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Adenomyosis Support

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(no subject) [Apr. 5th, 2012|05:03 pm]
Adenomyosis Support
Hello everyone! I am so happy to find this support group, I will tell you a little about myself. I am 29 married to a wonderful man for 5 years ( together for 14 years) I have a 3 year old little boy ( who desperately wants a little brother or sister) I was FINALLY diagnosed with adenomyosis 2 months ago. I have been to the moon and back with problems with my female parts. When I was 19 I had a baseball size non cancers tumor removed from my left ovary along with 12 cysts on my left side and 13 on my right . I was great after they were removed I conceived my son very fast once we started trying. When my son was 2 we decided to start trying again, unfortunately we had a hard time. In October 2011 we got pregnant finally, but unfortunately it ended up being an ectopic pregnancy in the left side, we were devastated. We started trying again in December and still no luck I started feeling extreme pain in the lower left side right after my surgery to “remove” the pregnancy. I figured at that time it was just tender due to the operation. It went on for a month I got worried I may have an infection or something so I went to my OB. He sent me for ultrasounds but found nothing. My Family Dr ordered more test but found nothing, my pain was getting worse every cycle ( some days I could not get out of bed, my heating pad was my best friend) The Dr’s started treating me like it was all in my head or I was just looking for pain pills. I started to become frustrated, upset and sometimes I would just cry because no one would help me, I just dealt with it on my own. When I would get close to my cycle I would take about 15 to 20 pamprine a day ( so many I would throw up sometimes) and it still didn’t touch the pain. One day in March I had enough, I was in so much pain I just walked into my family Dr’s office in tears and throwing up from the pain, just to show him how bad it gets. He sent me to the hospital right away for a CT MRI and ultrasound and they found the adenomyosis. But I really have no answers about the disorder, all my Doc told me was there is no cure except a hysterectomy and he would do that until I was older, he then gave me a web site to look at and that was about all he told me. He kind of left me in the dark, I still have no pain relief, my Dr told me “ it can’t hurt that bad” I am just wondering from other people what your pain is like on a 1 to 10 every month because sometimes I am at a 7 or 8. My Dr is saying I have a low pain tolerance, I just don’t understand I always thought I was tough, lol . I had a 9lb Baby and didn’t break a sweat lol. I know my Dr doesn’t know much about adenomyosis but from what I am reading it’s extremely painful for a lot of people. I know a lot of you are thinking I need a new Dr lol, trust me I think the same thing BUT there are NO dr in my town I am lucky to have one at all. I am also wondering if anyone has gotten pregnant after being diagnosed, I am really really trying ( even though intercourse is painful sometimes) and I am wondering if you have, was the pregnancy healthy or risky? I would appreciate any tips from anyone with the same issues that would be great because when I tell my friends and family they just don’t understand they have never heard of this before
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Been lurking for a while, finally signed up. Time to say hi 😊 [Mar. 16th, 2012|01:25 pm]
Adenomyosis Support
[mood |anxiousanxious]

Hi everyone,
My name is Faye and I am 26 years old.
I was officially (and finally ... What a relief) diagnosed as having adenomyosis yesterday after 13 months of non stop MB and intense, dibilitating pain.   
Im starting zolodex in around 2 weeks which is frankly terrifying  it also relieving at the same time.
I've noticed from reading past posts that I have been diagnosed relatively quickly in comparison and can only say that I don't know how some of you ladies have coped for so long! I thought the last 13 months had been hell on earth but for some of you suffering year after year I have the utmost admiration for your strength! 
Does anyone have any tips on coping with the zolodex? Such as alleviating the nastier side effects? I feel like a little fish out of water with no one to talk to. I myself had never even heard of adenomyosis before yesterday despite months and months of research trying to find rhyme and reason for my pain and suffering.
I look forward to hearing from fellow adenogirls and finding some sort of peace of mind ... And hopefully being able to provide some to others by sharing my own experience x
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(no subject) [May. 9th, 2011|04:03 pm]
Adenomyosis Support
Hi all... I am 29 years old and have just been diagnosed with Adenomyosis..... I am looking for some serious opinions on my options........ Like I said I am 29 years old, I have 3 children already and have my tubes tied because I have no desire to have anymore children... I have done my homework and dont like the idea of Lupron and other medications to treat it... I also dont like the statistics of an IUD actually working nore do I like the possible side effects of having one inserted.... I am just wondering what is the best plan of action, I dont want to just manage my symptoms I want the issue to me treated. I cannot go on living like I have been...Thanks Ladies :)
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Recently diagnosed with adenomyosis [Nov. 14th, 2010|06:32 pm]
Adenomyosis Support
23 years old, with a medical history that has gone haywire since the beginning of this year. My longest period record happened this February;  a 55 day period (which caused me to faint, require treatment for severe anemia and iron deficiency, and nearly 3 liters of menstrual blood loss).   The pain was horrifying, changing my clothes every few hours was horrible, using plastic bed sheets to avoid washing linens every day. Ultrasounds, hormone tests, thyroid tests, vaginal screenings. No doctor could tell me what was going on. When the bleeding finally stopped, i was put on Lo ovral to "control" the abnormal bleeding. In 6 months I gained over 30 lbs thanks to those BCP's . I was pissed. I wanted answers, real treatment and a diagnosis for whatever was happening.

