Adenomyosis and journey to diagnosis!

[@reginawells3040]

No matter what you say; "Soaking 16 overnight pads a day... Uncontrollable bleeding.... Bleeding for 16+ days" and the doc makes you feel like a crazy women. I am 53 and JUST got diagnosed yesterday, after 15 years of trying to convey the message that something is wrong... I never even heard of Adeno until yesterday. What a relief, after doctor #4 to hear I was not crazy, just couldn't get the help I needed.

[@natashawarburton8917]

I resonate with this story so much, this exact thing happened to me and I had to force the doctor to go through and book a scan and I was eventually told that I have adenomyosis. I have had extremely painful periods and heavy bleeding since I was a teenager and always been told “it’s just womens issues” or “the pill will cure that” and it wasn’t until my early 30’s that I actually got diagnosed with it and even then they never explained what it was I had to do my own research to fully understand it including buying books on it, and I have in the past had to explain to a doctor what adenomyosis actually was as they didn’t know. Thank for you story.

[@jessi8656]

An er dr told me 10 years ago I had Endo MY OB gyn-nothing even during laparoscopy. This year got sa’d suspected poss Sti and PID. Ultrasound 15 mins later she came in and said omg you were ignored for 10 yrs. I had the Lileta 9/2021 and IM IN TEARS RN ITS THAT TIME .

[@Sunflwrbtch]

How do you control the bleeding? I have this too

[@bigkeesh0441]

I have both endometriosis and adenomyosis,I was offered the mirena which is a form of birth control.you don’t really get a period you’ll spot once in a while..but honestly you’ll still have symptoms of a period as far as cramps here and there or the usual stuff.keep in mind everyone’s body reacts differently.i hope this helps and good luck

[@danimarisol]

❤

[@helenalovelock1030]

Yes one Doctor had to google it right infront of me

[@sjp736]

So fed up with gps blaming everything on IBS

[@AngelS-br3vv]

Me too!!!

[@veronicahincapieescobar1415]

What a wonderful conversation. I was diagnosed w Endo and Adeno at the age of 16. After 4 major abdominal surgeries, my last one on April 3 2023, I have to say we need to continue advocating for ourselves. We need to talk about our conditions to other people and make then aware of it. At the age of 38, and after dealing w a lot of pain, infertility and premature ovarian failure secondary to endometriosis infiltration to my ovaries, I decided to have a hysterectomy plus tubes and ovaries. Lately my endo symptoms improved, but my Adeno symptoms got worse. Today is post op day 8, I feel amazing. I started HRT yesterday. Meditation, staying active as much as posible, and in my case Isolate CBD tincture has been a blessing. This is the first time I did not have to use narcotics after a surgery. I believe staying positive, going to therapy, and learning to embrace my condition has been important tools to cope during my 25 year journey.

[@sharu_1]

Heyy i need help i m 18 nd just came to know abt that i have andenomyosis can you please suggest me some treatment which will help me

[@mrshappy7312]

What CBD brand are you using?

[@rachelcoleman4693]

How have you been doing? Have you experienced any body changes or weight gain after your hysterectomy?

[@nataneebarrett3180]

I had the im not being lazy convo one too many times. I also had to fight to be diagnosed. So sad

[@nadiamaringo9989]

Please tell me more about this injection procedure

[@avreage_joe5103]

Carnivore diet is working for me, both endo and adeno symptoms pretty much gone after 3 months

[@mrshappy7312]

Can you tell me what do u eat in a day? Do u have severe pain? Don't you eat any carbs?

[@ms.harripersad8227]

I thought you need to stay away from meat

[@whitneyanders5945]

Yes you do. Please don’t try a meat only diet. It is very bad for health and is not sustainable for the body or the planet long term. Anyone who says following a super restrictive diet has ‘cured’ them of their ailments is the equivalent of a snake oil salesperson. You need fibre and you need carbs. If the human body was designed for a meat only diet then we would have jaws and teeth like a cat.

[@mariaokoroafor1438]

I just started carnivor diet on the 5th of February 24, I added few nuts and the flow stopped. High fat diets I believe, increases our progesterone and help balance out the estrogen dominance. The flow just stopped yesternight and I am dry this morning 😊

[@mrshappy7312]

​@@mariaokoroafor1438 that is good news, keep updating if you will get pain again, i sto eating red meat and pork, only chicken and fish and vegestables, the pain is tolerable now, plus i used cbd oil.

