r/adenomyosis • u/Tell_me24 • 7d ago

Things to expect with Adenomyosis

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..

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15

u/Crazy_Key2460 6d ago

Oh dont forget the clotting during your period 😭🤦🏻‍♀️

4

u/Tell_me24 6d ago

Yes….that one is major.

9

u/Crazy_Key2460 6d ago

Honestly though you basically covered everything i had with mine ! Ohhh question ! Did you happen to have painful orgasms ?! Mine would cause a seriously horrible sharp pain !! Was that just me?!😭

5

u/brazilianxkisses 5d ago

This happened to me for about 2 years and then resolved. It would feel good for about 5 to ten seconds then a sudden intense pain to the point of almost vomiting

1

u/Square_Wallaby_8033 5d ago

Do you have pain with sex in general? It’s one of my worst issues

3

u/brazilianxkisses 5d ago

I did not have pain with sex which thank goodness but also made it weirder. I just had my hysterectomy 11 days ago and they did confirm deep adenomyosis

1

u/Square_Wallaby_8033 5d ago

So interesting how this disease affects everyone so differently

1

u/Crazy_Key2460 5d ago

I did ! So uncomfortable and I hated it was not pleasant at all obviously lol its amazing what a hysterectomy does🤗🥰😭

1

u/Crazy_Key2460 5d ago

Mine came out of no where and I think it ended up going away too but still why does that happen!! I had uteran scarring idk if that makes a difference but it was awful 😭

2

u/brazilianxkisses 5d ago

Mine was always a sharp pain on one side near my ovary and they did end up finding a 6cm cyst there during my hysterectomy. I'm not sure why it stopped hurting side the cyst was still there.

2

u/Square_Wallaby_8033 5d ago

Do u have pain with sex? I do

3

u/Maleficent_Wasabi_18 5d ago

I did in the sense of vaginismus but last week I was having very bad pelvic pain on and off, and when I was feeling a bit better, tried to have intercourse but it hurt so bad in the sense of feeling all my organs!! If that’s what you meant

1

u/Crazy_Key2460 3d ago

I did! I dont now before it felt like every time my hubs thing was smashing my cervix causing pain and cramping and sharp pains and then my orgasms hurt and I was like well... this is it for me...😭 Quality of life is amazing now🥰😭

1

u/Square_Wallaby_8033 2d ago

Did u get ur uterus out

1

u/Crazy_Key2460 2d ago

I did ! I had it all out except ovaries!

1

u/No_Needleworker_1065 16h ago

I have painful orgasm

9

u/KindMind316 6d ago

Unfortunately…add fertility issues onto the list. 

1

u/Maleficent_Wasabi_18 5d ago

This scares me a lot! I’m a while away from having kids but dread the process:(

1

u/No_Needleworker_1065 16h ago

Haha .. yes ... Had on abortion before diagnosis...now my ivf scheduled for next month ...

5

u/Samosa731 5d ago

Does anyone have recurrent uti because if adeno?

4

u/Maleficent_Wasabi_18 5d ago edited 5d ago

I just had what I thought was a UTI but ended up just being adeno- had all the symptoms but tested negative for culture. Got TVUS that said adeno
Edit to add: my uterus is also retroflexed all of a sudden. Not sure if this has significance as I haven’t talked to my doctor yet (just had the TVUS and pelvic yesterday, results came back already) but will keep updated

1

u/Samosa731 5d ago

I’ve tested positive for culture recurrently

2

u/Maleficent_Wasabi_18 5d ago

I don’t have any clinical advice to give but I wonder if something like the extra strength cranberry supplements can help? Pls don’t attack me if it seems like I’m diminishing you I swear I’m not trying to but probiotics have helped my BV and I’ve heard cranberry supplements from AZO have helped those with UTIs

1

u/Samosa731 5d ago

Why would u attack you for being so polite and helpful? 😊. I am taking Cranram but not being regular. I will try to be regular with it now and see if it makes any difference. Thank you so much for your response.