One doctor suspected adenomyosis (by just a basic finger exam and pushing on my abdomen).  He told me nothing was available yet in terms of a cure or permanent treatment, Mirena, constant BCP's, and eventually a hysterectomy which at 23 is very dangerous. "you have to wait it out, maybe sometime soon, something else will be available" he said.  I wasn't convinced. So i looked for another doctor.

I was diagnosed with adenomyosis about 10 days ago. It was so large,  i could see on the ultrasound monitor the bulging abnormalities inside my uterine tissue.  T he options: Lupron if i wanted to try having a pregnancy, Mirena if i wanted to have temporary relief for up to 5 years, or an Adenomyectamy, removing the lining and the growths inside the uterus with uterine reconstruction afterwards.  This surgery means I have my system, my ovaries, my hormone levels all normal.  I can't bear my own children due to lining removal, but surrogacy is an option.   

Right now I'm in the process of setting a date for the surgery.  I want people to know there are other options and every woman should be able to keep their reproductive/hormonal system intact.  A hysterectomy only should be considered for very severe cases of abnormalities and cancer. We're making decisions based on doctors who do not have all of the up-to-date information on what's available and ruining our health in the process by trusting them.
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Thank God I found you!!! [Jun. 16th, 2010|10:46 pm]
Adenomyosis Support
[mood |soresore]

Hi everyone!

My name is Heather and I am 28 years old.  I was recently diagnosed with adenomyosis.  I was diagnosed in 2009 after seeing at least eight different "specialists" who had no idea what, if anything was causing all of my symptoms.  (Which of course made me feel like this was all in my head.)  In 2007 after a doctor said I needed a hystorectomy and she couldn't give me a reason why, I gave up hope and just accepted my life in pain.  I decided to try to have a baby.  After a short month of trying, I was indeed pregnant.  My entire pregnancy was filled with emergency room visits due to "labor pains" from 4 months on.  I ended up finding the most wonderful OBGYN who helped me through my pregnancy.  After a painful pregnancy I gave birth to a beautiful boy.  (I love him to death, but vowed to my husband to never do it again! All of those months of labor pains?!?!?! NO THANKS!!)

After the baby was born I told her about my history.  The never ending periods with the pain that was unimaginable.  I tried every birth control on the market to help, but nothing ever worked.  In January of 2010 I was put on Lupron.  It seemed to only aggravate my symptoms and add some!  Again... I was about to accept my life the way it was.  Taking pain pills to take the edge off, (because nothing, and I mean nothing, stopped the pain,) and trying to cope.  It would break my heart everytime my son would ask me to play but I couldn't bend down.  It ripped my heart out when I would snap at him because I couldn't stand the pain anymore that day.  My doctor said I needed a hystorecomy.  I wish I could end this with a perfect ending but I can't because I don't have insurance and the surgery costs at least 15K.  I have been saving for months now and I am on my way. 

But even though I am still in pain and always on my period, there is a happy ending to this story of mine.  I have found a place where I can share my story and know that there are people out there who believe me.  Women who know what I am going through is real.  It is NOT JUST IN MY HEAD.  It gives me so much peace to know that there are women who have lived through this and made it to the other side of life without pain.  (Still holding out hope that there is such a thing.)  So thank you, to whoever created this site, from the bottom of my heart. 
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(no subject) [Feb. 17th, 2009|08:32 am]
Adenomyosis Support

Hi All,

New but have been lurking.  I am in recovery from a davinci assisted partial hysterectomy
for adenomyosis.  My recovery has been surprisingly smooth. I was pretty scared, but it was
a good thing because even when hurting I hurt less now than I did with the adeno.

They found mulitple focal adenomas, a fibroid and endo, after my last laparascopy came
back "perfectly clean and healthy"  (translation: that horrendous pelvic pain is just in your head).

