Adeno...Endo...Or what???

I have been doing alot of reading on hyst's over the last week, and keep reading about Endo and Adeno...My doc is wanting to do a gall bladder suspension and take my uterus, but he never has actually told me what he thinks it is that is wrong with me!! Ive had severe bleeding and major cramping ONLY ON THE RIGHT SIDE since I started when I was 14 years old! I take two days per month off of work so I can lay on the bathroom floor and vomit, I run fever of at least 103, I bleed and clot heavily anywhere from 7-12 days and may go two months before another period, I have a slanted uterus and have some pain every once in a while during intercourse, sometimes I bleed afterwards too...My gyn I used when I had my first child said I had some grape sized cysts on my right ovary that would go away after I gave birth, no one has ever said anything else about them...the gyn that I have used for the last 4 years just tells me that the cramping, heavy bleeding, vomiting and fever are all normal....Its not normal, its excrutiatingly painful!!! It wasnt until two weeks ago I went to my family doc for pneumonia that he asked me about my periods and the pain, when he started looking at the irregularity of my periods...He seems to be the only one besides me who is concerned about this...He is scheduling alot of tests this week and hopefully I will know something soon.....I would actually look forward to at least a partial hyst...I see it as a way of some relief!!! Can anyone give me some information as to what could POSSIBLY be going on? Im going into this totally blind, I know nothing about it and would like to get some input...Ive been reading up on all kinds of "female problems" and Im getting some good info. I would just like to know some questions to be asking the doc, since I dont know where to start....Your input is greatly appreciated!!!

Hi Vera!

I think you are very smart to continue your pursuit - I cannot get over the DRs who said your symptoms were normal.

Adeno, from what I understand, is not really diagnose-able until after surgery, since it's nestled in the uterine wall. The extent of Endo, if present, can be the same way.

I hope you and your DR come up with the best possible solution for you, sweetie - and it certainly would not hurt to get additional opinions so that you can explore any options there might be.

Sending s your way; please let us know how things progress for you!

You may need to write down your symptoms and keep a journal of how much you are going through per cycle per day. Also write down what you took for pain and how long it worked or didn't work for. Heavy bleeding can mean different things and some clots depending on the size and number can be considered normal or not normal. I wrote everything down and handed my dr. a sheet with my symptoms. For example...
Going through a super tampon and pad in 20 min
Clots ranging in size from grape to the size of a fist or such.
Taking vicodin every 4 hours
Missed work/ school because pain was to bad
Bladder pressure can't empty completely
Pills/hormones don't help as I tried many different ones and got terrible side effects high b.p. headaches.

I would suggest you get another opionion Adeno can usually be diagnosed only after a hysterectomy. Here are a couple links you can look at.

http://www.netreach.net/~hysterectom...denomyosis.htm
http://www.obgyn.net/AH/articles/Adenomyosis.htm

Also I've read in some sites that a partial or sometimes called sub-total or supracervical hysterectomy may not be the best because adeno or endo can spread down to the cervix. Total hysterectomy involves taking uterus and cervix. Ovaries if taken would be an oopherectomy. Good luck in finding some answers.

Hi Vera,

I agree that you need to seek a second opinion from another gyn. You need to know why a hyst is being recommended ... there are several different possibilities for your problems, but only a gyn can provide a diagnosis. Your symptoms sound a bit like endo, could be adeno, could be ovarian cysts, could be fibroids. Only a doctor can tell you for sure.

Adeno usually is not diagnosed until after a hyst when the uterus is examined by the pathologist. That's how my adeno was found ... my gyn never mentioned that possibility prior to surgery. Endo usually can't be diagnosed for sure without a laparoscopic procedure. Fibroids can usually be detected with ultrasound.

Keep reading and posting and try to get some answers from your gyn or a second opinion from another gyn. We'll be here to provide support, any way we can help.

Beth

Well, tomorrow afternoon I should know more! I go to the doc at 220 PM! Im being torn....Im excited to find out about what is possibly going on so I can possibly make the right decision, and a little nervous too! I welcome a hyst because of the problems I have had, but I dont really have a good support system! My job is very stressful, we are short handed and have all had to work alot of overtime, I worry about who is going to work my overtime while I am off..Im a single mom and worry about who is going to take care of my children while I am recovering..I feel like I need to get ALL of the answers so I can make the best decision, and I know I will never have ALL of the answers. I think Im just stressed out over finding out less than two weeks ago that my doc is wanting to do a hyst after he gets me over the pneumonia, which I cant seem to kick. Im afraid his next move is admitting me so that I can get over this to prepare for the hyst.

This site has been more support, and given me more info than my own family! I think I have gathered alot of good info to confront my doc with tomorrow, I have it all written down, and I think that I will feel more at ease once I have an idea of what may be going on. I think I have rambled on long enough, wish me luck!

Ill keep you all updated!

Hi Vera

Hope everything goes well at your doc appointment. Keep asking questions until you are sure you have all the information you need. It's your body and you need to know why a hyst is being recommended.

Best of luck!

Beth

((Vera)),
Good Luck tomorrow at your appt I cant believe that a Dr actually said all that was normal Bet if his wife or Mother was going thru that it wouldnt be normal! I was dx with Adeno after my Hyst, I had periods that lasted for weeks, clotting cramps, I also had Fibroids as well. Those were found on an US tho beforehand. Here are some excellent links about Endo:

www.pelvicpain.com
http://www.hystersisters.com/forums/showthread.php?
threadid=8782
http://www.scmc.org/endo/html/question1.html

Please keep us posted.....

Gosh, reading about how cruel your Gyno is just makes my heart go out to you. If it were me, I would ask my doctor for references and find a New Gyno.

I am 2 months in post op and have no regrets.

God bless and I hope everything works out for you.

Renee

Well, I went to the new doc yesterday...after I got home I was exhausted! He of course wanted to know what was going on..I told him how everything has been progressing to this moment, he did the dreaded pelvic exam! He pushed on my right ovary and I thought I would scream!!!

He says my gall bladder has started descending, it will definately have to be suspended so that surgery is a go, just waiting on the results from the ultrasound before a date is set...My right ovary seems to have some pretty large fibroids from what he can tell externally.

Im scheduled for a pelvic, and gall bladder ultrasound on Monday AM. He said my uterus is lying flat instead of he way it is suppose to be lying so that may end up coming out as well!

This site has been so helpful for me in getting information and helping me figure out what questions to ask. This is still new to me and Im still a little afraid, but I feel better knowing there are others out there who can give me advice and support. Thanks to all of you!! I will keep you updated after the results come in!

Glad to hear you went to see a new dr. Uterus laying flat? That's a new one to me. Did he mention if it the uterus was hard or soft on exam? Good luck with everything and thanks for letting us know. We're here for you.