My uterus was in fact three times the normal size, and none of the scans I had over the ten years could pick up on it.

⁠@@soniajohn231Holy crap, what? The scans didn’t pick it up? 😳

@@nanu1398 I got the final diagnosis after the surgery, otherwise I would never know.

your are welcome

'm glad to hear that you found relief through a hysterectomy! Adenomyosis can indeed be a challenging condition to manage, and it's great that you were able to make a decision that improved your quality of life.

I have been recently diagnosed with adenomyosis at 17. With the rarity of the disease and the lack of information out there would you mind I ask how your experience has been with it and if it really affected your biological cycle?

It’s a nightmare, the pain and all the bleeding ruined my life, I had to plan things around my period, which was on time every 28 days for 27 years. I anemic in my teens from the heavy blood loss, and I had to take B12 shots. I wish doctors cared about women back then, but my mom had it too her whole life, and no one just said heavy bleeding runs in your family it's ’s just the luck of the draw. My poor mom had it too and lost huge blood clots the size of a small organ. As did I, and later, she developed fibroids. I developed a small one which happened to be on the cervix and caused me the most pain ever after a lifetime of immense pain, but this one prevented my heavy blood from flowing and my blood dried and formed hard clots that my body would try to pass and the pain it caused my backside felt like I was being violated by a hot bayonet. Forgive the graphic description, but it’s the truth. I couldn’t walk and would jump up and down in the shower with hot water running to get it to come out. Also, I had terrible PMDD. To say I suffered horribly is an understatement. On top of that because of my pain I never wanted children so as not to pass this on to a daughter…pain killers barely made a dent in the pain and every month I wanted to die or at least get my uterus removed, but of course I was too young, and even later I did not have insurance when it was worse in my 30’s. Back in the 90’s we were afraid of hormones so I did not know that progesterone was not only safe but would stop my period. I was so afraid to take the, thinking it would cause cancer in the future…but now the pain got so bad I said to myself I would rather risk the chance of that than live through another period. I wish the doctors had told me to try it to stop my period, but theynever cared enough to give me that option. They just said you have to live with it until menopause, it’s just your luck. I am so, so eternally grateful to the nurse practitioner who cared enough to order my first ever ultrasound and immediately put me on provers 10mg. She knew it would stop my period and my lifelong suffering. I was 40, and she gave me back my life. I tell every woman I know with pain and heavy bleeding that there is hope and you don’t have to get a hysterectomy. Especially cause you are so young, that’s not a decision to make. Also you can have kids if you want, my mom had me and my older brother at 35 nonetheless. We are both miracles…so don’t lose hope if you think you can’t get pregnant one day. To say my period ruined my life is absolute truth. No woman should have to suffer this misery and the grossness of boot clots and heavy bleeding…and the bloating, I looked 6 months pregnant that’s how inflamed my uterus would get. AndI was thin, but people wouldask me if I was pregnant. Please ask your doctor about progesterone, it actually prevents a lot of the female cancers…ask your doctor. I had too much estrogen whichmade me feel out of control and emotional before my period. I hope you make the decision to NOT suffer and not be afraid of stopping your period, it is a gift for us. We don’t deserve to go through the hell that is this disease, it’s a cruelty, and you don’t have to live with it, sweetie, the only advice I will say is don’t get the IUD with progesterone, it’s ehat they are pushing on young girls and it can imbed in the thick tissue of the uterus, especially with our situation. Just check with your doctor but also be aware, and implanting that causes a lot of pain …from girls who had it. I take a small pill a dayand that way, I can control what I put in my body. If I decide I want a hysterectomy instead of a daily pill, I stop, and there are no issues. With theIUDS theyhave to remove it, it can be expensive and it’s not comfortable. I hope this helps, please feel free to ask any other questions. I must say I never wanted kids since I was a kid, so this was not the only factor in making my decision, but it did make me feel realize that I made the right decision all along. I think for me, I would have had a difficult and painful pregnancy, and I was scared of going through any worse or added painful to an already painful life.

@@Curiamacabre I cannot take back the pain you've experienced but I'm so happy you finally got diagnosed! It's better late than never after all. For a while I was living without answers too, and the mental and physical toll it was taking on me is indescribable. It's a miracle for me to get diagnosed even in this day and age. With the stigma attached around women being frail and attention seeking during their periods many doctors don't ever rule out any possible cause to their pain until it's too late. My physician had ruled out anemia months ago (just by looking at my face) before my diagnosis but never gave me any medications or referred a test thinking I am just starving myself to lose weight as it's the trend between young girls these days. People could tell I didn't look well anywhere I'd go but I just blamed it on my food habits and moved on. It was until my period stretched to more than two weeks that I realised something is wrong with me and got an ultrasound to find out that I have focal adenomyosis with two small polyps in my uterus and yes, anemia. It's both a blessing and a curse to be a women regardless of the generation. I'm glad I caught it at the right time but would've caught it even earlier if women health was actually taken into consideration. Thank you so much replying back and I just hope you're doing much better now!