I really struggled, but was lucky to have a surgeon who does davinci.
It' s been 2 weeks exactly and I am cleared to drive, am walking everyday and although I am
tired and emotional it was the perfect decision for me.

I just want to encourage those struggling to not feel that there are no options.
I wanted to get pregnant first but given what they found during the surgery it would have be horribly
painful and potential tragic.

Good luck to you all!
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LSH scheduled [Dec. 9th, 2008|07:25 pm]
Adenomyosis Support

Well, I am scheduled for a LSH with probable RSO on December 23rd. Things have just been getting progressively worse for me. I ended up hospitalized in September because my body rejected my IUD and they were worried I was developing PID. Lots of ER visits, you know the drill, and enough is enough.

Wish me luck.
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Introducing Myself [Apr. 16th, 2008|09:34 am]
Adenomyosis Support

I want to introduce myself to this board. My name is Michelle. I'm 31 and married with 3 kids. After having our third child and my husband getting a vasectomy, I went off the pill for good and that is when the trouble started. I had a lot of symptoms similar to endometriosis and after telling my Dr to do the lasoroscopy surgery to look for endo (he didn't believe I had it since I had 3 children so easily), they found endo in 3 areas and classisfied it as Stage 1. My mother had the same thing and a hysterectomy around my age, as did her Aunt and Grandma (they all kept their ovaries though and were fine). So that was last February I had the surgery and they lazored off what they could find. 
Fast forward now to this year when the symptoms started coming back again. My main problem is around the week after my period stops (or around ovulation time) and the pain is extremely intense. It will hurt to sit, walk, cough, move, have bowel movements, etc... It feels like I have this heavy feeling right in the middle of my pelvic area and everything is pressing against everything and it hurts. The pain in the middle area of my pelvic area can be really intense and I swear every step I take, I feel it. Sex can hurt at times because it's so sensitive up in that area. I bleed off and on starting on day 23 of my cycle. It will be a heavy spot and then stop and do this off and on for days until I start my period 5-9 days later. Then I bleed really heavy the first day and then spot off and on for the rest. Lately I've notice the blood is dark brown and red. So I had an ultrasound done when I wasn't on my period last November and it said my uterus was slightly enlarged and so was the lining. No one mentioned anything to me about that being abnormal or the size. So 4 months later, I go back to the DR with horrible pain and sensitivity in that area again, pain in my upper legs, my stomach is bigger then normal, etc... they run some blood tests and did another ultrasound but I just started my period at the time. The Dr mentioned Adenomyosis but I had never heard of it. The ultrasound this time came back as 'slightly enlarged' just like last time and they said it was the same size. They said it was the size of  8 weeks pregnancy.,Which was also the same as the last ultrasound but I was not on my period that first time. I was told the enlarged was normal because I was on my period. But why was it the same when I wasn't on it last time? So I'm confused. Does this sound like Adenomyosis? My pain isn't that horrible while on my period but worse the week after I stop. I know I have endo since I was diagnosed with it. But I don't know about this. My mom said her uterus was huge and filled with fibroids when they took it out back when she was 30. Is it hereditary? Or is it just enlarged because I've had 3 kids? I just think the sensitive pain and bleeding and it being larger then it should be means something, ya know? 
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so..... x posted [Sep. 14th, 2006|05:10 pm]
Adenomyosis Support

i called my dr...

Read more...Collapse )
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Now what? [Jul. 26th, 2006|01:20 pm]
Adenomyosis Support

Hi all,

I had my first lap ten weeks ago. I have what seems a text-book history indicating endo, but when doing the lap my doctor did not find any endo, only that my uterus was completely adhered to the abdominal wall. (I did have a c/s with my daughter 3 1/2 yrs ago)

We're now working on a presumptive diagnosis of adenomyosis. My doc says my uterus is not particularly enlarged or boggy, but the pain is definitely pelvic and tied to my cycles. I just got my second shot of Lupron on Monday; am also doing add-back. No relief from the Lupron thus far, just side effects (hot flashes, mood swings, rage flashes, extreme fatigue). When I had an MRI this spring, they said the appearance of the uterus was consistent with uterine fibroids, but my doc says she did not see any.

I'm really feeling overwhelmed and lost here. I've been doing a lot of research on my own, and what I've learned has led to a lack of confidence in my doctor. She was pushing Lupron instead of a lap, and only did the surgery on my insistence, and indicated that if the Lupron didn't work we'd have to look at other possible causes because that would mean it couldn't be adeno causing my pain.

thoughts, input, recommendations most sincerely welcomed...


(cross-posted to endometriosis)
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