2 kinds of endo?

I was Dx in Jan 2003 with stage 4 endo and adenomyosis.
Along with extencive scar tissue build up and my tube has decenigrated! Plus I have polycystic ovarian syndrom.

I am scheduled for the full monty on March 18th.
(Sorry haven't gotten the hang of all the abrev's)

I never knew about endometreosis until the end on Dec2002 until I came across information while I was researching another issue(bladder issues) I was so surprised to find out how many women have it, but yet you don't ever hear about it.

I was the one who tecnically DX myself. All I had to do was to find the right Dr to verify my ideas. He did.
I took all the test results from my CT,US and IVP, once he seen I had all the right tests, he ordered the Lap.
That is when I received my DX.

But he also said I have adenomyosis.
I also didn't know until very resent, that is a more rare form of endo. I thought endo was endo.

So I guess I was courious how many others have both forms of it.
Or is it more comon than I have read about. Or does your DR just state you have endo and leave it as that.

My Dr didn't explain any of it. I read the official DR statement at my GP DR's office and she gave me the name. I went from there, even my GP didn't comment on the diference.

From what I read, about 40 to 55% of women can develope endo by age 70. So why do we not hear anything more about it?

I guess I just need more answers or at least some insight.

Thank you all,

Patty

Hi Patty,

I'm sorry that your doctors haven't been more communicative with you - the doctor who did my hyst was alot like that, too. If I didn't know to ask, she didn't tell me. And when I did ask a question, she didn't really want to answer. Since I didn't find HS until the night before my hyst, I didn't have any opportunity to read and research and ask questions of others. I'm glad that you found us in time to post some questions.

The link below will take you to some pages with much more detailed information, but basically, adenomyosis is when the endometrial tissue has invaded the muscle of the uterus, rather than growing outside of it.

http://www.hystersisters.com/vb2/sho...threadid=76157

I'm sure others will come along soon who have had personal experience with endo and adeno.

's

Karen

P.S. Please be sure to go back into your profile and add your surgery date so you'll be on the calendar and will receive a special greeting from HS.

I have both endo and adenomyosis...I have had endo for years..I just turned 33 and it was so bad by 20 that they really didn't think i could have kids which is did..i had the last one when i was 27. I had 3 kids...2 miscarriages...2 D & C's and a lap 2 years ago..but for some reason even going through all of that..I never had pain like I do now..Over the past 6 months..I have cramps when i wear tight clothes....and HORRIBLE pain when having sex so I had him check me again..he said i had a fibroid because my uterus was sooo big..but a very painful vag. ultrasound revealed no fibroid and then I was diagnosed with adenomyosis which i have never heard of.....so I will now be having surgery on Monday! I feel for you...everyone here is wonderful and helped tremendously..so keep reading the posts..they are great!
Good Luck!

Because I was DX'd with Stage IV Endo 22 years ago myself, I was a victim of this horrible disease for years. Plus fibroids, uterine polyps, and a uterine septum - a totally diseased uterus.
This is an informative website on what the Endo stages are and what it looks like:
http://www.obgyn.upenn.edu/IVF/Endotable.html

I had my Hyster. 1/31/03, and the Path Report showed besides the above, Adenomyosis as well. This I learned, was somewhat different than Endo, because this is not just distinct lesions. There's a branching of GLANDS that go into the wall of the uterus. This is a website that was helpful: http://www.drcook.com/adca14.html

The Endo Assoc'n was created years ago, and the folks there have done a great job with keeping the public informed of Endo and the research on it. I was a member for years, but only recently understood myself what Adenomyosis was.

I'm glad the surgery is over, and would do it again; only wished I had it done years ago.

All the best for your upcoming surgery.

Hi Pattyann,
I also have endo and adeno.I was DX with the demons this past June.My DR talked more about the endo then the adeno,I don't think that they have much insight on it yet.I do know that the adeno will make your uterus feel spongy in time.And i'm like you, i wish we would here about it more then we do.It's scary finding out you have something and they don't know a whole lot about it. But i know that you are not alone in this.There are alot of us who have both kinds.Take care and keep reading.There's alot of information on here.We're all here to help in any way.
Hugs and Best Wishes
JEAN ANN

I was in such hideous pain/cramps the last 3 years that I started researching a year ago. As a teen I was told I had endo ("try to have a baby as soon as you get married!" this to a 17 year old!) I got married at 22, we used birth control and got two kids in 20 months before we hit our third anniversary. So I was not so convinced that I actually had that, at that time.
Which is to say that I knew about endo since the 1970's, but the new pain was something completely different!!!! A Google search lead me to an Andenomyosis site. I requested an MRI to confirm it, which it did not, so I just did lots of lamaze breathing, pain killers for another year, since nothing showed up.
A year later I went in for my annual, happy that I actually had two periods in a row where it wasn't "biting a bullet" bad. But the bad news was that in the one year since the MRI, I had developed a chocolate cyst, a form of endo, that was 12" x 4" in size. And it was attaching all over, so everything was going to get removed. How could that happen so fast???
Andenomyosis is generally not totally confirmable except by examination, so I counted it a personal victory when my Dr. saw me after surgery and said "You were right, you did have Andenomoyosis too!"
There was web site about a surgical proceedure to have the anden. removed via cutting out that part of the uterus and stitching the rest back together. It generally forms on the backside of the uterus, which is why it often feels like your back is cramping.
It took some really advanced searching to find any information on the condition (spelling it alone is a doozie!) and I suspect that many women with horrible cramps have that condition. Pregnancy is supposedly possible after the surgery. No speculation as to why it happens. I did have both kids via C-section, but the incision of course was on the front, so I do not think that has anything to do with it. My twin aunts on my dad's side had horrible huge periods, ruptured cysts, and a cousin as well, so I think this may be a genetic thing. My mom's side had no such difficulties.
I have heard of many women having endo, two friends needing hysters in their early 30's, before having kids. My daughter has friends in their 20's who are fighting it as well, surgically, medically...I have seen documentaries of women who were just wacko and psycho with PMS and pain, and when they were diagnoised and opened up, you could see this stuff like gunk wrapping their overies to other body parts. The surgeon lazered the overies free, and the women/husbands said they got their lives back afterward, emotionally and physically.
One treatment is to chemically stop the periods (they did that to me as a teen, as I was having 7 day long heavy periods every 21 days), as the endo "dies off" without the full set of hormones. Sadly, some women just have it back full force after resuming periods. Heartbreaking.
At least for me it is all over now. I plan to keep an eye on the subject for my daughter's sake. Just hop on Google and type in Andenomyosis and you can learn a lot pretty quick.
God speed with your journey to recovery.

It can be awfully confusing, can't it? I'm two weeks post-op. I had a total abdominal hyst because of endo. The doc had seen endometrioma (large masses on my ovaries...a form of endometriosis) but didn't know about the rest of the endo until the surgery. I had it all over everything, but ultrasound didn't detect any of it...only the endometrioma. I'm also amazed that we don't hear more about endo considering how many women have to deal with it. I think we just have to do our own homework and know the right questions to ask. Are you considering hysterectomy? It's good that you're checking out this site...very helpful. Hope you get the answers you need. Good luck to you!