[@melco5489]

I just had a hysterectomy, bladder repair, vaginal vault lift and rectocele on 3/3. Results came back on my uterus adenomyosis focal. My doctors thought it was fibroids. Now I understand why I suffered all these years. My symptoms were a period flu and ovulation flu. I really felt so ill and stomach upset. I didn't have pain except cramping like severe diarreah. I also was severely constipated at times. I am one week out of surgery age 44 symptoms since 20s. I am not perimenopausal yet. I feel much better. My recovery on had one 1 complication a uti. After that I am just sore in the rear area like after my episiotomy. I am done having kids for those who can't deal with the issues maybe consider surrogate or UAE. Good luck ladies

[@acaciashukle7414]

Your symptoms sound just like mine. Considering a hysterectomy but I’m scared. I’m done having children though. Was yours a total?

[@melco5489]

@acaciashukle7414 HI, my doctor left my ovaries but took my fallopian tubes. The hysterectomy was a piece of cake. The rectocele was the most painful, but it was not unbearable. I was so scared to do this major surgery, but I could not deal with the symptoms anymore. I forgot to mention in my post you replied to that my periods had very large clots like the size of my palm but only 1 day out of the week. I sometimes every 4 or 5 months would bleed so heavy for one day that I would end up in er but not anemic because it did not last more than a day. I felt like it was the beginning of my condition adnomyosis starting to get worse. Good luck and I was so scared the night before my surgery I called the nurse and I almost backed out and my husband had to drive me around town to calm me down and convince me it was OK. It's normal to be scared just keep educated on everything so you know what to expect and make sure you follow the directions on the bowel prep (veg laxatives and stool softners) you will be fine I only took 1 pain pill after and the rest was advil and tylenol. Best of luck reach out if you need any more info.

[@marcymega4752]

@@melco5489 thank you for sharing your story! It's truly inspiring. I'm 43 with a long, painful history of endometriosis and I just discovered I've additionally developed adenomyosis and fibroids. I'm opting for the removal of my uterus as well.

[@Booyared1]

I would get a full hysterectomy but I have pelvic floor issues as is and I don’t want to risk my organs filling that void amongst other things like a loosened vagina. Truth is I’m scared

[@melco5489]

@Booyared1 When they repaired my pelvic floor, they also tightened up my vagina for that reason. If you go to a urogynocologist you have to request that. Mine suggested it so it is way better than before.

[@NatureisCoolBA]

how can i get in contact with Charlotte? I can't find her blog

[@florachristian2044]

UFE/UAE is a treatment for Adeno as well as fibroids she says how their are treatments if it's bad enough but the whole point of Endometriosis is that it's bad enough from the outset, that was age 11 for me & I had to endure several bouts of ovarian torsion before eventually being diagnosed age 39 after being told age 35 my infertility was unexplained. I was never given an Adenomyosis diagnosis but then it took 28yrs to get my Endometriosis diagnosis I did have fibroids & when I eventually got a referral for UFE/UAE it worked very well for me. I have read that it's only after a Hyst they can diagnose with any certainty if one has Adeno. Just Saying.

[@NinjaCakkey]

Thank you so much for sharing 💖

[@charmainelugtu1998]

Can you get pregnant if you have adenomyoma?

[@donnaallgaier-lamberti3933]

I too had adenomyosis (plus endometriosis and fibroids) throughout my 20's and 30's until my total hysterectomy at age 36. My symptoms included extreme, pain, bloating, total exhaustion, heavy bleeding etc. My GYN put me onto birth control for one year and I hemorrhaged non-stop for almost a year. The pill made me SO MUCH WORSE. I then fired that male physician and found a female surgeon. I asl consulted with a well know endo surgeon from Bend, Oregon who reviewed my records and told me he could cut out all the endo but having adenomyosis the only real option was to take the uterus out. Eventually I did. I did not want to but the pain and my disability was so great I I hemorrhaged three weeks out of of r every month) that I felt I had no other choice.

[@helenalovelock1030]

What pill did they put your on? Progesterone or combined ?

[@fortheloveofmoon]

Donna how are you doing since the surgery?

[@riza594]

You can try barley grass powder juice it can help a lot.

[@naidaellaga8251]

Just wanna ask, is it ok to do slow jogging although i have adenomyosis?

[@marketabednarikova]

I have it for 9 years and my lufe is so hard

[@helenalovelock1030]

The mirena made my Adenomyosis sooo much worse. I know it works for some ladies but for me it was awful 😢

[@MsLA-tz4si]

Same here. If you have adenomyosis, don't get a vaginal IUD.

[@Booyared1]

My doctor is pushing it on me and I’m pretty much anti BC for myself because of my mental instability.

[@Margiebella19]

@@Booyared1my doctor was pushing for it too mind you I already had a baby while having an IUD I refuse and I am talking to surgeon soon for a hysterectomy.