Adenomyosis and Pain!!

Hello ando group. I just wanted to vent today about how awful I feel. This is one of the worst days of pain I have had with my ando. I have a noticeable lump on my right side that hurts so bad when I touch it that I could pass out. I can barely move my right leg. My "period" should be starting today, so I am a few days away from relief. I say "period" because I barely even have any bleeding since my ablation, but the cramping and pain are nearly intolerable. I have put off having a hysterectomy for a while, but I am finally going through with it in June. Because I am a glutton for punishment, I pushed back my surgery date so I can teach summer school. Right about now that is seeming like a pretty stupid thing to do. The end is in sight however, so I will hang on. It's nice to have a place to vent!

Hello All,
I just had my 6 week post-op appt. with my dr. this morning. She gave me the all clear for resuming normal activities!!! I have to tell you, I feel sooo much better since having my hysterectomy, and wish that I had insisted on doing something sooner. I just figured that what I was experiencing was part of getting older, until the last six months when my periods became excruciatingly unbearable! When I went to my Dr. in November due to the pain, she felt my uterus, which had grown considerably since July, and said that I needed to have a hysterectomy. I was then scheduled for an Ultrasound which showed a cyst, small fibroids, and some "dark masses" that could not be discerned. Unfortunately, I had to wait 4 more months, the last month almost unbearable from pain. I could barely get out of bed each morning, and the pain went from being before and during my period to all month long. Today my Dr. told me my pathology report said that I had severe adenomyosis, some fibrous masses, and a swollen tube and ovary, along with the cyst, and severe scar tissue. I keep thinking, why did I live with this pain for so long??? Thank goodness, I no longer have to. It is almost as if we think pain is how it is suppossed to be, but, it is not! Hope you all have a great evening

rocky56 - thanks I was starting to play that mind game - well is my pain really that bad to have surgery??? I am on pain pills maybe I can just keep taking them -- I'm trying to convince myself to back out - just fear

clairebear... i thought that way last year when my whole thing started... i took the pain pills for 6 months and it was around that point that i decided it was very very bad for me. those pills, i think, if taken for too long can be almost worse for you than anything. plus, they're addictive... and i don't know about anyone else, but i feel like i'm losing my mind sometimes when i have to take them a lot.

surgery is an important decision though that only you can decide for sure if its the right move... i just thought i'd add my two cents about the prolonged use of pain pills... for me too they really started tearing up my stomach... after so long i just felt like i stayed nauseous all the time.

good luck with it all and i hope it all works out good for you

I agree about the pain medication, I have a friend who has chronic pain from a back injury and has been on pain medications for years, she is now suffering from major complications due to prolonged use. However, as you say, surgery is an important and personal decision that you can only make for yourself. I can tell you that while waiting for surgery, 4 months!!, I continued doing my yoga stretches and meditation, although modified, this did help me with the pain.

Wow, after reading all your stories I am just amazed because alot of your descriptions of pain and stuff match mine. I have a much different route in getting here though. After being treated for Interstitial Cystitis (with little to no relief), I went back to my ob/gyn who happened to be retiring. She felt I might benefit from a lap to just see if there was something else going on, since my treatment for IC was not working and I was not willing to go for DMSO treatments. But because she was retiring, she was not able to schedule surgery and I needed to see the new dr they had hired. I love this woman!!! After a very thorough exam and a test of whether she thought I had IC, she felt my pain was definately coming from my uterus and the surrounding nerves. After several trigger point injections with no relief she has agreed to giving the hysterectomy. I have been in pain for over 2 1/2 years and almost live on pain meds some days and have tried so many different treatments. And although I have no other dx at this time other than chronic pain, the way you all describe your situations sounds so much like what I have been going thru.

Thank you for sharing your story and making me feel that I am not crazy!!

Susan

ivy29 & rocky56 THANKS yeah I know they aren't good for me- my stomach is pretty much always nauseous and now they must be affecting my taste ability - water has a funny taste. So I know that surgery is the only option and I'm sure afterwards I'll be so thankful to be rid of this pain that I've become so used to. But I have 1 week to go and I just can't get over the fear!!

SUEQUE - YOUR NOT CRAZY!! I was diagnosed with IC also - the dr. did exploritory and found that the inside of my bladder was like red confetti all over - I did find relief from a prescription called Elmiron but am now pretty much able to handle my IC thru my diet. But unless they actually went in to look at your bladder I think checking other problems is very wise GOOD LUCK TO YOU

Sueque - Just as an FYI, last year around this time I started having bladder pain - almost unbearable at times. I was taking pain pills to survive every day and they ran test after test. They did a colonoscopy (to eliminate the possibility of intestinal problems), several MRIs and CT scans. They tested my urine over and over (negative for any infection or bacteria), ran tests on my bladder and did tons of blood work. After 3 gyns, 4 urologists (I even went to Hopkins in Baltimore, MD), 2 gastroenterologists and a couple regular MDs, the gyns all said it was IC and put me on Elmiron which didn't help at all. The urologists said it was my uterus. To make a long story short, one day in January 2007 I went into such severe pain they had to rush me to the emergency room. They discovered I had a 6mm kidney stone that had been partially blocking my urethra (and had been for months - thus the urinary pain) and finally closed off the urethra completely. They did emergency surgery to remove the stone and that was the end of my urinary problems but didn't help with all of the pain.

I still suffered severely from my period and it finally reached the point in March that I was in pain 3 out of 4 weeks of the month. Yet another gyn scheduled me for a hysterectomy in mid-April. I am 4 weeks out from surgery and still in some pain. I am also getting urinary pain again so I am hoping it is not another kidney stone.

Before you (or any of you) consider any kind of surgery -make them do a MRI and CT scan on both your pelvic area and your abdominal area and look for a kidney stone. My stone was in the lower part of my urethra which I realized after the fact that they had done the wrong test on that area which doesn't show kidney stones.

Sorry for the long reply but I wanted to share my nightmare for the past year with all of you so maybe you could learn something from it.

DC4ever-sorry you have to go thru all that!! Hope it gets better for you.