Lobular Uterus/Adenomyosis - Actual DX

[lilly64]

Ok, here is what I've been writing for the past three weeks for my symptoms for what I thought was an ovc.  However, I now have the actual report and I'm more concerned about the topic I'm threading.  Does anyone have any history/info. about this condition? I do have an appointment with a new Dr. - a gyno/onco on Jan. 22nd as my regular gyno is not listening to me about the EXTREME pain - go figure. Here are the symptoms as per many of my posts:

I have an appointment with a new Dr. - a gyno/onco on Jan. 22nd. I really am scared and don't know what is going on. Three weeks ago I went to the urologist with severe cramping, side/back/groin/leg pain on the right side. They thought it was a kidney stone. It isn't - it's lobular uterus with adenomyosis and a right ovc (had CT and vaginal US). I am very exhausted (I nap 2-3 times per day). It's still mostly on the right side, but is also on the left. I cannot function. I have been taking Vicoprofen and it doesn't help much. I am also very swollen and bloated and my bowels are all messed up - extreme constipation with nausea (awful today).  Please help with any info on my newfound condition.  Thanks.

[lilly64]

You really should get on a normal diet; and i don't mean diet, diet; i mean regular food.  I really don't have much of an appetite lately, but I still eat my share and try to eat healthy.  Of course the dr. at the ER said that the cysts could not be causing the pain - he thought it was diverticulitis (inflamation of the colon).  The ER docs really don't know anything about gyno issues - I was trying to educate him on some things, but he didn't really listen.  I can actually feel this one on the left side now and I look about 4 mos. pregnant (my uterus is also enlarged from the adenmyosis) - not real happy about that as I'm quite particular about my appearance!  He ran all sorts of blood work (but not CA125, which I meant to ask for - damn) so I need to call the ER for the final report on those.  This morning, and a couple times within the past few weeks, I have been experiencing a fainting, chills feeling that scares the **** out of me.  I finally figured that when I get these attacks I need to eat lots of fruit.  I first thought they were anxiety attacks since I'm prone to those - but these are not anxiety - they are a little different.  So now I believe something is out of whack with my system b/c of the gyno issues like hypoglycemia or possible diabetes.  That is why I want the full blood work results.  This morning I ate a grapefruit and a glass of V8 and felt better almost right away!  Amazing was proper food will do for you - so I hope you get off the liquid an onto some fruits, veggies, meat (steak sounds great!), and fiber.  I go to the specialist on the 22nd as well so keep in touch and we'll compare notes!  Best of luck!  Lilly

[Ms_Makita]

I hope your feeling better since sat,5 days is a long time for bowels not to move..very painful!thank God they are getting to bottom of your pain! I would of done same thing.I go to ob-gyn specialist next monday the 22nd,so they are moving as fast as they can ,just tired of waiting,but from reading on here everyone has had a wait.I'm starting to feel better,maybe it is because im eating more varied diet and not feeling so weak and tired (having steak dinner tonight..woo-hoo!)trying to get off of liquid diet ,ensure,been on it for 10 months,best thing I need right now is proper food to get back on my feet,"if" it is cancer last thing I need is a weaker immune symstem! They arnt saying it is,but just the thought scares me, but its unlikely (complex cyst)but my whole right ovary is enlarged golf ball size ,but cyst itself is only 1.9cm,how could something so small be painful,lol,but I knew other woman with grapefruit size..OUCH! these things are painful,going on 4 months with it so its a good sign it isnt enlarging,right? just hoping it goes away on its own..nomore laparscopy's! We will get back on our feet soon,nomore pain! keep in touch!*hugs* Stephanie

[lilly64]

I went to the ER Saturday night b/c I hadn't had a bowel movement in 5 days. I thought I was going to die in the ER - pain was unbearable from the blockage and my back. They cleaned me out and did a CT with contrast. This CT showed the right cyst had dissolved, but I now have a cyst on my left ovary measuring 3.5 x 2.4 cm. That grew in about 2 weeks unless the original CT and ultrasound confused the sides (which i tend to think is the case). Now have alot of left side pain, but the right side pain continues. I believe the adenomyosis is causing all of the pain, but we'll see when i go to the dr.  I also presented in the ER with a low-grade fever - 99.5.  So what that is about who knows.  I believe you should go to the specialist - that's what I'm doing on the 22nd.  Good luck and let me know.  Lilly

[Ms_Makita]

Hi,hope your doing ok! how are ya feeling? I'm still having fevers on and off,low grade fever ,then chills.My dr appt was fri with pcp who told me I "worry" to much and its nothing but my "nerves",well **** would like him to feel this pain for 1 hour and see how he would deal with it.I'm mad at all dr's,,none are taking this serious and want to play wait and see game.He said he wont put me on hormones "incase" it is cancer,but then says I doubt it is ,well heck,go in there and figure it out than to make me wait 8-10 weeks and go insane in the meantime ,lol,but he at least referred me to a gyno specialist,so I suppose he is doing the best he can,I just hate the waiting and pain.It takes toll not only on your body but your mind as well,so maybe I should go to shrink now,lol.Time for nap (this fatique is awful)take care,keep in touch,your in my prayers,
               Stephanie

[lilly64]

i believe lobular means larger and thickening of the uterus.  upon my google search, it appears this condition could mean anything - much like cysts; they don't know until they go in, although it does indicate that MRI is very helpful in determining the extent of the condition.  It also indicates a usual hysto. if the symptoms are unbearable (like mine).  Will know more, i guess, when I see the Dr.  My husband wants me to go to the ER tomorrow, but I don't know - it's such a pain to go there.

MS_:  I hope you still don't have a fever - this would require immediate attention and i'm concerned that you're not getting it.  Fever, chills always means infection.  Good luck to you as well and i'll keep you posted.  Get that fever figured out!  Lilly

[Ms_Makita]

Hi! adenomyosis is painful ,but harmless,some of the endometrial tissue that lines the uterus begins to grow within its muscular walls,uterus in enlarged and tender (could explain groin and rectal pressure and pain)or hard time moving bowels if the uterus is enlarged it will press up more against rectum.I'm not sure about Lobular Uterus.You have few things hitting you at once no wonder your in so much pain!!!
   I have ultrasound results back from dr today,says "abnormal" he is a lil concerned and wants to send me to gyn specialist...whew,but told me he doubts it is anything to worry about.I posted a new thread on the results.Pain is pretty bad tonight,gave me vicroprofan but it dont help,time for some chamomile tea and nap! Hope you feel better soon,keep me posted,your in my prayers,*hugs*
                   Stephanie

[Shellhall]

What is Lobular Uterus..?

[Shellhall]

Well I have an Appt for Surgery on the 19th with the Dig. of Endo and Adneomyosis... They are doing a LAP and Hysteroscopy and the Doc says that he will not know until two weeks after this if I will need my Uterus out... From what I have read is is a real cruel diease to the Uterus... Do a google search on it to find some answers... Good Luck

Shelley