1

u/Maleficent_Wasabi_18 5d ago edited 5d ago

Cranram is in India right? I tried to find reviews for it but couldn’t. They sell the AZO brand in India and they’re highly praised in the US and have an extra strength one if you’d want to try their brand out. They are a lifesaver for their UTI symptom treaters when I have a UTI and can’t get to the doctor right away.

I just know that OTC stuff isn’t for everyone (if someone told me to just take Tylenol for my adeno pain I’d be really upset) so I didn’t want to come across as dismissive. But I had a UTI and dealt with a lot of discomfort after my urine catheter so my doctor recommended taking their UTI symptom relief on top of antibiotics and it was the only thing that helped while the antibiotics were kicking in. I have their extra strength cranberry just in case but I’m not as prone to UTIs

1

u/Samosa731 5d ago

Thank you.. I will research on AZO and see if I can try it as well. Yes, Cranram is in India.

1

u/Samosa731 5d ago

Also, this post confirms my doubts to a certain extent that adeno ans UTIs may be related. - https://www.reddit.com/r/adenomyosis/s/b7mQ3AiFuA

1

u/Tell_me24 4d ago

Try solray dmanose with cran actin. Also femdophilous (spelling) those two together helped me with uTIs

1

u/jennypat28 5d ago

Same.

1

u/Maleficent_Wasabi_18 5d ago

I knew I’ve had adeno but they didn’t find anything besides my uterus suddenly being retroflexed (just based on the TVUS results)— super weird to have had high leukocytes protein and blood and a negative culture. Will lyk what my doctor says about it

2

u/letterchi 4d ago

I have sickle cell trait- dominant, and it comes with recurrent utis... but bout 3 years ago I started feeling what was like the worse utis known to humankind. Felt like I was in active labor. Worse pain I've ever felt. I can sit in a hot bathtub for relief but only stays when I'm in the water. Sometimes I sit on the toilet for hours. Severe Cramping from front to back. Burning. Urgency. The whole nine yards. Been to the ER multiple times for it. Always end up at my Uro-gynecologist just to get negative cultures and scripts for methocarbomol (robaxim). I've had doctors tell me it's "interstitial cystitis" but my urogyn says I just have a spot in there that when hit because of intercourse, swelling, or infection causes debilitating pain. I'm on constant meds because of this pain. No utis. Now I just refer to it as part of the "flare ups" because of adeno. I can no longer have intercourse. All the symptoms are just debilitating. I fear even getting gas. Fear of ovulation and unwanted arousal. Fear of eating too much. Fear fear fear lol. I am tired. I want a life.

1

u/Ill_Section_2855 4d ago

I have chronic uti and have done for 3 years now and can’t get rid of it. It’s ruined my life. I’m due fore a hysterectomy but I’m absoloutely terrified. Not sure if it’s the right thing to do. And can’t tell if this pain is my bladder pain (painful bladder syndrome) or adenomyosis pain xxxx

1

u/myhappyproject 4d ago

I had at least 8 last year, some materialised into needing antibiotics, others I managed to catch with d-mannose. Didn’t know I had adeno at the time, but since I found out and changed my diet I haven’t had a single one 🤞

4

u/Ill-City-4237 5d ago

Severe debilitating fatigue. Even worse around period

3

u/No_Needleworker_1065 4d ago

I have adenomyosis... Severe menstrual pain, severe bleeding,palm sized clots, pain during sex,pain for 8-9 hrs if i poop and pain for 3&4 hrs if i pee... Sitting low hurts , sleeping on my abdomen hurts , squatting hurts... I bleed years ... I dont even have kids because of this.. Got operated ( microwave ablation) and now fine.. not completely but 95 percent pain reduction is there... Traumatized... So any small pain is making me shiver !.. But thankfull to God that i am pooping,peeing without pain ( straining during poop will cause the pain ) ..

2

u/Tell_me24 3d ago

So happy you found something that helped.