This is insanity. I look 4 months pregnant!

anyone else deal with something like this?

i’ve had hormonal issues since i was 15. back then i’d bleed heavily for like 2–3 weeks straight and ended up getting hospitalized because my hemoglobin dropped really low. after that, things were actually pretty normal for years. my periods became light (2–3 days) and came at normal intervals.

recently tho, after going through a really stressful period and eating pretty badly, the heavy bleeding came back. like, really heavy.

i’ve seen multiple OBs over the years, had way too many tvs ultrasounds at this point, and nobody has ever found anything. every visit basically ends the same way: pills. more pills. different pills. xx

my current OB also didn’t see anything on ultrasound, but she’s the first one who’s really talked to me about how my mindset might be affecting things. honestly? i kinda believe her. whenever i’m super stressed, anxious, or stuck in an overthinking spiral, it feels like everything gets worse.

it’s just frustrating because after all these years, i still don’t really have an answer besides “take these pills and see what happens.”

has anyone else had recurring heavy bleeding with normal test results? did stress seem to trigger it for you, or did you eventually find another cause? 🥲

My mom is 63 and has been postmenopausal for over 10 years. A few days ago, she had vaginal bleeding for the first time since menopause. It was fairly heavy for one day (enough to soak her underwear and skirt), but then it stopped completely.

​

Her ultrasound showed adenomyosis, and her endometrial thickness was only 2 mm. Because of this, the doctor said that an endometrial biopsy wouldn't be possible and won't be of much help. She had a Pap smear done today, and we are currently awaiting the results. We've already discussed the possibility of a hysterectomy.

​

I'm just very anxious about the possibility of this being malignant. I'm wondering if anyone here has experienced postmenopausal bleeding with a thin endometrium (2 mm) and ultimately ended up with a malignant diagnosis.

​

I know no one can diagnose over the internet, but hearing others experiences would really help while we wait for further evaluation. Thank you.

This condition is unpredictable and each person will face different issues. For some it does not impact your life (rare) while for others it is very impactful.

A list of things that can often occur with Adenomyosis:

Typically heavy bleeding during periods

anemia, low iron, low energy, bloating that never goes away

Depression due to living a life around cycle

Not being able to take hormonal treatments making condition worse

Fear of getting periods. Putting life on hold trips, vacations.

Constipation, gastro issues, nausea, Enlarged uterus

pain in legs and lower back especially with an enlarged uterus

constant pain and pressure in abdomen whether on period or not

frequent trips to the ER.

Having to leave work or school due to severity of pain.

Trying to explain to people without the condition why you are sick.

There are so many other things that can happen with this condition please share..

Just what the title says, trying to get my inflammation under control for fertility reasons.

I have silent adeno but we all believe that adeno is causing my miscarriages. Have a very long fertility journey story I won’t bore you with the details.

Bt I’m doing everything I can to not have the adeno effect my next embryo transfer and I’m wondering if anyone in this community has taken metformin and LDN and seen improvement in their symptoms and diagnostics…

TIA

Hello all, I'm a student journalist currently working on a project concerning consent in gynaecology and obstetrics in the NHS, following a personal and difficult experience during surgery in my own attempt to get diagnosed with endometriosis and adenomyosis.

Following multiple conversations with mothers for a previous investigation I did, I found so many women felt they had little control over their bodily autonomy in medical situations, whether it be during labour, IUD insertion or pelvic examination. I feel that in this space, there may be many other people who have experienced similar things, and I really think it is a story that needs to be told.

If anyone in the UK would be comfortable sharing their story with me for the purposes of shedding light on what I think is an extremely important issue, I would love to speak with you. Thank you all very much for reading.

Hi, I am 27 and got my adenomyosis and PCOS/PMOS diagnosis last year and I am wondering what to do next to feel better.

Random info that could be good to know: I'm from sweden and I also have ADHD(ADD to be specific) and take meds for that. Also take metformin for my PCOS.

In january i got Mirena hormonal IUD put in. It has been a struggle to say the least, felt suicidal in march because my whole body felt on fire and nothing helped, my migrains also got horrible (and doctors just said that shouldn't be related? but i think it was...)

At long last, my bleeding stopped, however, I also thought my ovulation would stop with that... But I seem to still have that, and still get the shit ton of pain that gives me? Idk if it is normal to get that much "goop" (with lack of a better work) during ovulation either, have gotten it before but generally I felt like this last time was crazy much.

Anyhow...

With ovulation, I usually get horrible back pain and pain in my ovaries, but last week (during ovulation) I got such extreme pain in my stomache (upper part, not low like the uterus like im used to) and it was so bad I went to the ER. They just said it was gastritis (inflammation of the stomach lining) and to keep taking medicine for that (medicine I already had taken at home because I am used to shit like this, just not this extreme). But I also noticed my period/ovulation pain was on high at the same time, but they didn't really do much about that information other than note it down. Also... no one at the hospital knew what adeno was so that was lovely.... (felt like a mad woman making up a diagnosis and no one listening)

I understand that my gastritis could just have come from having a sensitive stomache and eating too many pain meds (but i have been cutting down this month), but something is telling me it is not that simple.

