Adenomyosis Questions

I was told today by my gynecologist that, in spite of rather compelling MRI evidence, I almost certainly cannot have adenomyosis because adenomyosis is a disease of middle aged, multiparous women. However, I wonder if the statistics have been skewed by the fact that doctors tend to refuse hysterectomies to younger women, thus making accurate statistics for this population impossible.

Therefore my questions for women with adeno are:
At what age did you first begin to have symptoms of adeno?
At what age did you receive a non-surgical diagnosis?
At what age did you receive surgery? Or, if you did not, were you denied surgery due to your age?

This is partly for my own edification, and partly to open a discussion as to whether adenomyosis is properly diangosed and treated in younger women, and whether the statistics on it can really be trusted.

Thank you for your time and attention.

I probably had adeno from the time of my tubal ligation. Prior to that, I'd always had very light periods (it all went retrograde, becoming severe endometriosis). However, afterward, I started with flooding, clots, etc.; I'd even have contractions similar to childbirth!

I was 39 when I had my DD; not "young" but not perimenopausal, either. Also, I'd not had more than the one child (ectopic and miscarriage, too). I think there are more risk factors than age, such as instrumentation of the uterus (such as with a D & C, such as I had after the miscarriage), tubal ligation, prior endometritis (infection/inflammation), and endometriosis. All of these can contribute.

Frankly, I'd consider a second opinion when your GYN allows preconceived notions to override clinical evidence, such as MRI results. Adenomyosis does exist at a cellular, microscopic level, and it's not uncommon for the diagnosis to only be made at pathology time (i.e. after a hysterectomy). Mine, in fact, wasn't mentioned to me as a possibility, even though I'd mentioned the change in periods to a couple of doctors. As it turned out, mine was diffuse (all throughout the uterus) and severe, leaving not much in the way of normal uterine tissue.

Sounds to me like it's time for a second opinion, IMHO. There are some new therapies being discussed for adeno, but many doctors won't consider any of it unless you turn up anemic (which I did).

Hope this helps,



Audrey

	Quote:
Originally posted by Audrey S. Frankly, I'd consider a second opinion when your GYN allows preconceived notions to override clinical evidence, such as MRI results.

This was my second opinion, the first gynecologist refused diagnostic testing (beyond an ultrasound, which showed problems) until I forced her hand, so I didn't feel I could work with her any longer. Maybe I should have stuck it out with her, at least she was willing to accept the results of those tests when they finally were ordered, but I just couldn't trust a doctor who withheld tests that her own records indicated should be done.

At this point, I am mostly just wondering if this is a pervasive situation, or if it is for some reason specific to my care.

Hi,

I was just diagnosed with minor endo and adeno back in Feb of this year, I am 35. I have had symptoms of these since the birth of my second child at 29, I have also heard of young women who have not had children having adeno.

My symptoms started out as pain with intercourse, and that was my main symptom for years, then I started feeling like I have a bladder infection much of the time (with no infection) and back pain, and sharp pains in my uterus and right lower quadrant. I have gone to my regular ob/gyn after the birth of my son and complained that I was in pain with intercourse and something wasn't right. She did an internal exam and dismissed me, saying I have nothing gyn-wise wrong with me. I suffered for 5 years, until I finally decided to seek out a specialist in woman issues, and he took one look at my symptoms and told me what I have is gyn related and he was going to find out what was wrong with me, he was sure it was endometriosis and scheduled me for a lap. He was supprised that he found only minor endo and also noted that my uterus was boggy and on the large side of normal, saying that I am showing the signs of having adeno.

He did laser out my few spots of endo, and it made me feel a little better, but the pain did continue, making me believe that the majority of my pain is from adeno. I went back to him a week ago to figure out what we can do treatment wise. I told him I have decided I will not do Lupron, so he said that leave either progesterine treatment or hystorectomy. I am trying the progesterine pills, on day three, so too early to tell if it will work, but I think I am feeling a little better, if this doesn't work then it's hystorectomy for me.

How old are you? If I were you I would get a second opinion, seek out a specialist, this guy sounds a little old fasioned.

Hope this helped.

Debra

I had the most severly painful periods my entire reproductive life. The heavy bleeding and the huge clots started up in my mid to late 30s. I have been told that heavier bleeding is fairly common in our later menstrual years anyway and is not really pathological-results from normal hormonal changes of aging. The adeno might have made mine worse. My adeno was diagnosed after the hysterectomy by the pathlogy lab.

In any event, my periods had stopped before my surgery and the adeno was no longer causing me any grief. I never considered a hysterectomy prior to my periods ending.

