Can endometriosis be missed during a lapa... - Endometriosis UK

Endometriosis UK

55,663 members44,655 posts

Can endometriosis be missed during a laparoscopy

Farrow profile image
Farrow

Hi

For about a year I have had pain urinating during my period. The pain is specifically on my lower left side and is quite severe and sharp during and after urinating, I literally cannot stand up straight afterwards. The pain comes with my period, lasts approximately 2 weeks after my period has finished and then returns with my period and the whole dreaded cycle starts again!

I had a laparoscopy in Jan this year but apparently no endometriosis was found. I have since had urine tests for infections, all were negative. I have had an ultrasound, and MRI scan and a cystoscopy to look in my bladder - but all results were normal.

I just dont know what to do. The pain I experience during my period is excruciating and I have been back to my GP. She just said that if a urologist cannot help me then I will 'just have to live with it'. The pain is affecting my life, I just cannot forget about it.

I have heard that endo can be missed, does anyone know whether this is actually true and has anyone experienced such painful urination during their period?

Thank you.

14 Replies

Hiya Farrow,

I personally cannot say for definite that endo was missed during my two laps but I know that none has been seen. I too have difficulty coping with the pain, and my symptoms fit in with endo so closely I can't imagine it's anything else! I had my second lap last friday, they told me that no endo was visible (so as yet I have not been diagnosed) but they also told me about a condition called adenomyosis (which they say they "suspect it might be"). it's very similar to endo and the symptoms seem to tally up quite closely. Annoyingly its inside the muscle of the womb so not easily spotted!!!

I've also been told to live with it. So heartbreaking! I've had this pain for half my life, and its devastating to think I might have to go through that timespan in pain again :(

I guess what I'm trying to say is, i don't have a definitive answer to your question (though I have in the past seen people comment that they've had a diagnosis second or third time round as a different opinion.) but I share in your pain and frustration. I don't get pain on urination, but sometimes a shooting pain up through or past my bladder, quite crippling. Floors me everytime. You are not alone!

I really hope they can get to the bottom of whats causing your pain, and find you a comfortable treatment plan.

Take care Xx

Hi Little-m

Thank you so much for responding. This has actually encouraged me to keep trying, I had been feeling quite sorry for myself recently but the fact is this isnt normal and we shouldnt have to live a life of pain!

Wishing you all the best with your fight too! Xx

Hi, I have had 4 laps now, the first 2 found no endo, the third did find endo and the fourth didn't, talk about confusing! So in my experience, yes it can be missed, hope this helps x

Yes! Can be missed! See an experienced endo specialist and they wont miss it! See an unexperienced general gynae and they will!

Hi there

I am in the same situation as you, I had a lap a week ago for suspected endometriosis I was sure that this was the cause of all my problems and painful symptoms. Results were negative and I was told all was healthy, however I am still in pain and I am finding it very depressing that there doesn't seem to be any more that my GP is willing to do apart form give me pain killers. Its very difficult to accept that there is nothing wrong when the symptoms are so evident and debilitating. I hope that you manage to find some help I would really like to keep in touch as I am finding it hard to know what to do next.

Amanda

I have had two laps, neither to diagnose endo, both to remove ovarian cysts. The first one last year found nothing, my second one a month ago found quite a bit of endo. So it can be missed, it depends on where the endo is and where they look for it, I think.

The consultant i have seen hasn't been too helpful either and has just told me to take the pill back to back so that i only have 4 periods a year- surely this isnt helping to solve the problem! Nevertheless, although i am sorry to hear that you are suffering too i am glad im not the only one- it gives me hope that this isnt all in my head....

Yes Endometriosis can certainly be missed during a laparoscopy surgery - speaking from personal experience it took 6 years to be diagnosed as they had ruled out Endometriosis. My Endo is very cleary visable now but if you look at my first surgery photos you cannot see anything bad, only suspucious subtle things. I've heard it is rare for this to acur but I wouldnt be surprised if there are many out there who have been told they dont have Endo when they do. Considering how common Endo is and how little Drs know, it seriously concerns me. Endo in its early development stages can appear like tiny clear or white blisters. Pathology can confirm it but as its hard to see its a hit and miss situation and you cannot remove what you cannot see.

MikanRIN profile image
MikanRIN in reply to endo22

I just created my account just to ask you this question. I really didn't want to create a whole account for it but I just had to since I can't find answers anywhere. You see when I have my period it feels like I'm dying. It feels like being stabbed by a knife or having someone drag around my insides as if my uterus was made out of dough. I also faint and sometimes puke when I'm on my period and it's impossible to get out of bed. Not every period used to be like this. But the recent years every period have been like this. And soon it hurt even when I was not on my period. Now I can hardly walk without feelings sore and I can no longer have a job because it hurts everyday. I did a laparoscopy about a half year ago. They told me that everything looked good. But when I read my journal they had written that they had found these tiny white blisters that you were talking about. I'm so worried that it could be early endo that they have missed. I'm still quite young (I'm 24). What if I had a laparoscopy too early in my life? I was sent to a physiotherapist and did some physiotherapy for 2 monts (cuz they said that my pelvic muscles were tense and that was surely the reason) 2 months later my physiotherapist told me that I won't get better. So she said I was gonna have to talk with my surgeon again. Now I've been waiting for my surgeon for about 3 months. Everyday my pelvis, uterus and lower stomach hurts. I'm so afraid that my surgeon will tell me to go home and take more painkillers. Cuz I asked her if it was normal to be in such pain that you can't even leave the bed. She said yes. I just want to know what's wrong with me. I don't know what to do any more. I was so sure that it was endo because of my symptoms. But now I don't know what it is and I feel so alone and scared with my pain.

I'm abit worried at the moment as I have my second lap on the 15th of December just gone. Endo was fount again on my left ovary. . But I am still having familiar aches and pains but now on my right side! I'm. Wondering if they have missed mine :( x

Hello,

I have recently had a lap too for the search of endometriosis and it was said that I had no endo. However the pain is just horrible and I will be going back onto the combined pill (microgynon) to try and treat it :(

I had a lap two years ago ... nothing showed ... last week had another was under for 3 hours because I was covered in scar tissue and endometriosis patches my right ovary was so damaged it had become detached and was somewhere else so yes !

I had a laparoscopy and hysteroscopy on Friday and my doctor said she couldn't find any endometriosis. She said it's good news but I felt down as I was convinced it was with all the symptoms. But I'm glad I found this forum. What are the next steps and should I get another lap done?

I have had my first laparoscopy today only to be told I have no endometriosis, is heartbroken the right word?! I don’t want to live with this pain but with no follow up appointments I don’t know what to do. The gynae said there are some lesions on my bowel but the surgery I had today wasn’t right to investigate that? Is this endo? Where do I go from here? So sorry to hear you are going through a similar thing it’s soul destroying xxx

You may also like...