Yesterday was my diagnostic laparoscopy after 10 years in pain and bleeding, being admitted to hospital multiple times for it and spending a year treating me for endometriosis as I waited for the lap.
I wake up yesterday and my surgeon says “no endometriosis found, you probably have IBS” and it felt like such a cop out. She’s a general gynaecologist and was seeing multiple people that day, I was only under for 40 minutes for her to make that diagnosis and I don’t know what to do next.
I knew this was a possibility, but I am riddled with every single symptom and all my doctors thought they’d find it on there.
Do I try and get another referral through NHS or bite the bullet and try for private? Or do I just admit defeat that maybe it is all in my head after all?
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honeyhills
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Hya , sorry to hear of your situation . I think this has happened to a few women to then have an endometriosis specialist find something. So can you ask to be referred to a specialist or like you said go private . Have you ever had Mri ? I’m in the middle of being diagnosed and two ultra sounds showed nothing but MRI picked a few things up , I then had my follow up appointment with a regular gynaecologist he puts me on the list for laparoscopy and he’s transferred to a endometriosis specialist now . But he talked about ibs as I probably to have that on top , I cut out gluten and dairy which has eased the bloating a bit x
Thanks for your reply!I’ve been diagnosed with IBS since I was 15 and have managed those symptoms since then, including no dairy or gluten!
I did ask my doctor before having a laparoscopy whether I could have an MRI first but she said there was no point as they might not see anything but would see something during laparoscopy 🙄.
It’s just so frustrating that I don’t know what I’m meant to do or which doctors I can really trust you know! X
40 mins is a longtime to be under for a diagnostic lap! I was under for 5 mins and closed, diagnosed with stage 4!
I think people assume that Endometriosis is hard to spot? In severe disease it can’t be mistaken! Organs are displaced, adhesions are bad, and nodules are seen! Nodules as in growths!
The thing about the bleeding all the time got me wondering if you’ve had a hysterscopy? A hormonal panel? I’d be looking down those routes to be fair! My periods got lighter as my disease advanced, not heavier! Endometriosis wouldn’t cause you to bleed all the time! Endometriosis, however, causes you to bleed internally, at every period, which causes inflammation and damage to organs!
If you find that your period is the problem, then suppressing them can be easily achieved, to treat the symptoms you have!
You could pay for a private MRI, but I personally wouldn’t go lap as the cost is way too high! I doubt gp will refer you on atm as the NHS is playing catch-up! I have to go MSK instead of Neurology for already diagnosed cysts in my spine, because Neurology waiting list is years long!
Even if you do get a referral, even today, it will take you years to be given an appointment, so may as well start suppressing your symptoms now, just incase you do have very minor Endometriosis that was missed!… At least it’ll stop it progressing to my stage, if that is the case! Xx
That’s why I suggested looking into other causes! You shouldn’t be bleeding irregularly and Endometriosis wouldn’t cause that! It may cause prolonged periods, for example, mine extended over 10 days, because they was light, but would never cause you to have more than one period in a month! The fact that you have prolonged heavy and irregular bleeding is suggestive more of a hormonal issue, or an issue with your womb! Ablation can be done to stop bleeding, but you won’t be able to have kids!
Endometriosis is a completely different disease process! It womb like cells growing on the inside, that bleed when you do have a period. That then goes on to cause irritation to the inside of the pelvis! Our hormones are fine, in that we have cyclic normality!
Have you checked for infections? Had a smear? Those would be what I would be looking at!
And a standard diagnostic lap is anywhere between 30 mins and 1 hour! A standard lap with treatment will extend past an hour!.. Xx
Perhaps I worded my original post badly, but I’m not constantly bleeding, I have heavy yet regular periods. When I’ve taken hormonal medications, that increases my frequency of bleeding, something I’ve been told by multiple doctors often happens if you have endometriosis.I have almost daily pain mostly during ovulation, bowel movements, urination but my pain is always it’s worst during my period.
I’ve ended up in A&E 7 times due to the extent of my menstrual pain and bleeding and get admitted each time.
I’ve had countless smears and checks for infection, I have never had anything other than a UTI.
I’m sorry you’ve been having a rough time of it. I’d second what a couple of commenters have stated here about seeking a second opinion.
Your symptoms correlate to many of my experiences. I have had four surgeries for my endometriosis (and adenomyosis) - the most recent endometriosis excision and hysterectomy.
I had extremely heavy (and regular) bleeding - flooding and clots leading to anaemia. Heavy bleeding can also be a result of fibroids or adenomyosis. I was diagnosed with adenomyosis in 2019 whilst I was initially diagnosed with endo in 2004. My adenomyosis was diffuse and spotted on MRI. Often MRI can pick up endo in different locations. My initial endo was found in the pouch of Douglas but never appeared on ultrasound (I didn’t have an MRI at this time).
I also didn’t respond well to hormonal contraception - neither emotionally or physically. I bled for six months straight with the coil before I had it removed.
I also was put on transexamic acid for the heavy bleeding. Tried different birth control pills etc.
I too had pain during ovulation, in the lead up to my period, during and for a few days after. Pain with intercourse. Painful bladder during periods and bowel issues around my periods. So similar to you, quite cyclic.
From what you are describing I would definitely seek a second opinion. My own first laparoscopic surgery was exploratory and then excised what was found at the same time. Surgery took about an hour and half. Five minutes seems barely enough time to glance around, let alone investigate harder to find deposits (later surgeries of mine also found adhesions and endometriosis deposits on my bowel - endo doesn’t always nicely sit in easy to find spots).
