With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get free booklets, access Hysterectomy Checkpoints and more. You are not alone. The HysterSisters are here for you. Join us today!
I was finally diagnosed after a year of problems and I now know I have adenomyosis. I am a
nurse and worked in a OB/GYN office for awhile and still really never heard of this condition.
I found out after having a cyst removed from my ovary that my uterus was very heavy and boggy
thus the diagnosis. I am scheduled for a hyster on the 18th. Last year I had every test in the book
because my symptoms mimicked many other conditions.Can anyone out there with this diagnosis,
let me know what symptoms they had and if they had a hard time being diagnosed? I still have to have
to have a colonoscopy on Thurs.to rule out any problems there since this condition actually caused me
to have a rectal polyp. Thanks for any info you can enlighten me with......
I had it diagnosed by pathology post-hysterectomy. I had severe menstrual pain that was not resolved by laparoscopic removal of endometriosis and hysteroscopic myomectomy. I also had painful, crampy orgasm and sometimes pain with arousal. My uterus felt normal on exam; I didn't have that "boggy" uterus often reported. I've never been pregnant. Uterine biopsy is a long-shot crap shoot to diagnose adenomyosis because they've got to luck into a spot with the tissue in it.
It's tough to diagnose definitively before you have the hyst and the pathologist gets a good look at the whole uterus.
But I've had a pain-free menstrual cycle (also without the period, of course) and pain-free orgasm and I'm really happy now. The nice thing about adenomyosis is that, if there's no endometriosis anywhere else, it stays gone.
I had almost no recurrence of endo between my last surgery and my hyst., so I'm very hopeful for a pain-free future.
You sound just like me. I have been through a zillion tests.
Here is what I wrote on a post earlier this week.
See if any of this sounds familiar
This whole process is driving me crazy. I am scheduled to have a TAH/BSO on April 9. I am not sure I can do this.
I do not know if this is going to help the problems that I am already having or create a whole new set of problems.
I was diagnosed with endo 18 years ago before I was married. Had a D&C and felt better. I had 2 beautiful daughters and a bonus daughter (from my DH previous marriage). This past year I have been really sick. I have been to every Dr. in town nearly and no one can figure out what is wrong with me. I have alot of digestive problems. Upper & Lower Scope done (found nothing) Checked Thyroid (nothing) Checked Hormones (nothing) Abdominal Ultrasound (nothing) I have been checked for Lupus, Diabetes, Hepatitis, Thyroid. I have been told I have FM (not true), I have been told that I just have anxiety attacks. I have even been told that I am just having major PMS. I'll show them major PMS I have also had my B-12 level checked, and even had a brain scan (so many headaches)
This is how I feel. I am so run-down. What I was told is anxiety was also told it was just hot flashes. I am having bad cramps with my period. My back hurts alot.
I have heartburn and indegestion all the time, I have trouble with my bowels from time to time. I am having recurrent Vaginosis and Cervicitis. It is very uncomfortable to have sex. ( I always thought it was supposed to feel like that. How stupid is that?)
I get dizzy and my right shoulder hurts quite a bit. I have been told that I am depressed and that I am creating problems. I guess that is a nice way to say I am a Hypochondriac.
I finally found a Dr. that told me that it is most likely my endo coming back and he also said adenomyosis. My uterus is also falling. He first wanted to do the ablation, but I did not want to have to take that danazol. He said that a hyst would come sooner or later. I decided not to put myself through unnecessary little surgeries, when the big one is coming anyway.
What was I thinking.
You now have my almost complete medical history over the last year. Sorry this is so long, but I really needed to find this place.
I really do not know if I can go through with this. I am afraid that I am going to continue to have most of the same problems I am already having.
Welcome. You have found the right place for support and the knowlegde of ladies who have been there!!
I was surprised when I read my pathology report (which I got a copy of to file for some salary continuation insurance) to see I did not have the fibroids which had been diagnosed via ultrasound some years ago! I had adenomyosis instead...which is simply endometrial tissue growing WITHIN the walls of the uterus. It cannot be diagnosed until the uterus is out (or perhaps by a biopsy of the uterine wall...if they happen to hit the right spot???). My doctor assured me that adeno can (and did) cause all the same bleeding and pain problems that occur with fibroids.
Keep reading, posting and talking everything over with your doctor.
I had adenomyosis for years without diagnosis. Extreme pain, bleeding and clots with periods, which became closer together and heavier as I approached menopause. Biopsies, D&Cs, Hysteroscopy and Endometrial Ablation did nothing and did not come back with a diagnosis. I don't think a lot was known about adenomyosis until fairly recently. Most of us got the diagnosis of Dysfunctional Uterine Bleeding.