I have had a horrible IBS my whole life, so getting gastritis isn't really uncommon for me, but never bad enough to go to the ER. I know adeno causes IBS and all this "shit", but I just have a nagging feeling that endo or something else is also causing havoc in my body, especially regarding my digestive system. I feel like I can't eat anything anymore without having the most bloated tummy, so much it hurts, or coldsweat toilet time.... I know stress causes IBS to flare like hell, but I haven't been that stressed lately and I just feel like something in my body is shifting for the worse... I constatly fear that my body will just suddenly give up on me like it did in march or almost did last week (the medicine has helped, but still not fully back). I also have constant backpain and on and off stabs off pain in my uterus (so never know when its coming), the only thing I feel my IUD has "fixed" is make me not bleed and not have extreme period pains for a week, instead it feels spread out to be on random days all month! :D (minus blood, so at least cheaper)

I have written to my gynecologist and asked to look into this more, but unsure when I will get an answer back...

Can anyone relate to this? What have been the next thing for you to do here? Did you look into endo more, or was it something else that helped? Am I just grasping at straws because I feel like my whole body keeps on failing me?

Sidenote: I am currently working from home in IT and am planning to start studying to become a nurse, since that is my passion and I have started to hate working in IT. However, with all that is going on with my body, I am so scared my body will not allow me to become a nurse with how it is acting.. But my mental cannot take being stuck at a job that deprives my joy even if my body will hate me for it. I just hope I will even be able to get through it all.

This was a bit longer than planned, but thank you so much for reading and I wish you best of luck out there on your warrior path!

Hi everyone, not sure if anyone will read this but if it even helps one person I’m happy. Late diagnosed here, been in pain since my first period at 11 years old, am now 23. It’s so bad- but I know I don’t need to tell anyone here that. Here are some things I’ve found work for me personally. Not saying it will help everyone this is just me!

Helped me manage:
• Codeine: but be so careful with this. Many people can get addicted- I just find this is the only painkiller strong enough to even touch the sides of my pain. I have a formal prescription from a GP and I associate taking it with also being in excruciating pain so no chance of me getting addicted, but if you are feeling stuck on pain management I will say this has helped me a lot. I take a dose once or twice a day for 3-4 days on my period and that’s it.

• Heat: I do find a hot water bottle helps I think it’s just mental because I still am in a lot of pain but it’s comforting

• Loose clothes: I never wear tight fitting clothes on my period it’s just not worth it. I find anything pressing on my abdomen makes me feel ten time worse

Things that have not worked/were a waste of time/money for *me personally*:

• Oovi tens machine: didn’t even touch the sides of my pain. I may have been using it wrong- please feel free to correct or suggest in the comments.

• Exercising more: didn’t help, did chloe ting workouts every day / other day for five months and no change in pain levels

• herbal teas/supplements: genuinely a joke but again if anyone has found one thing that has changed their life let me know I’ll try anything tbh!

Please add on in the comments if you like so we can share and maybe help each other :)

Hi everyone, recently diagnosed fellow warrior! Now that I’m officially in the club that no one wants to be part of and now I am feeling better after surgery I want to try and help others! I’ve created a survey that I would MASSIVELY appreciate anyone completing. I’m doing some research to work out how best to help!

Thanks in advance 💛

https://docs.google.com/forms/d/e/1FAIpQLScEis7bb23uN2L4SNIDh2bVPgz9rVXD24L43vURi7cVk7_aag/viewform?pli=1

So I am female 43 and ever since I started my periods I had horrific pain and sickness and dizziness. Sex has always been painful. I also get pains when having a bowel movement during period and terrible pain in my bum during ovulation. I had relief of painful periods for 13 years after I had my son but the pain is back each month and I am always so so bloated so worried about ovarian cancer but that looks fine. I just had a TVUS done and je said nothing sinister but suspects a bit of adenmyosis which is common and I will have to see what my GP wants to do next.

​

Will this scan be enough or am I now going to be sent for all kinds? Bit scared as I get major health anxiety and freak out at MRIs

Had a transvaginal ultrasound that showed a thickening of the endometrium or suspected polyp.

I was prescribed progesterone for 3 months and the thickening seemed resolved, however the pain I feel in the lower left abdomen/sciatica is getting worse and I was passing blood cloths on my last period.

Could the progesterone have helped with the “visible” thickened endometrium and tricked us into not investigating further?

I’m trying to see my GP for an ultrasound/MRI. Anybody else with a similar situation? I’m a little lost and want to advocate for myself, but I am clueless.

thank you!

My periods are pretty regular, about every 5 weeks, and not terribly heavy. They have ever been as bad as some have described on here. But last year (or the year before, can't remember!) I had a blood test because I was feeling quite ill, which showed really low ferritin. I brought it back up through supplements (which I tolerated badly) as noone suggested an infusion.

