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Old 03-02-2006, 06:26 AM   #1
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Question cancer? adenomyosis? crazy?

Hi everyone,

My name is Jamie Kae. I am 30 years old and the mother of two fabulous children. I have been having quite a bit of pain for a long time now. Beginning last September, I had officially had enough. After a rough RN, a colonoscopy, a cover your bases diagnosis of IBS, 2 ultrasounds, a nice new family practioner and a real jerk of a gynie ... I really know nothing at all!!!

It feels like the day before my period everyday. Everyday! I have a steady ache in my lower left pelvic region. It seems at times that the pain radiates and I feel it all over the place. I am soooooo tired, I could fall asleep anytime, but can't sleep once I get there! Sometimes it feels like I am pregnant because something feels foreign in my gut. (Pregnancy is not even a possiblity) There are times when the pain is dull and sharp all at once. I feel bloated and full all the time. It seems like I have to potty every ten minutes. I feel compelled to sit on the potty all day long waiting for all my internal organs to fall out! (today is a particularly bad one as my period should arrive soon) Which brings me to my actual menstration which is brutal. Heavy, Painful, and with lots of large size clots! (ping pong ball or my ring finger) That is real scary! Last month I thought I was going to pass out at work with a client in my chair when one passed! I feel strangely aware of everything that happens in that region. Like I can feel it all. Maybe I am just weird.

Well, for the longest time I have tried to convince myself it was all in my head. But I tried a Doctor anyway. My colon is clean and actually really cool looking. They had to give me 4 shots to finally fall asleep and quit asking questions! So, it "must be irritable bowel syndrome." The pills for irritable bowel didn't do anything, so she sent me to have an ultrasound. I was told that they found something in the left ovary and that I needed a gynecologist. I couldn't find one so I found a great new family practitioner (that I really do like) who ordered the follow up ultrasound. She was the first person to actually talk to me and tell me what the radiologist had found. The findings from the ultrasounds were - a small solid mass in my left ovary, enlarged uterus with fibroid cyst and some thing where it splits at the top which I did not understand, and cysts on my right ovary. The family doc said with all the pain and a solid mass obviously we are worried about cancer and she sent me to this jerk of a gynie who told me I "wouldn't be sitting there if it was cancer and that my pain made no sense." Then he tried to convince my it was my bowels like the first RN...but since my colon was clean he jumped right to adenomyosis and the need for a laproscopy. Which brings me here.

So for a couple of days I tried to pretend it was all in my head again....that didn't work so I will have the laproscopy the week of March 13th. I agreed to go with the jerk because he promised to show me pictures! I am ready to scream with all this confusion and bouncing around. I just want it to stop hurting so I can be a part of my life again!

So much for a small introduction!!! Am I crazy? Where do I even post? What next? Why did one doc say it could be cancer and the next say impossible? Who pulls adenomyosis out of their hat like that? I have most of the symptoms for both issues. Why is this so complicated?

 
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Old 03-02-2006, 07:34 AM   #2
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Re: cancer? adenomyosis? crazy?

Wow! You have really been through it! First off, you are NOT crazy. There was a time in history where women's menstrual complaints were not taken seriously, but that time is long gone. I do not know a lot about this, but from what I understand the pain you have, especially associated with your BMs sounds like endometriosis/adenomyosis. You will have to have the lap procedure for a proper diagnosis. I am not sure if the cysts that they have found are a related issue or not. I do think that it is too bad that you are having to deal with a GYN that you are not comfortable with. Is there anyway that you can see someone else? I know there are a lot of hoops and red tape when it comes to health insurance, but if at all possible you really should be going through this with a DR that you are more comfortable with. I'm sorry that I can't give you more help. I do hope everything turns out OK. Best wishes to you.

 
Old 03-02-2006, 01:07 PM   #3
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Re: cancer? adenomyosis? crazy?

Hi Jamie:

Welcome to the boards. You are not crazy. This is so complicated because there is so much going on in the pelvis of us women. I am so sorry you having such a hard time.

