Endometriosis Community
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Avatar universal

adenomyosis vs. endometriosis

I have recently been diagnosed with adenomyosis and endemetriosis, but I'd like to know if those 2 are what's really causing my pains for sure, or if they're the only ones? I'm 47, married but never been pregnant.   Which specialist should I go to other than a neurologist to get an order for MRI to find out conclusively what is or are ailing me? Who among the specialists I've seen thus far should I go to ask if they could request that an MRI:be done?
Genreally I have pains on the right side of my body from neck to toe. Becasue I have such other symptoms from diagnosed conditions (fibromyalgia, costochondritis, either gastritis or ulcers, recovering from my 1st surgery for ruptured appendix in Feb 2008, MPS on neck & shoulder which is an old ailment diagnosed about 8 yrs ago now recurring, mild scoliosis, lumbar spondylosis), it's difficult for me to stop being curious as to the culprit/s for my pains until I get an MRI.  My biggest fear is I might have some form of cancer somewhere.   I'm always in pain especially beginning Sept-Oct 2007, and since after my surgery for ruptured appy in Feb 2008 to date..
Consistent with my latest efforts in the quest to discover what might be ailing me, I went to see a urologist recently who ordered abdomen CT scan. CT scan impression: Right adnexal cyst with minimal pelvic ascites (and unremarkable CT scan of kidneys, ureters and urinary bladder). Among other findings (with history of right flank pain), a hypodense focus measuring 4.0 x 2.1 x 3.0 cm is seen in the right adnexa.  Also minimal free fluid in the posterior cul-de-sac. Everything else appeared normal or unremarkable.  I presented the findings to my OB-Gyn, who in turn ordered transvaginal ultrasound.  (Routine pap smear was ordered week earlier and results showed nothing unusual.)  Ultrsound impression are the ff: Diffuse adenomyosis, intact endometrium, cystic follicle (right overy), normal left overy. Others: (-) fluid in the cul-de-sac.  OB-gyn's opinion: Adenomyosis and pelvic endemetriosis.  Sugggested treatment:  GnRH Antagonist injection for 6 months or in the alternative, progesterone, also for 6 months.
I'm tempted to go for the GnRH treatment because of the persistent pain, but upon research on the net, I found the  GnRH treatment or even the progesterone treatment confusing as to its efficacy and appropiateness considering I don't have heavy bleeding but only knife like pain in the pelvic area and a specific spot below my appy surgery scar. I'm also concerned about the side effects especially irritability, osteoporosis-related stuff, other side effects of menopause which may result to other forms of pain because I'm already in that state of pain and don't need to take additional steps to reach a pain rating of 10.  
Please advice best steps and measures. Currently I have a Physical Therapy program to address fibromyalgia pains (I have 18/18 of typical tender points according to the physical med & rehab doctor).  I'm on a 1400 calorie reducing plan prescribed by my endocrinologist which is also friendly to the diet suggested for adenomyosis sufferers (based on my research on the net).  I'm exerting best efforts to exercise at least 2x a wk or more with not much success because I'm often depressed or have low energy bec of the pains).  My lumbar and pelvic pains are still killing me most and my on and off right elbow & forearm pains as well.  But those aforementioned areas are relatively more painful only relatively.  Because actually there are pains focused on my entire right side, plus pain on left side of breast bone, upper left side of my buttocks.and left hip.
I've alreasy gone the road of treatment using meds, specifically  for my fibromyalgia pains such as  xanor + lyrica (I'm allergic to this, developed recurrent mouth sores), tofranil + tramadol (gave me pounding on chest, nape and scalp plus, tremors of head though not observable by a third person, inability to sleep for 5 days except for 10 minute naps), cymbalta + tramadol + clonazepam (all made me sleep 18-20 hrs aday but successfully relieved me of pain for 2 1/2 months until my body just rejected the meds preceded by nausea just before actually vomitting them all one day).  I used to take omeprazole for my hyperacidity until the day I decided to stop taking all meds the day I vomitted.  I continue to use claritin for my allergies as needed, rivotril to help me sleep at night when pain is too much, orlistat to help in my reducung plan.  I'm open to herbal meds though and plan to take primrose oil, vitamins E, B complex & C & others appropriate for my condition.  But I'd really like cancer ruled out.  How do I get that request preferably from my HMO accredited doctor?
4 Responses
211043 tn?1337054301
I'm baffled how you were diagnosed with adenomyosis and endometriosis without a laparoscopy.  Generally, the only form of endo that is visible through ultrasound is an endometrioma.  The rest of the time, endometrial tissue mimics the tissue which it is attached to, and therefore cannot be seen through imaging techniques.  This is why a lap is necessary to find it.  As far as adenomyosis goes, I was not diagnosed with that until my lap as well, when they were able to biopsy the uterine wall and confirm that endometrial tissue was growing within it.  

I personally am quite astounded at how quickly these doctors are willing to induce menopause in women (GnRH treatments) without knowing for sure what's going on, and equally shocked at how many women go along with it.  That's not to say that it isn't the right route for you to take, but you may want to let them have a look inside to be sure.  It will certainly help with your pain if it is the case.  I just had my second lap on Friday, and I'm up and around - should be back to normal in a few days.  

As far as cancer, they can do the CA 125 blood test, but certainly they can get a better look and be able to biopsy whatever is necessary if they take a look around with a lap.  

Something you may want to look into to help you with all of your ailments is accupuncture.  Lots of people have success with it reducing/eliminating their pain.  It has been around a lot longer than western medicine! :o)

best of luck to you
Avatar universal
Um, do you have about fist size clotz come out on your period anything? That happens to my sister but we don't know why and she refuses to go to the doctor. Should we get it treated? What do you think it is?
Avatar universal
No, I don't get fist-sized clots during my period but smaller ones yes.  It makes the menstrual period rather more painful than usual when I do get the clots.  I have a varierty of problems lately during my period since last year ranging from heavy bleeding to spotting in between periods, to shorter cycles (21-23 days from what used to be 30 days), to light yet painful periods.  One of my OB-GYNs monitored my cycle duration last year and was ready to perform a D&C if I happen to have my next period within less than 21 days which never happened. I'm not sure whether your sister neeeds to see a doctor.  I've been to so many and I'm more confused now than when I didn't bother to see any.  I'm still in pain.  But then again, better to err on the side of caution.  Just don't be a hypochondriac. I say listen to your body.  If the discomforts happen too frequently or become even slightly debilitating, it's probably time to see a doctor.  
Avatar universal
Thank you.  Which specialist should I go to get a lap? I haven't beeen too lucky with OB-GYNs.  should I go to a surgeon or gastroenterologyst? Other specilaists?  
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