Can you have endo without severe pain?

[Tomicca]

Hello last year I suffered from some strange pains in my left flank and occasionally my right side too I was given antibiotics twice for kidney abs urine infections however no infection was detected in urine samples and the antibiotics made no difference. This went on these pains coming abs going for about 4 months and the only time they seemed to died down was for a week or two after my period. I was referred for an ultrasound on my kidneys, bladder, uterus ovaries tubes etc abs it did not show anything on the scan apart from a small amount of fluid in the endometrial cavity which was not thought to be of any concern.
The GP suggested the possibility of endometriosis abd to watch and see what happens. Two months l later I have been ok there has been a faint background pain that feels like it’s there in the background but not bothering me then it started up again around ovulation a couple of weeks ago.
Other symptoms I have which could be connected or not or bleeding after sex from ovulation to AF. I have lots of horrible brown sludgy blood spotting in the 3/4days before period and I’m getting large blood clots maybe two massive ones then a few smaller ones but all larger than a 50p. In general my AF hasn’t been bad pain wise but it’s kind of just lingering in the background on and off. I tend to have a stabbing pain when I’m ovulating as well some months are worse than others. Also my AF used to be pretty good but in the last couple of years they have been heavier. Due to the post sex bleeding I have been referred to a gynaecologist. Sorry if this is a bit long hope it makes sense maybe it’s a hormone thing I’m having?

From what you have said endometriosis is a Definite possibility, eg bleeding after sex, brown spotting, flank pain could be endo affecting ureters or bladder. Also interstitial cystitis can also give constant bladder pain. I have both as well as other conditions

Hello, I’m an Endo sufferer. The most important thing to say is that endometriosis pain is disproportionate to the pain. Some women have small amounts of Endo and severe pain, some may have severe Endo and minimal pain/symptoms, may have no idea it’s there!
I was admitted three times with ?appendicitis, pain remained the same but never got worse. I still have my appendix. I’ve been treated for ? Kidney infection or kidney stones. I’ve had CT scans, ultrasound scans, gastroscopy, cystoscopy, colonoscopy…all pretty much normal. Then I had chronic abdo pain after another admission, so severe I couldn’t work, painkillers barely touched it, again nothing showing on my scans. I pushed for a gynae referral and I had a laparoscopy. They found a tiny bit of Endo. They weren’t even sure it would cure my pain treating it but it did! My periods were better for a while afterwards but are gradually getting worse again….gearing up to ask to be referred again.

@namechange600 for a while I was getting a burning pain when I pee and it was where I imagine my ureters to be it was as though the urine was burning it as it was passing through if that makes sense? Thankfully that’s fine now it was below my kidney but above pelvic area that I was feeling it and it could be left it right.

@ThePontiacBandit it sounds like you have had a tough time.. it’s good things are showing normal for you but it doesn’t solve the problem does it? When I had my ultrasound I was convinced I would have been told something and he was even scanning bang on where I’m sore. I was shocked when he said all ok but obviously glad that there wasn’t anything worriesone either. I feel kind of like a fraud as I’m not really that sore anymore but I think my GP is listening although he has admitted if it is endo it’s not something he is an expert on

Yeah, it was so frustrating when everything looked normal. I started to wonder if the pain was in my head! Endo doesn’t tend to show up on scans aside from some MRIs.
I was so relieved when I got a diagnosis. I was lucky to have an understanding GP who agreed to refer me. This was a few years ago. I am currently okay aside from the first couple of days of AF. I anticipate at some point I’ll get the pain again and get admitted - as my consultant said, one of these times it could be my appendix! But at least I’ll be able to say I have the Endo diagnosis and won’t be left without answers for months again.
I hope you get answers soon.

Fingers crossed your appendix will be ok 👌

Definitely. I have deep infiltrating endometriosis (+ adenomyosis and fibroids) diagnosed by MRI. I have some pain at times but it’s fine and rarely so bad I even need painkillers. I originally went to the GP as my periods were so heavy I had anaemia. The first gynae I saw almost wrote it off as perimenopause as I didn’t have pain. Thankfully she knew I had a cyst on my ovary (spotted on a transvaginal ultrasound) so ordered another scan to double check, then once in the system I had an mri and am now waiting for a hysterectomy. I too had the sludge brown spotting but no bleeding after sex. Did you get a full read out from your ultrasound?

Oh wow well you sound a bit like me pain wise. The GP called me back regarding ultrasound but the only thing was a bit of fluid that they would normally think was a sign of early pregnancy but it wasn’t in the end and the sonographer said sometimes you get a bit of fluid there but it’s nothing to worry about. Will just need to see what gynaecologist says I don’t know how long it takes to see them it was the bleeding after sex that prompted the GP to refer me, I don’t have any pain during or after sex or any lower back pain but I feel like it’s a cyclical thing I’ll just have to wait everything seems to be taking a lot longer now with covid.

I've been diagnosed with endo
I get that horrible sludgy discharge too
I also get pain in my hip pretty much every month before my period, if I'm walking downstairs I get this sharp twinge and feels like my leg will give way.
I've had scans on my hip and all is healthly so assume that's the endo too

The more I read up on it the more I find it seems to affect people in different ways it’s weird! There has been no rhyme or reason to my pains but when I look at all the other symptoms it starts to build a picture the only other thing I wondered was are my hormones to pot but I guess the specialist will decide. Also I shoukd have aid in 36 and trying for a baby so that doesn’t help matters either 😂

@Tomicca

Oh wow well you sound a bit like me pain wise. The GP called me back regarding ultrasound but the only thing was a bit of fluid that they would normally think was a sign of early pregnancy but it wasn’t in the end and the sonographer said sometimes you get a bit of fluid there but it’s nothing to worry about. Will just need to see what gynaecologist says I don’t know how long it takes to see them it was the bleeding after sex that prompted the GP to refer me, I don’t have any pain during or after sex or any lower back pain but I feel like it’s a cyclical thing I’ll just have to wait everything seems to be taking a lot longer now with covid.

If you’ve been referred to a gynaecologist, they may do their own investigations. My gynae appointment took 2 months to come through and that was after the first lockdown. I found that my GP - whilst helpful - was pretty clueless on endo so fingers crossed you get to see the gynae soon.