Endometriosis Support Group

I have endo on my ureters. From what I understand, this can cause problems with peeing like you describe. I am sure it can also cause that pelvic pain. I have this exact pain (worse when laying down, worse when I have to pee etc.).
I also have adhesions and endo in my cul de sac/recto-vaginal cervical area. If you have had a lap, certainly this might have been missed and might worsen (my doc said I have very tiny almost non-existent endo implants, but massive adhesions that worsen with every surgery). I can say that many of my pain problems come from the endo there.
NOTHING will be visible on ultrasounds. I also had about 3 a year from ovary pain until the surgeon kindly explained to me that single sided pelvic pain is common with endo, adhesions and especially endo in areas like the ureter. I have not had one since, since I know they are a waste of time.
See if you can track when the one-sided pelvic pain occurs. If it is during ovulation this is common and nothing to worry about.

I have chronic low back pain which the docs say are referred pain and chronic inflammation. It is not ureter related, as then it would be high on my back where my ribs end.

Some suggestions to help with the pain:
-heat. It is all that helps my lower back. Right now I am even wearing a heat wrap on my back (thermacare sells single use ones you can put on your low back). hot showers, heating pads....
-avoid bending at the waist at all times.
- do stretches lightly and be sure to exercise doing core strengthening exercises whenever you can
- if you can take drugs, anaprox helps reduce the inflammation to stop the referred pain into your low back.
- avoid all alcohol and caffeine. They just worsen ALL of the problems you describe.

Thanks Utah!!
Yes i have had 2 laps...the last one it will have been a year ago next month. I have always thought it possible that I have endo that was missed in the cul de sac area as I often have external vaginal pain!
Yeah I know the endo wont be seen by ultrasound...I was doing it more to look for cysts or a twisted ovary. My dr also told me that it is possible to have endo inside the ovary...but it's impossible to know for sure unless 1) you take it out and cut it open, obviously rendering it useless to you anymore reguardless of if it has endo or not. or 2) the endo grows beyond the compacy of the ovary and either is caught on ultrasound by sheer ovary size or it makes the ovary burst...which doesn't sound nice!
It use to be pretty consistant with ovulating and menstruating (when I was 18 I ended up in the ER for ovulating! haha! The sac that the egg is in had burst open in that little tiny area between the ovary and tube...and though that amount of fluid was miniscule...I thought I was dying the pain was so bad!!)
At the time of both surgeries (the first one only being 2 1/2 yrs ago)...I had no adhesions...only several tiny specks of active endo on both ureters. At my first surgery she found a large inactive (cuz I'd been on lupron) mass behind my uterus. After my surgery last year I went on the minipill. It was great the first three months but the 4th month I was in so much pain I stopped it. Then for the next 5 months my period came every 19-21 days...last about 2-3 days, heavy, clotty, painful. Then since aug my cycles have been 24-26 days...but last less than a day...one was less than 12 hours. And though maybe a few hours are moderate...they are really rather light for my normal. So bizarre!

have you checked for pelvic congestion ? you will need a venogram CT dye injection by an interventional radiologist.
symptom is preassure and a full feeling bladder etc. i get this. and also i can feel 'something' inside (which i know now is my pelvic varicose veins)--(pelvic congestion').
i have gonadal (ovarian) veins, iliac (behing uterus in culdesac -- get lower back pain/preassure/fullness), and groin veins. pretty much every where.

i hope this may have helped.. its worth a check
xx

no I haven't been checked for that. I looked it up and one of the symptoms isn't true for me....it said that the pain gets better when laying down....mine gets worse then.
But I will talk to my dr about it. thank you!!!

mine desnt get better when laying down either. actually worse when laying. i would not go by symptoms 100% ever. its like with lower back pain when we lay down and the pain comes on full before it settles.

ok, yeah....mine is so much worse when I lay down. It seems maybe to feel more like pressure...but at times painful...not like stabbing pain...but sorta of just an overall painful pressure. Almost like if you have to pee extremely bad but you have to keep holding it (for lack of a bathroom around)....and when you finally get to go...there is a sorta numb pain after you have emptied your bladder....sorta like that is what it feels like. When I lay down it feels so much worse...tons of pressure and I feel like I have to pee immediately...even if I just went and have just crawled in bed. Sometimes I will get up to pee 20 times in a half an hour. It sucks! I have found that when it's really bad I have to sleep propped up so I am not laying flat.
Not feeling that "thing" inside so much today. weird.

I get so upset and discouraged every time I read all of the stories that everyone tells on here. It just isn't fair what we have to go through!

I was also diagnosed with Interstitial Cystitis in January which has caused me to change my diet drastically to avoid "flares." However, so far nothing has helped. I still have to get up and pee a dozen times in the middle of the night because that is when it is the worst. Also, it is difficult at work because I am constantly having to go. I think my co-workers think I'm crazy! LOL

I have had adhesions and I'm pretty certain I have more now. I can tell the difference from prior Endo pain I had in the past which has not come back since having Excision surgery about a year ago.

Right now, I'm having recurrent cyst ruptures on my left side and it feels like I'm being stabbed with a fork when it happens. So, I understand having the numerous ultrasounds because you want to rule out other reasons for your pain.

I hope you find some relief!

Lindsey, thank you! Yes I have suspected that I have IC. Yes I too have to pee all the time (or at least feel like I have to pee a lot when maybe only a little comes out). I actually am dehydrated because I don't drink alot because that makes it worse. I had always heard for certain urinary tract issues you should drink more and that will help....but for me it makes it so much worse!! Yes my family and friends think I am crazy for all the many times I use the bathroom....and within a short amount of time. it's especially embarrasing if I am out with friends. I have to go again each time we are at a different store...or I go before we leave the house and again as soon as we get to the restraunt....and then once or twice while at dinner. ugh.
I can't remember what the test is for IC....it seems to me that I was suppose to have that test done while I was under for my last Lap...but it didn't get done. The Dr forgot that and something else she was suppose to do (I have HPV too and she was going to remove a couple warts while I was out too!). The surgery before mine had complications and I didn't get in for my surgery until two hours after I was suppose to....the surgery center had closed....while they were doing my surgery! So I think she was rushed. I was bummed and never was able to find another time to have that test.

Hi Christine sorry to hear you are in pain my endo was on my ureturs and my gyno removed it without damaging them but i have continued to have many other gyno problems.

yeah my gyn said she didn't want to remove it until the symptoms were worse than the risk of removing it. Doing ok today....not too bad of pain...still lots of pressure...and peeing alot!