Hi everyone, had a laproscopy yesterday after being told possibility of endometriosis, nothing was found and I'm feeling really down and disheartened. I saw a private consultant last year who was positive that's what it was and I was put on the NHS list. When I saw the NHS Dr, who is much younger than the consultant I saw, and the private consultant is a renowned gynae dr round here (who also works for the nhs) she was very different to the private one, seemed to not care and disagreed with everything her boss in effect had said!!
So yesterday when she came to see me pre laproscopy, she didn't seem to think she would find anything and told me my symptoms weren't "typical of endo" even though according to every website I have every single one!! She passed off my symptoms as bowel as I suffer with constipation, this was even before she looked!!
So nothing was found, but she only made the 2 incisions, one near my bellybutton and the other to the left, nothing on the right. Is this typical? Could there be endometriosis to the right or lower? Would love to hear people's experiences as I'm very depressed and when I mentioned these threads to my bf about lots of others in the same boat, I just got the eye roll 🙄 and disbelief and I'm scared to say that to anyone else now incase they just think I'm neurotic!
Also just to mention I have pcos and previously diagnosed with interstitial cystitis, had a cystoscopy for this around 10 years ago.
Any help greatly appreciated, TIAxxx
Written by
Alfie81
To view profiles and participate in discussions please or .
I have pain when having sex, bleeding after, rectal bleeding when on my period, pelvic and back pain, pain down my left leg, severe fatigue, headaches, constipation to name a fex x
Its only gold standard if the surgeon looks properly and knows what to look for. A woman I know had 4 laproscopy operations to have a look for endometriosis via general gynaecology. Once she was transferred to a endometriosis specialist at the local bsge centre he found extensive endometriosis. The previous 4 consultants didn't do their job properly.
This is what I have read before and it's so disheartening as people just think it's in your head, you don't know what to do for the best, keep pushing or try and live with it 😔 but thanks for your reply, it helps to know that other people know how it feels x
There are different types of endometrial tissue and they are not always easy for the surgeon to identify as actual endo tissue - especially if the surgeons are used to treating only the more conventional presentations of endo. These various different types of endo tissue can also - often - be hidden in very, very awkward sites ... and all out of the way in the dark, crowded, messy innards of the abdominal cavity: hidden around corners, or behind organs, or attached to the bowel, etc. etc. there's no real space in there - it's all very close-packed. Also, very, very often, the endo that is causing most of - or all of - the pain, can be in the most difficult to access and examine areas. Further, some of gynaes doing initial 'run-of-the- mill' laparoscopies, may not be endo specialists, and may just be general 'lady bits' surgeons. Further, women can (and frequently do) have laps where the surgeons don't even look in these hard-to-access areas.
I would read Hilary Mantel's account of her experience of years of suffering the most horrendous and debilitating endometriosis. When she was, finally, properly diagnosed and treated - after years of being fobbed off - the mess that was found, with her insides all glued together, was beyond belief.
Hi Alfie81. I am so sorry you have to go through this. It feels awful when people think its all in the head. So rest assure its not and I believe that. However if they didnt find any endo during laparoscopy then their is a high likelihood that you dont have it. Which though would be frustrating as you still dont have a diagnosis of what you are going through, I would still be relieved coz endo doesn't have any cure and once you have it, you have it for life :(Your symptoms maybe related to pcos as I understand they are similar. In my research, I see lifestyle changes help these symptoms. Try eating healthy, all natural foods if you are not already doing that, cut out sugar, dairy and other inflammatory foods and exercise regularly. You should feel better in 1 to 2 months
Thanks for your reply, I suffer from fibromyalgia aswell so it's difficult to ever feel well. It's just the bleeding after sex, rectal bleeding, pain during sex and pelvic pain that we all thought pointed to endo.
