sccode - Sorry you have endo; that's an awful, insidious disease! I didn't have endo.

My pain is from my spine compressing and my rib cage falling towards my hip bones. I even have a crease 2 inches above my navel as evidence of this compression. You can watch the video listed on my profile to understand the skeletal, anatomical, and hormonal effects of hysterectomy.

I hope you're able to get some relief from your endo without resorting to organ removal!

honor - did you have your adhesion surgery? I hope your recovery is going well and I hope it helps the chronic pain! You'll have to keep us posted on that.

Do any of you also have:
Rib cage pain?
A squeezing feeling in your chest that's not painful?
Pain along your spine or spinal stenosis?

Sometimes I feel like my lungs don't have enough room. I don't get short of breath but there's a squeezing feeling in my chest right at my bra line.It happens on both sides but not usually at the same time.

Sccode, I do have endo but my pain is not from endo. This is "bone pain." (Only way I can describe it.) My endo pain feels different. Sorry I can't articulate more, but I can tell the difference in my body. This type of pain feels more like I have broken something, unlike the cramping pain I get with my endo.

bledpub - Since you said the pain in your pelvis feels like bone pain, is it in your hip bones? How long was your surgery? You're in a convoluted position during surgery with your legs up by your head so this can cause pain for some time. Hopefully, it will settle down. Lack of hormones can also cause joint pain. Are you on HRT or will you be starting it if you aren't yet?

I had my hysterectomy in August so it hasn't been a year yet. I didn't have a complete hyster so I don't need HRT.

The pain started about a week after the procedure. It's in my pubic bone area and radiates down to my hips. It's really excrutiaing, especially if I move around a lot. It feels deep and sometimes I feel like if I crack my hips (I lay on my side and slowly lift one leg up in the air until my hip "cracks") it will help. It doesn't help, but that's the way it feels. There are lots of pressure points on my hips and pelvic area.

While he was doing the procedure he told me that my tissue was in "poor condition." He asked if I was a vegetarian. I'm not and actually have a very good diet and take multi-vitamins. He said that whenever he tried to move or clamp my tissue it disintegrated. He wouldn't elaborate on this and I wish I'd asked more questions at the time.

bledpub - Now that you mention it, I remember you talking about that elsewhere because I thought it sounded weird. You can get your medical records. The surgical report may also shed some light on the hip pain you're having.

That's about how long ago i had a full vaginal hysterectomy too. Around November I started noticing severe lower back pain, can't sit, can't stand, it will hurt to walk. Never know when it will be unbearable. It is in my lower back and buttocks and will radiate down my hips and thighs. At first I thought I pulled something. This started with sharp pains in my hip. The Doc dismissed sciatic nerve. I purchased a new computer chair, a memory foam mattress, relief is to sit in a position where no pressure is on the area. Ibuprofen does nothing.

In 1996 when my pain was still being diagnosed and doctors still took me seriously.. ugh.. they decided that if they removed my right ovary, it would significantly diminish the distress (this was at my local ER). They gave me about 15 minutes to decide and no time to research. I was in so much pain that I was screaming, even with the pain medications they gave me. So, I decided it was worth a try.. my pain not only did not diminish but I think it got worse, especially around my period. Although i hate to hear others are in the same boat.. suddenly it is nice to know I am not crazy and not alone in this!

I did have surgery in Nov, it didnt help my pain at all, I didnt have a lot of adhesions, I did have some covering my appendix which was way out of place, she moved it back and put adhesion mesh over it( why they didnt just take it out, I dont know)there was no endo.
So weird that all of us have low back/ pelvic/ hip pain and the lady that that said poor circulation on thighs, my thighs hurt to the touch, for years, now hurts on arms, around knees, gyn said fms, but I dont have the fatigue, headaches, etc that go w fms.
I take oxycodone 5xs daily and sometimes that doesnt even help the low back/pelvic pain, my life sucks.

Wow.. I'm so thankful for reading this.. in April I will be opened up for an additional lap, and the Ob talked of waking me and discussing a hysterectomy... I really don't want to complicate things worse by removing organs and making my list of symptoms longer & more painful. I have surgery on the 16th & currently take 20mg oxy 2x a day and 2 Norco 3x a day... I feel like my life revolves around this pain & disease.... I'm trying to be realistic & know this surgery will not "fix" me, but hopefully put me closer to good health. My family and especially my husband miss the Samantha they used to know. Pain free, laughing, and enjoying life.. not the lady that wakes every morning in pain, throwing up everyday ... having to decide activities based on how I feel rather than just living and loving life.
Samantha

dont do it, a hyst, it is not a cure for endo, I had it come back on bowel, bladder and ureter, wish I never did it. I now have pain everyday, where before hyst i only had pain 2 wks out of the month, I would do anyhting to have that back, also major hormone issues,slamming into menopause at 37 is not fun, thought I was going crazy!

bledpub: even though you have an ovary it has not uterus(blood supply) it will stop working, you will know if you start gettng hotflashes, vag dryness etc, you can do a blood test to see if its still working. If you need hormones make sure to do "bioidentical".

I'm SO sorry for all of you who're suffering! I know endo is a tough place to be and anyone with it just wants the pain to end. But as honor said, it's not a cure and the relief is oftentimes short-lived. Not only does the endo and its pain oftentimes return, but you're left with the many adverse effects of hysterectomy - an assault on your pelvic integrity and skeletal structure (your "intact" figure), back, hip and rib cage pain, loss of libido and sexual response, and many others. And if your ovaries are removed or fail (50% chance) the awful hormonal sequelae ensues. Please be sure you're 100% comfortable with the trade-offs before going into that operating room.

BTW - If you do go into surgery and don't want organs removed, change the consent form and make sure the surgeon signs and then get a copy. Many of the consent forms give the gyn surgeon carte blanche to remove the uterus and ovaries. And it happens quite frequently especially with ovaries! My organs were unnecessarily removed to train gyn residents. All that needed to be removed was a benign ovarian cyst.

I urge anyone considering hysterectomy to watch this video of the lifelong functions of the female organs - http://www.youtube.com/watch?v=Ff5IOSj1l7w.

Scary? Yes, but being de-sexed IS scary!