I cannot emphasisze enough on how thankful I am to you for replying back. With this condition, being heard is so unbelievably hard (also it doesn't helps when KZfaq constantly deleted my comment). The pain you've faced is unimaginable, I cannot take away the pain but I'm so glad you've finally got the necessary treatment (better late than never!). Now, I've got focal adenomyosis and polyps etched in my uterus which haven't brought out any severe side effects but enough to disturb my day to day life with the heavy bleeding and anemia. I've been put on hormone therapy, with a tonic which I take everyday for the bleeding & anemia and also birth control. Although some progress has been made, my chronic condition leaves me concerned about my future, given the vast amount left undone and the great deal still to accomplish.

@taylorjones0 you will be ok. They can manage it with hormones, and though it is extremely painful, it is also a benign (non cancerous) condition. That's the good news!! I was anemic too from my periods as a teen, I had to get b12 shots all throughout high school. Just keep up on the anemia, take iron supplements, and eat well. Baby yourself too (hot pads, electric blanket, especially hot water bottles,, all that for cramps helped me)!! Just be easy on yourself and know that there is hope and way more understanding and compassion now. It's good you have a diagnosis so you can manage it. Back in my day, they just said it's normal for pain like that to run in the family ( every female on my mom's side did have heavy bleeding and horrid cramps). You have my empathy, sweetie, the one thing I appreciated about this condition was that it made me extremely empathetic to suffering of any kind. I became a nurturer and caretaker of others at an early age from knowing immense pain so young. That's a gift I will always be thankful for. Just talk to your doctor and they will help you manage this, and take over the counter anti inflammatories like Advil or Aleve (only thing that worked back in the day) a day or two before your period! You got this, girl!!

Tbh that sounds like when I had adenomyosis. Cured after hysterectomy at age 30, still happy 3 years later and wish I could have gotten it sooner

Yes that sounds very much like my adeno symptoms that came on 2yrs after my 2nd c-section. Def get checked out before you start to have symptoms like anemia, etc. I struggle to keep my iron stores (ferritin) even borderline normal now. Good luck

I got a transvaginal ultrasound and that's how they found it. I had to get a biopsy to confirm (very painful but trust me with the painful periods we've had with this condition, the biopsy is nothing). I have been on 10mg Provera and haven't had a period in 8 years and it's been a life changer.

Im.worst my period was 3.months nonstop...this is my problem.everytine i have my period..

@jocelyn; Urinary symptoms specific to the period may be related to endometriosis. however UTI's and interstitial cystitis are also possible.

My adenomyosis made my bladder have crazy pressure so I urinated frequently and then peed myself a few times, hysterectomy fixed it. I also heard people do pelvic floor therapy to fix this kind of thing

Abarna: Many patients with PCOS also have endometriosis. Birth control and NSAIDs are an excellent first line treatment option. However when medications fail, patients need to find a provider who specializes in endometriosis resection.

@@DoctorRich thank you so much doctor ❤️ but I'm from srilanka there are no good doctors for endometriosis. These gynecologist are doesn't care about my pain and struggles . My stomach pain kills me day by day

​@@abarnaparameswaran4531 вы избавились от болей?

Hello! I'm not a medical professional, but I am an endo/adeno patient who has had 3 exploratory/excision laps and a hysterectomy in the past 10 years. It's definitely not uncommon to skip imaging and go right to surgery - I only had an ultrasound to look for adenomyosis, after all three exploratory/excision laps. Endometriosis can be difficult or impossible to see on imaging unless the lesions are quite big, so imaging misses a lot of endo. Gentle hugs! I'm wishing you all the best in your search for answers and relief.

Anne Larsen: imaging is more to RULE OUT other conditions than it is to RULE IN endometriosis. Check out this video here: kzfaq.info/get/bejne/er6Bacejl7TVc6c.html

both adenomyosis and endometriosis can occur in 10-20% of reproductive age women. and some women have both.

There are other risks to having a hysterectomy at a young age, so it should be carefully researched an considered.

I’m almost 40 and they said no

@@14shereeMaid24 time for a second opinion...and doctor...