I read a post last night where someone said that they had a lap surgery for endo a few years ago and it seems to have come back with all the symptoms and when she had another lap recently, they didnt find anything! And there were comments that if lap is not by an endo specialist, they can miss endo. So I was just thinking that could be your case too if the gynae was not an endo specialist
Just read some other comments on your post. I apologise for my naive comment as I could never imagine someone who is not a specialist would be even allowed to do a lap for endo 🙄 As everyone has rightly said, keep pushing and dont give up! I really hope that you find the right doc who would listen to you! All the best x
Hi, it's really annoying now naive people are, they don't understand that human error exists, it's perfectly possible the consultant hasn't looked properly. Not every operation is successful sadly.
I hope your BF is supportive in general as that reaction isn't acceptable.
I would ask for the consultant to phone you, if not pay for a private appt with her, so you can tell her everything her member of staff said. It's important she knows how you've been treated and it's possible that the other doctor hasn't looked properly. Have they ever sent you to a colorectal surgeon?
Did she say where she looked? This is important based on your array of symptoms. She should have checked your bowel and rectal areas.
I had 4 incisions at my last operation, I had bowel endometriosis (fixed colon), fused left ovary and endo in my pouch of douglas. They did one incision on the lower right, one on the lower left, one inside the belly button and one on the left next to my belly button.
My bf is supportive in general as I have fibromyaia aswell, which I've had for 19 years, been with him for 8, but on a day to day basis my condition can change and vary so much I always feel like there's something wrong!! He has lots of trust in doctors so I think he thinks if they found nothing, they know best.
The Dr made an incision in my belly button and to the left, nothing on the right at all. I thought this was strange not to look. The left on doesn't hurt at all, feels like nothing even happened there!!
I don't even remember talking to her when I came round, just the hca told me all clear x
Tell him there's an average of 8 years delay in diagnosis of endometriosis. Clearly based on that doctors don't always know best! All jokes aside there's useful info on issues with diagnosis of endo on Endo UK Facebook page, all the stories of delayed diagnosis. Worth sending them to him to read. Xx
Gosh, so sorry to hear this. You poor thing 😢 My first reaction too was that this surgeon could have been looking in the wrong place. I did wonder about endo on the bowel etc. as others have said before. Laparoscopy is considered major surgery (according to my surgeon!) and this doctor’s dismissive attitude is really unhelpful. I agree - going back to your original consultant and telling them your story might be the only way to solve this (and get some closure on this episode too!) Sending you huge hugs. You will solve this. Might need to get referral to a v specialist hospital. xxx
Aww thankyou for your very kind words, like I said it's a shame they have to come from people you don't know, but you and others have made me feel better like I'm not neurotic, I've suffered alit over the past 19 years with various things and I try my best to get on with life as best as I can, maybe too much sometimes, you can't win!! But sincerely thankyou for helping me xx 😘
You are so welcome. It’s not unusual to go around the houses sadly before you find the right doctor who can help. Really hope they figure it out for you soon. xxx
I'm so sorry things haven't been straight forward for you. I had a lap 7 years ago and was told I didn't have Endometriosis before 3 years later being diagnosed with stage 3 endo. I suppose the possibility is either you don't have endo and your symptoms are caused by something else. Have you looked into adenomyosis? Symptoms very similar to endo. Or you do have endo and it's been missed by the surgeon. 2 incisions are standard if they don't feel they need to remove and disease. I would say depending on your circumstances either go back to the private consultant and see what they suggest? Or ask your gp to refer you to a different gynecologist on the NHS preferably one out of a endo specialist centre.
Have you thought about Fibroids? The symptoms you have mentioned are similar to mine. I have a 15cm fibroid in my groin and it causes terrible sciatica and affects my bowel. They told me I have endometriosis also further up. I’m due for a full hysterectomy in next couple of weeks 😩. Hope this helps x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Endometriosis in the bladder. Advice needed!!!
Diaphragmatic endometriosis, has anyone been diagnosed with this? Need advice please 
Negative lap, need advice please? 
Endometriosis advice please 
laproscopy found nothing after MRI showed endo 