Basically, trust yourself. You know your body best. Keep a symptoms diary and ask to see specialist gynae surgeons. You could have endo or adenomyosis (or both for the win!)
Incidentally endo is also linked with auto immune diseases and other inflammatory conditions (including inflammatory bowel disease). I also have Hashimoto’s thyroiditis which was found in recent years. Sometimes the inflammation and symptoms of endo like to interplay with other conditions. Anti-inflammatory diet can be useful to help manage symptom severity.
Sorry for the long post. I feel for you. Trust yourself and be your own best advocate. Don’t accept being fobbed off when you are in pain.
I am so sorry you have experienced this. I have just paid to go private for my lap and like you they didn't find anything "pelvis is clean as a whistle". To which i became hysterical - crying that I must be mad and making up my pain! My private gynae was lovely and reassured me that he completely believed me!
The severity of the disease does not always correlate with the pain - i have had lots of ladies on here tell me they were diagnosed with 2 "tiny patches" of endo yet were completely debilitated by the pain.
Like you all my symptoms fit - during flare ups - I cant function or walk. Pain during sex, painful periods (time of work painful), fatigue, constant pelvic pain with flare ups and sever bloating.
My plan is:
Ask GP to do extensive blood work - including checking for autoimmune disease, also stool sample to check its not chrons (I don't have many bowel symptoms but it could be an atypical presentation)
Ask for a second opinion from an endo specialist.
I have my follow up with my consultant on the 14 April - he wants me to start the pill - however we are trying for kids (although fairly difficult when sex is painful) - he also remains convinced its endo - just either somewhere he cant see or too small to visualize!
Not sure if thats helpful - but please dont feel alone xxxxx
Thanks for your reply, so reassuring to know I’m not the only one going through this.
It’s so frustrating as I’ve tried every pill I’m able to (due to having migraines) and the coil, implant, injection and I still have bleeding and pain.
I’ve done blood work, stool samples etc and this laparoscopy was the last resort really!
Hopefully once I’m able to take the report to my doctor, they can help me make sense of it all
I’m sorry to hear that. I had a similar experience after my lap in December. Was absolutely devastated not to have any answer and to just be discharged from gynaecology with no follow up, despite still having significant gynae symptoms. Just because the consultant doesn’t think it’s endo, doesn’t seem enough to me to warrant no further gynaecological care or tests when symptoms are clearly gynaecology related. But anyway, I spent some time researching whether endo is ever missed in a laparoscopy. Turns out it’s missed a hell of a lot in laps done by general gynaecologists, rather than endometriosis specialists. I read that often in a diagnostic lap, only the womb/ovaries etc will be checked and often described as ‘pristine’. However, endo tends to start in other areas, before it then reaches these, so it’s extremely important to thoroughly check everything within the peritoneal cavity. This cannot be done through only one or two incisions and also cannot be done without tilting the operating table so the feet are higher than the head, causing the liver to fall out of the way and allowing visualisation of organs behind it. (Read this through Nancy’s nook). There are SO many stories on here and other online forums of endo being missed from the first lap, or sometimes several, because it presents in a large number of different ways and can be hidden in so many places. The above info that it will be immediately visible if it’s worth doing anything about is not entirely accurate and is a little dismissive of your situation, IMO. It’s well known that the amount of and severity of disease does not at all correlate with the symptoms or pain level you’re in.
I went back to my GP, and spoke to him about what I’d read, that endo was renowned for being difficult to diagnose. I made sure that I spoke highly of my consultant gynaecologist, she was lovely and extremely validating of my pain and I told him how much appreciated that, but that I was aware that endo is tricky to diagnose and it’s not uncommon for it to be missed. I restated all of my symptoms and emphasised how cyclical they are and that I am convinced of the gynae link, that I had tracked and recorded them and that I know my own body. Told him we were considering a private consult but would never be able to afford the surgery, and he was WONDERFUL. Offered to refer me to a different trust for a second opinion, which I didn’t even know was an option. But he also did a massive panel of bloods, stool samples, ecgs and chest x rays and a colonoscopy first. I felt so validated and it really gave me hope again that I might hoot have to live like this forever. Now the tests are all complete, my referral has just gone through and I’m expecting another long wait, but feel so differently about it now. I’m sorry that’s SO long, but hope it is somehow helpful or encouraging!
I’m so sorry I’ve only just seen this! Thank you so much for your reply, that genuinely has made me feel so much more reassured.
I unfortunately did only have a general gynae as it all happened quite quickly. I’ve done research myself ever since the word endometriosis was even mentioned to me and found similar to you, that it’s very often missed - and it was my absolute worst fear that it’d happen to me!
I’ve ended up with a bladder infection post-op so currently my GP wants me to concentrate on getting better before discussing more tests etc.
When I did speak to my GP, she said the report from the surgery only says “pelvic pain” and doesn’t even detail what was carried out during the procedure, she was as confused as I am.
I’ve not been able to get hold of the consultant even once since having the surgery over a week ago now! Im infuriated by the entire situation and it’s exhausting enough trying to recover from the bloody thing!
I hope your wait isn’t too long and you get the care you deserve x
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No endo found?
Laparoscopy found no Endo?
Adhesions found but no active endo? 
Adhesions with no endo?
No endo found :(