I was 29 when I had my TAH for andeo. I think it may have been brought on after I gave birht when I was 26. After I had my dd I bled for almost 2 yrs straight, just a few days here and there when I wouldn't bleed. I had ultrasounds a few times a year and cysts would show up mostly, but on my last ultrasound my uterus looked boggy. I started having severe cramping that started in Nov. and it got so bad there were times I was crawling.
My dr. had me on constant birthcontrol to try and stop my bleeding and it never worked, it slowed it down, but never stopped it. In 2003 he did a exploratory lap and D&C and he found scar tissue and a cyst.
He wanted to wait to do a hyster on me to make sure that I was ready and could deal with never having any more kids. He said he also had to have proof for the insurance company that we did try other alternatives first and that nothing was helping.
I hope you get whatever it is that you want, and I understand having to fight so hard because they are looking at your age, not your syptoms. If I can be of anymore help,please feel free to pm or e-mail me.
Good Luck!!!
Michelle

Hi

I am schedule for TAH next Wed for suspected Adeno.

My main symptom is heavy bleeding, which I have had now for about 18 months, I am 42 years old. The diagnosis will (hopefully) be confirmed after my op, I have already had various tests to rule out fibroids, endo, cysts etc.

I am not a typical case as I have had no pregnancies, and until the recent diagnostic tests, no pelvic intervention of any sort.

One thing I have learned is that Adeno is often associated with an elevated CA125; mine is 148 and has been persistently rising for about the last 9 months.

I hope you get to the bottom of your problems soon.

wishlist

oh my god, i feel like i am reading my own story!!!!! my laproroscopy revealed multiple adhesions and an erosion on my uterus. one month after surgery i still had the pain and started my first lupron injection one week ago, now i am bleeding very heavy. mine all started with very painful intercourse and terrible cramping, sometimes pain feeling like labor. i really does help debra knowing other people are experiencing what i am thank you, mary

	Quote:
Originally posted by dmmiller360 Hi, I was just diagnosed with minor endo and adeno back in Feb of this year, I am 35. I have had symptoms of these since the birth of my second child at 29, I have also heard of young women who have not had children having adeno. My symptoms started out as pain with intercourse, and that was my main symptom for years, then I started feeling like I have a bladder infection much of the time (with no infection) and back pain, and sharp pains in my uterus and right lower quadrant. I have gone to my regular ob/gyn after the birth of my son and complained that I was in pain with intercourse and something wasn't right. She did an internal exam and dismissed me, saying I have nothing gyn-wise wrong with me. I suffered for 5 years, until I finally decided to seek out a specialist in woman issues, and he took one look at my symptoms and told me what I have is gyn related and he was going to find out what was wrong with me, he was sure it was endometriosis and scheduled me for a lap. He was supprised that he found only minor endo and also noted that my uterus was boggy and on the large side of normal, saying that I am showing the signs of having adeno. He did laser out my few spots of endo, and it made me feel a little better, but the pain did continue, making me believe that the majority of my pain is from adeno. I went back to him a week ago to figure out what we can do treatment wise. I told him I have decided I will not do Lupron, so he said that leave either progesterine treatment or hystorectomy. I am trying the progesterine pills, on day three, so too early to tell if it will work, but I think I am feeling a little better, if this doesn't work then it's hystorectomy for me. How old are you? If I were you I would get a second opinion, seek out a specialist, this guy sounds a little old fasioned. Hope this helped. Debra

HI DawnRae, I am not sure if this will help you or not but here is my story I am 35, I had a TAH/LSO 3 and 1/2wks ago . when my hyst was scheduled it was for adhesions and my left ovary kept producing cysts that would not disolve on there own. I have never had children 2 misscarages one that resulted in me having to have a D&C, 2 ectopic pregnancys that also resuted in surgery as well both abdominal. and 2 Laps one for cysts on my left ovary one for severe adhesions. my hysts was my 6th surgery. and I was one of those women that did not know they had adeno until the path report came back from my hyst it never showed up on ultrasounds, MRI'S or even when I had my last Lap back in Dec. and if was your second opinion and you are not happy with it I would go for a third. when my pain started getting to be more than I could handle back in late Aug of last year. I had to fight to get my hyst. 3ER visits. then my doc thought I had endo and wanted to put me on lupron and I did some research on the lupron and did not think that it would help me. and refused to put my body through it. after my 3rd ER visit my doc decided to do a lap to see what he could find. what was found was alot of adhesions. so the lupron would not have helped that. pain came back 2 months after my lap. so we decided to go ahead with the hyst and after the path report we found that I had extensive adeno again the lupron would not have helped that either.and I don't know if all my surgerys contributed with me having the adeno. but I am sure glad that I stuck to my guns and forced the doc to do more than just put me on the lupron. if not I would still be in pain right now instead of on the road to recovery. sorry this is so long but I have a long story. take care and keep fighting untill you get the result that is best for you. there no reason that you should have to suffer with the pain and the not knowing. Take Care, Cathy

Thank you, ladies, for giving me so much information. On the basis of what I have learned here and elsewhere, I am saving my pennies (my meagre paychecks, actually) for an outside consult with an independent gynecologist. It will be expensive, but if I can find someone who has significant experience with adenomyosis, I believe it will be worth the cost. It seems that there is remarkably little known about adeno, why or when it starts, or exactly how to diagnose it. Why isn't it surprising to find yet another woman's disease that the medical establishment doesn't seem interested in studying?

Thank you again for the wealth of information, it has been enlightening.

Dawn