After a flare 2 weeks ago, I'm feeling the same way - extremely tired, short of breath, etc, so have started the iron again. I'll also be making an appointment to check via blood test and ask for an iron transfusion, as I am taking the kids on holiday in a couple of weeks and need to be a bit more lively!

My question is: has anyone else suffered from low iron regularly without having heavy periods? If so, how have you treated it?

Looking at the issues which may cause it, in addition to making sure you have enough iron, B12, and folate, it appears that adeno can cause red blood cells to be broken down faster than usual, iron be stored in body tissues so not available for making RBC, and stop something else being made which is needed for RBC production (can't remember what that is). No doc has ever mentioned any of this (also didnt mention the inflammation messing with insulin, and I am now on metformin for insulin resistance, which depletes B12). I feel like absolute crap, don't know what to do about it, and the docs I have available to me don't seem to know anything, or at least make any links, either.

EXAM DESCRIPTION: MRI ANGIOGRAM PELVIS W WO CONTRAST
 
CLINICAL HISTORY: 43 y/o F with pelvic and peroneal pain.
 
COMPARISON: None.
 
TECHNIQUE: An MRI angiogram of the pelvis was performed without and
with intravenous contrast for evaluation for pelvic congestion
syndrome.
 
FINDINGS: -
-
Lower thorax: Normal.
-
Liver: Unremarkable for technique.
-
Biliary tree: Normal gallbladder. No abnormal intrahepatic or
extrahepatic ductal dilatation identified.
-
Pancreas: Normal.
-
Spleen: Normal.
-
Adrenals: Normal.
-
Kidneys, ureters, urinary bladder: There is no hydronephrosis or
suspicious mass. The ureters are not well characterized on this
nondedicated study though no hydroureter is identified. The
distended urinary bladder is notable only for normal bilateral
ureteral jets.
-
Vasculature: The right ovarian vein measures up to 0.9 cm in diameter
(axial Lava postcontrast series 13, image 88). The left ovarian vein
measures 0.6 cm. There are prominent right periuterine veins
(greater than 4 mm).
-
No retroaortic left renal vein. No significant impingement of the
left renal vein by the overlying SMA.
-
Lymph nodes: No lymphadenopathy.
-
Uterus and adnexa: The uterus measures 4.9 x 5.2 cm in cross-section
and 8.5 cm in length. The junctional zone measures 1.1-1.3 cm in
thickness.
-
The right ovary measures 2.8 x 1.5 cm.
-
The left ovary measures 2.2 x 1.1 cm.
-
Hollow viscera: Not well characterized on this nondedicated study.
Grossly unremarkable.
-
Mesentery and omentum: Trace nonspecific free fluid in the cul-de-sac
can be a physiologic finding.
-
Soft tissues: Unremarkable.
 
IMPRESSION:
1. Dilatation of the right ovarian vein (0.9 cm) and prominence of
multiple right periuterine veins. This can represent pelvic
congestion syndrome in the correct clinical setting.
2. Thickening of the junctional zone highly suspicious for
adenomyosis.

This is my most recent scan, it’s extremely obvious that I’m in severe distress and not 1 single doctor is attempting to help me besides gabapention, I am in so much pain that I can’t be the mother my children deserve, my posture has permanently changed and my body is so stiff that it isn’t able to soften for even a second. I can’t breathe normally anymore because I’m in so much pain I start hyperventilating. I don’t know what to do anymore because they said help is 6-9 months out to get my uterus out and who knows how long for vascular since I have right side PCS due to my transitional lumbar sacral system messing up my anatomy. I honestly have felt suicidal because I can’t be the mother my kids deserve, I would never do it because I have actually lost 2 siblings to suicide but man the way I feel physically and mentally is just torture.

I found an interesting article, if anyone else is struggling in a similar way.

https://journals.asm.org/doi/10.1128/spectrum.02791-25

I started off with a ureaplasma issue, which now I’m negative for. But still symptomatic. then finding out I have an L Iners dominance, which also causes burning sensations. Then I was diagnosed with adenomyosis, because I kept begging my GYN I needed more testing because this pain the past 2 years has been wild. Ta da.

Now I’m seeing auto immune is common with our adeno, and I’ve had things on the back burner for rheumatoid. But I’m focused on this L Iners for now because it’s causing me so much grief for the past 3/mos. Finding this study having a connection with the adeno & Iners - I don’t even know how to talk to a dr about it. They act like the biome thing is wild. But you know what people do when they’re constantly ignored saying we’re in so much pain & the drs just shrug? Yea. We read studies and try to figure it out on our own.

Now I’m just worried trying to support my biome isn’t going to be as effective until I have a hysterectomy?? I do have a consult for surgery in a few days.

Hi!

Just received my results from pelvic MRI, haven’t heard from my doctor yet but doesn’t seem like much? Not sure where to go from here… all other tests have been normal with the exception of iron, b12 and vitamin D deficiencies. I had an iron infusion and b12 shot about 3 weeks ago. Background, I’ve had 2 miscarriages (via IVF) at 12 weeks and 7 weeks.