Before my surgery I had two ultrasounds that suggested adenomyosis and an MRI that confirmed it. Pathology report said EXTREME adenomyosis.
I don't know how accurate the ultrasounds and MRIs are in diagnosing this condition. Sometimes it depends on the quality of the machine and the skill of the radiologist. Sometimes maybe it just depends on you, your symptoms, and what kind of pictures they get. Not sure.
I know this is a late reply to your post, but during my 2 wk post-op check, the Doc told me that the pathology report showed adenomyosis for me, too. I decided to check the threads on this subject since it is now of new interest to me! The TVH I had was for fibroid, and he thought that was the source of my problem. But he did say the fibroid was smaller than he thought, so I bet the adeno was causing me more of my grief and had been around longer than the fibroid. I am 45 yrs old and had a son 20 yrs ago with a LOT of difficulty...was on Clomid fertility pills but finally conceived. So I'm guessing it is possible the adeno has been causing me pain and problems for a LONG time. Too bad they cannot diagnose this better yet!
I was also told by doctor that I had adenonyosis after a laproscoptomy surgery. My doctor also said my uterus was mushy and boggy. I had the following symtoms: senisitive stomach alot of vomiting, feel fine one second and vomiting the next, explosive bowel movements and irratible bowels, sharp lower adominal pain, very heavy and clotty periods that only lasted for 3 days, periods were very unregular I would go three months without having a period at times,and fast growing facial hair growth. After my surgey I had alot of pain on the left side with a big hard lump there, which has gone down now and pain has lessened. And hair growth has slowed considerably. Anyone else any of these symptoms?
I have also just been told I have adenomyosis The long and short of it ** My regular Dr is quitting (she is only in her 30's) I went to her one last time because we are short on Drs and I don't have a new one yet. I went complaining about a pain on my side that would not go away.She usually says that my pains are normal and some women just get more pain as they get older ( in other words its just in my head) YAh RIGHT ! But this time I nearly jump off the table , she still cant feel anything( does find a pulp) but sends me for transvag ultrasound .After weeks of waiting I get a 5 min appt were she leaves the room twice and in between tells me I it looks bad and I have endo she is sending me to a gyn and I'll have to talk to him about it . I have no idea what endo is I find this site thank God. I learn about it then go to gyn He tells me that I don't have endo but I do have adenomyosis ,a tube disintegrated and a small cyst on ovary He says I can live with the pain (he will give me pain killers) or I can have a hyst. I don't know what I should do . From all that I have read (hours and hours) the adeno most likely will get worse and I am only 41 so it is a while before menopause when it should be better. Sorry I'm not much help but I wanted you to know that you are not the only one with these problems and the hyster sisters are a great support .
I just got back my pathology report at my 2 week post check up and it also confirmed what my Dr suspected - adeno. I also had some fibroids in my uterus and in the uterine wall itself - one was trying to push the inner wall out. The adeno caused me a great deal of pain with periods - frequent and heavy, and it also made my uterus grow which caused some really bad back pain that shot down my legs. The first thing I noticed post-op was that my back no longer hurt.
I've heard that the only sure cure for adeno at this time is a hyster. I've also heard that it is really hard to diagnose because it can't be seen until they cut the uterus in half, or if they are lucky enough to biopsy an area that has it. However, the soft, boggy uterus and the uterus growing are some indicators. I have found some info on the web regarding adeno - quite often there is a link with endo. It's really amazing how many people have never heard of it. I hadn't until a couple of months ago!
By the way - I kept my ovaries because the adeno doesn't affect them and they were fine!
Thank you, ladies for this thread.......I truly can identify with some of the symptoms and am preparing myself for the ultimate blessing......that I might, like Deb.....wake up after the hyst and have no more back pain! I can tell you that after 12+ years of chronic back, leg, hip and pelvic pain (including sciatica and other crud) I would jump at a chance to trade pain meds, TENS unit and forearm crutches (the pain is soooo intense I actually go into complete muscle spasm below the waist and cannot walk unassisted) for a hyster. In fact, I've asked Santa for a hyster each and every year since my tubes were tied.......and the Big Red Guy is finally coming thru for me!
I go to the Castle on Monday.....and have to wait til noon for the OR.......but I figure, after more than a decade of this, what's a few measly hours?
Bless you all......you've been an unending source of encouragement and support.......