Your history sounds somewhat similar to mine, only in my case I love my OB/GYN and am not crazy about my GP. In my case, my GP made me feel like my pain was caused by my emotions. I had to be persistent and nag him until he finally referred me to a wonderful woman gynecologist. She takes me seriously and has pretty much taken over my care...all we need the GP for is to sign referrals.

I agree with greenjppixie, I think it is important that you like and trust your gynecologist. Is there a chance you can get a new one? Maybe you could talk to your GP about this and she will find you another OB/GYN.

It sounds like already they have found enough problems to explain the pain you are having. Fibroids and cysts can cause terrible pain...all the things you've described. The laparoscopy may also find endometriosis and give a better idea if you do have adenomyosis. Adenomyosis is endometriosis that is growing inside muscle wall of the uterus, and can be tough to diagnose. Final diagnosis can only be made by removing the uterus...but the size, shape and consistency of the uterus, that they observe during laparoscopy, gives them a good idea. During this surgery, they can also get a better idea if you have more fibroids than they thought, or ovarian cysts, check for endometriosis, scars or adhesions left by endo, and take biopsies. You may want to request an MRI before surgery...those are very good diagnostically...I couldn't have one because I have a metal plate in my arm.

I had my laparoscopy in November and received a diagnosis of endometriosis. My doctor gave me my treatment options and I opted to have a total hysterectomy. I had that done on January 25. Now that I have that behind me, I will be going for an evaluation for a hernia and a colonoscopy. It sounds like you've already done that, so a lap is an appropriate next move, in my opinion. Other tests I had done before my surgeries were endometrial biopsy, CT scan and pelvic/transvaginal ultrasounds. None of those tests showed my endometriosis.

I can understand your frustration. I've been in daily pain and on pain medication for over a year. I've had to practice restraint when I've been treated like a crazy woman, I've cried many tears, lost the ability to be as active as I was used to, and missed out on many fun and important things in my life. I will get to the bottom of it and so will you. We will both need patience and persistence. And the ladies on these boards are so loving and supportive...we will be here to talk and answer questions if we can.

Best of luck to you...please keep us posted

Last edited by SRMom; 03-02-2006 at 01:42 PM.

 
Old 03-02-2006, 02:29 PM   #4
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Re: cancer? adenomyosis? crazy?

I too know exactly what you are going throuh. I was sick with constant pain like iwas always having my period, and like you when I have my period It was unbearable to say the least. I was also dealing with cluster of small ovarian cysts and massive ovarian cysts.

I also had a gyno who was my gyno for 20 years that wouldnt listen. I always suffered with severe mentral pain to where I would be bed ridden, had my first cysts at 18 and was told after I had kids It would all go away..well that never happened. By the age of 22 developed severe ovulation pain along with my severe mmenstral pain. I was put on naproxen Sodium 550. Was told to go on the pill, and I did but I just didnt like it. I decided to just deal with whatever it was that I was dealing with, but kept taking the naproxen. Since I never got my period every month I figured it was better for me to deal with it then take the pill and have my period every month and be in pain...Well ...then finaly about 7 years ago I went on the pill due to several reasons. For one, I was keeping the pregnancy test companies in business because I was constantly checking to see if I was prego because I was so darn irregular, and two, I had a MRI due to a back injury. It also showed my Uteris was Enlarged with a Mass. I was told to see my gyno right away regarding this. I did. he checked me out and said yes it is enlarged, but not to worry it is just you. That was his answer to me about all of my female prblems, but he said I need to go on the pill. So I did. I was on the pill for a total of 6 years and the pill ONLY worked for me for the first 4 years.
I started getting the severe ovulation pain again, bleeding in between, clotting again, and developing massive size ovarian cysts. I also felt like I was laways getting my period. The pain I mean..it was constant. As your doc, he kept blamming it on IBS..My gastro doc disagreeded, my GP disagreed. They felt I was PCOS and pssible Endo.
Well saw another OB and I was a severe mess at this time. (this was going on constantly for 9 or so months at this time.) Had a Lap and d&c. Found out my Uteris was enlarged and boggey, ruptured cysts on both ovaries and a severe case of Pelvic Congestion Syndrome. 1 month after that like SR Mom had a hyst, everything removed but my cervix at the age of 39. (this was almost 10 months ago) patholigy came back saying I had moderate to severe Adenomyosis (internal Endometriosis) enlarged ovaries both full of cysts (PCOS). It was the best thing I ever did. I dont have any more pain !!! Unfortunately dealing with menopause and anxiety due to the surgical menopause, but yah now, it is a heck of alot better than dealing with what I was going through previously.
If your OB wont listen PLEASE see another one !!! The first step is to get an OB that will listen, because if they dont listen they wont take the time to check you to see what is going on.

