Endometriosis UK
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Lap and no endo found, any success stories 2nd time round?

Evening all,

As the title says on the 7th of March I had a diagnostic lap with general gynae and no endo found. I didn't get to ask any questions as he rushed off at the end and from the photos the nurse showed me they are all of my uterus and ovaries but none of pod etc.

Wondered if there were any ladies out there who were diagnosed 2nd time round. I understand I need to see a specialist now bsge to take this further and I will be getting copies of my photos.

Feel like I need some positive feedback to stop me thinking that my pain isn't real.

Many thanks in advance x

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Hello,

I'm in the exact same position, I had my first diagnostic lap under general gynae in December and nothing was found. I am still in crimpling pain and after experiencing the worst periods ever a few months ago I decided to consult privately with an endo specialist who suspects digestive endo and/or adenomyosis. He referred me back to his NHS clinic and I am seeing him next month to most likely agree on doing a second lap. My GP also told me that it was likely they only checked ovaries and uterus under general gynae! I would try to get a second opinion if you can! Good luck with everything! x

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Really appreciate the reply thank you. I have a gp appointment on Wednesday and yet another ultrasound tomorrow so will go from there. I plan to get my photos too.

Is it possible you could let me know how you get on if you remember xx

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I'll try my best to remember :)

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Hey lovely,

Sorry to hear you didn’t get answers for your pain and symptoms ☹️

My endo is on my pod. My first lap done in June last year by my fertility doctor he found and removed endo from pod. I conceived straight away ( after 6 years of not being able to) but miscarried. Endo symptoms returned straight away- had my second laparoscopy Friday and endo returned to pod , again some left on my rectum and serious symptoms so I’ve been refered a bowel specialist now.

I am really stunned that your gynaecologist didn’t check pod- it’s such a common place for endo to grow.

A lot of medics didn’t believe my endo could possibly grow back so quickly- I was repeatedly told it was things settling down from my early miscarriage- I knew it wasn’t and knew it was back. Luckily my fertility doctor is very supportive and he took my concerns seriously and did all my referrals. My point is trust your instincts- you know your body better. I’m sure your instincts are right- as mine were. It’s rubbish we have to fight so hard but sometimes we do. go back to your GP and get referred to an endo specialist. You need a proper laparoscopy- endo doesn’t just grow on pelvic organs - can grow on other organs such as bowels. So sad so many medics fail to understand endometriosis🙄 I hope more is known to future generations 😊

Good luck rooting for you xoxo

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Thank you so much. I'm certain it's in my pod, might not be much but from the symptoms i was having suggests its there. I shall keep pushing forward.

I'm with general surgery anyway because my gp at the time was hoping someone would see me quicker and at least do an mri. All they want to do is ultrasounds. I've had 5, waste of time and money xx

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It’s a very frustrating system that is for sure.

When endo is in pod can be very mild but present both pain, gynae and bowel symptoms. Endo in pod is known to cause more pain and symptoms there than other places.

Endo does not just grow on pelvic organs - I don’t understand why he didn’t check other places. Seems basic!

You know your body better and back yourself 🙌🏻 Tell the GP he didn’t check other organs- should get referral to a proper specialist who will be more through 😊

I had a terrible experience with our first fertility doctor but with my gynae symptoms I was re refered by a gynaecologist to his colleague ( fertility specialist) who I’ve been under for 18 months and was the one to diagnose my endometriosis. Just because you had a duff specialist doesn’t mean your next one will be xoxo wishing you the best xoxo

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So true and thanks again.

At Christmas time I was rock bottom with pain in my pelvis, nerve pain in my legs, back and hip pain (mainly left side) and unfortunately because only taking a high dose of codeine worked I ended up at the hospital with a fecal impaction. Came on my period and started bleeding from my bottom. Put this down to trying to clear myself out (even tho I hadn't been able to at this point) but now I realise from information and the fact this stopped when my period did do I think it's related to everything else.

Also my issues only became so severe because I stopped taking the combined pill. Have been put back on it and all symptoms have reduced dramatically. Feel like it's staring me in the face yet o can't quite see it xx

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Oh poor you, I know I suffer terrible bowel issues, can emphasis. It’s awful having to be reliant on strong painkillers just your be able to carry on with daily activities.

I also have bleeding from my backside whilst on my period. I think mine is due to my endo beng on my rectum - my gynae has refered me to a colorectal specialist, hopefully they refer you to one too. It definitely needs looking into xoxo

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Hi hunny

In 2013 my pain started out of nowhere (seemed out of nowhere but I had infact come off bc for first time since starting periods) I was told I had ibs I was over weight etc. Later that year was rushed into hospital with severe pain was almost discharged with constipation until I passed out, had surgery and they found a 9cm mucus cyst that was growing quickly.

But the pain didn’t stop??

I had scans which showed simple cyst multiple times that didn’t go away but these were only small so they decided to go in and remove said cyst and have a look. They said it was a normal cyst and to have my bowel looked at. So I had the whole camera up my bottom and they said it looked ok but was spasmodic. I had my gallbladder removed later that year 2015. But still the pain persists I had the coil in- and out because it was horrible. Had implant then out. I went through the whole referral once again. Only this time I pointed out they studied at medical school and as much as they know anatomy every body is different and I know my body better-then anyone. So they reluctantly decided to perform another lap, they were so sure this would be my last one as they were very confident that it would at the very least be adhesions. Waking up from recovery I was told they found adhesions and... endometriosis on my BLADDER AND BOWEL AND POD... they still had the audacity to stand there and tell me it was only mild and not the cause of my pain!!

I was discharged! That was November 2016 . I have not long eventually been referred to Portsmouth! I have appointment on the 27th to discuss mri results from before Christmas. My life is non existent. I’m on morphine. Hang on in there but just because you have a diagnosis it’s not plan sailing x

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Wow you've really been through it and you are 100% correct we know our bodies.

Before I came off the pill I was getting tummyache in between my cycles that's what made me come off it because I thought it was the pill causing it. Then the ache just got worse and worse but all of a sudden 3 months later it was agony, I even went to A&E twice as I thought something was seriously wrong. Every test was clear apart from constant blood in urine which I never had before all this and when I had swabs taken it was horrendous and I actually shed tears as she was doing it.

I know this is not right and thank you because writing it down again has reminded me that I'm not making this up and I need to fight on x

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I never had a lap and was eventually diagnosed with endometriosis. I've even had a hysterectomy at 33 and it took 3 more years of pain and hospital apts for them to finally decide I have it. I had decapeptyl a few times too which is hideous!!! I now just pop painkillers lol they want meto gabe my ovaries removed but i refuse !!

Good luck xxx

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How did they find yours? I read some deep endo shows on mri or laparoscopy. Can it show on anything else? X

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The symptoms for one....i bled like a bitch and was in agony, my hips back belly and ovaries . I lost clots bigger than golf balls too. I've had numerous scans and stuff.

I also have kidney issues ,they bleed all the time so I always have blood in my wee. My function etc is ok so I'm assuming it's the endo. It's not great though cos my son's need kidney transplants and I may not be able to donate 😡😡

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