 
Old 03-03-2006, 12:10 AM   #5
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Re: cancer? adenomyosis? crazy?

Yes, definately go see another one. Ask friends or relatives who they see, word of mouth is the easiest way to find a good one!

 
Old 03-03-2006, 10:35 AM   #6
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Re: cancer? adenomyosis? crazy?

jamie kae,

I feel your pain (literally) and I am so sorry you are going thru
all of this. Your story sounds very similar to mine, except you might have a little more going on than I do. I have been suffering from endometriosis for
18 years, only it was just diagnosed 7 years ago. I have had 2 laps to have it removed and had a lot of trouble getting pregnant. I am currently having a lot of pain and my DR has tried me on different BC pills . I am having a lot of pain EXACTLY like you descibed, on the left side and my sono came back "normal". Even though I had 2 large cysts on the right ovary. I know for a fact that endometriosis can cause all kinds of problems including Bowel problems, so I would suggest you talk to the Dr about that.
I am so sorry that you are having a hard time with your Dr. I guess the fortunate thing is that I have been with ny Gyno for 12 years and I love her.
I really think you need to find someone that specializes in Reproductive Endocrinology and Infertitlity, they are really the ones who know about all of this. My gyno referred me to one for my laps becasue she admitted that wasnt her specilaty. Where do you live ??
I hope you get it all worked out and be proactive, dont let those idiotic Dr's push you around, ITS YOUR BODY. Ask them to do a CA 125 blood test, that is supposedpossibly to detect cancer in some women
Sincerely, Kim

 
Old 03-03-2006, 12:04 PM   #7
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Re: cancer? adenomyosis? crazy?

Thank you everyone for your posts. Sometimes it is easy to feel like you are crazy. It is so very welcoming to find out that I am not alone, the pain isn't in my head and in fact, so many other women feel the same or similar pain.

I am scheduled to do a lap on March 14 or 15 with the 15th being the most likely date. This doc has horrible bedside manner, but is very highly recommended skillwise by both other doctors and his patients. We have agreed that he will do the lap but if we still get a bad vibe or he tries to tell us it is nothing, I will demand a second opinion. I think over this week I have decided that if he is in there that he should biopsy whatever mass is in the left ovary so that I can sleep.

I will definately keep ya'll posted. I am so glad that you are all here! Have a wonderful day.

 
Old 03-03-2006, 10:58 PM   #8
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Re: cancer? adenomyosis? crazy?

I hope all goes well!

 
Old 03-04-2006, 05:15 PM   #9
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Re: cancer? adenomyosis? crazy?

I wish you luck !!!
The problem is, nobody understands the pain of Endo unless they have went through it.

 
Old 03-08-2006, 10:20 AM   #10
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Exclamation Re: cancer? adenomyosis? crazy?

Just got off the phone with Doc's office....My lap is scheduled for Wednesday the 15th at noon! Will keep ya'll posted!

 
Old 03-08-2006, 10:45 AM   #11
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willo1980 HB User
Re: cancer? adenomyosis? crazy?

Good luck with your lap! Hope you get some answers. Keep us posted.

 
Old 03-08-2006, 11:26 AM   #12
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Re: cancer? adenomyosis? crazy?

Let us know whaT HAPPENS !!

 
Old 03-09-2006, 06:30 AM   #13
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Re: cancer? adenomyosis? crazy?

Best of luck and hopefully they will be able to take care of a few things while they are performing the lap! Like everyone else has said, Let us know how it goes and may you have a speedy recovery, Jazz

 
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