No endo found during Lap - What Next???

[Annan1267]

Hi Everyone,

So I had my first laparoscopy yesterday to diagnose endometriosis and I was told by my surgeon that they found nothing. No cysts, no fibroids, no endometriosis. I broke down in tears.

I have had severe debilitating period pains, pelvic pain, pain during sex, irregular bleeding, painful bowel movements and urination for the past 5 years since the age of 12. I am now 17, unable to even go to school because of the amount of pain I am in.

I thought that the laparoscopy would diagnose me and finally help me figure out what was wrong, but it has left me feeling frustrated, angry, upset and worried. I feel as if nobody believes my pain is real and that I’m fighting a losing battle.

I have had chocolate cysts in the past, which as far as I know, you cannot have without endometriosis. I have had transvaginal scans, ultrasounds, mri scans, which all showed no endometriosis.

Can anybody on here help me out? Have you ever been told after a laparoscopy that there was no endo but after another been told there was? Does anybody have any advice as to what I can do next?

Just a note that the surgeon who performed my lap was a general gynae and not a endometriosis specialist.

[kate24601]

I'm in exactly the same boat as you. It's easy for people to say 'go back and have another lap with a specialist' but in reality it's hard and exhausting to keep pushing when doctors don't believe you any more. Are you on the pill or anything? I was on it for 4 years before I had my lap and I firmly believe that thats the reason none was found, as it seems stupid to treat it for 4 years and then be surprised none was found but there you go. I've also heard about people asking for an MRI for adenomyosis, which might be a next step when you're feeling up to going back to the doctors, as something may show up this time if you come off medication? x

[Annan1267 in reply to kate24601]

Thanks for replying,

I’ve been on the pill for just over 2 years now; it has never made any change to my pain or periods, has it affected you? I’ve been considering coming off it but I would be scared that my doctors would see this as me ‘refusing treatment’ and not take me as seriously anymore x

[kate24601 in reply to Annan1267]

I thought the pill made a big difference but really my periods were still pretty heavy and my hair was falling out, I always had a cold and a headache and my gums kept getting infected. I feel so much better off it, the only downside is my periods are literally crippling (they were awful on the pill but off it they're literally unbearable).

I came off it against doctor's advice and states all this as my reasons, going back on Tuesday to see what they can do for me but I'm pretty sure they'd just want to put me back on something. At the end of the day it's your body, you know if something isn't right and while it's tiring to keep protesting to doctor's, they can't put you on anything you don't want to be on x

[Annan1267 in reply to kate24601]

Thank you so much. I think I’m gonnna go back to my GP and get referred for a colonoscopy just to rule anything like that out, then go to an endometriosis specialist and see what they think, if it would be worth another lap after coming off the pill and everything x

[kate24601 in reply to Annan1267]

They will most likely do blood and stool samples before a colonoscopy. I was told I had IBS and that if my stool and blood samples came back abnormal then I'd have a colonoscopy, but they were both fine so they refused to do any more testing. Also they're super reluctant to do laps on people our age, have you noticed haha? I'm 21 and had to fight for my lap, now they won't give me another one bc I want kids soon so they see the issue resolving itself and won't give me another one before hand which kinda sucks x

[Sarahlouisex]

I had a lap just over 2 years ago by a general gynae and nothing was found so completely understand how you feel. I was instantly discharged and had not one follow up after.

With my problems getting worse and going back and forth to the doctors and keeping on being dismissed I found a specialist and asked my gp to refer me to see him privately.

He done an exam and felt posterior nodules and I’m now waiting for an mri and lap through his nhs clinic. He said he would be very surprised if I don’t have endo.

I know it’s so hard to keep on fighting and so many times I have felt like giving up but you know when there’s something wrong with your body.

Keep fighting. Here if you want to chat xx

[Annan1267 in reply to Sarahlouisex]

Thank you so much for your kind reply, I hope you get to the bottom of your problems soon xx

[dawntildusk]

i really feel for you. if you read my story i was in the same position as you. the short answer is yes you could still have endo aa general gynae unfortunately can often miss it. do u have a follow up scheduled? I would push for a bsge referral if poss. if they havent removed anything then your symptoms are likely to persist so further investigation is necessary. take your time to recover and research what u can. dont let them fob you off! only you know your own body x

i had first failed lap with general gynae. went on to have another with bsge (diagnosed severe stage 4 endo and adenomyosis). third op had a hysterectomy

[Annan1267 in reply to dawntildusk]

The surgeon said I could have a follow up ‘if I wanted to’, I think he realised how upset and let down I felt.

What is a BGSE referral? I don’t think we have that in Ireland! X

[dawntildusk]

def ask for a follow up. endometriosis specialists work at bsge centres. only these surgeons should operate on severe endo. if you have a look at the list and see if there is one near you.

[dawntildusk]

just had a quick look and you are right there doesnt appear to be any in ireland :-(.

[Annan1267 in reply to dawntildusk]

There’s 3 endometriosis specialists in Ireland that I know of that are trained in a special way, I think it would be worth seeing one of them!

[Annan1267]

Oh okay, I’m definitely planning on seeing an endo specialist, to get a second opinion and see what he thinks. I just can’t accept That all of my pain is caused by nothing!

My heart breaks for you to find out you have stage 4 but I can imagine the relief you felt when you were finally diagnosed with something!

[dawntildusk in reply to Annan1267]

i was initially told stage 4 and had op to remove large endometrioma from my ovary. was told i may lose that too. i was so confused when i woke up and was told there was nothing there. i just cried and cried. my emotions were all over the place. i researched and found this forum and discovered bsge centres and specialists. thats when i persued getting referred to my local one. when i had my second lap i was so overwhelmed when they said i did have it. i know its not a good diagnosis but it strangely felt good just to have that confirmation it wasnt all in my head. it really has been a rollercoaster.

[Annan1267 in reply to dawntildusk]

I was exactly the same! They were going in to remove endo and I wake up to be told there’s nothing wrong! It’s a horrible feeling to be told that soemthing you’re suffering with is in your head.

I completely agree with you saying it’s better to have a bad diagnosis than no diagnosis at all x

[dawntildusk in reply to Annan1267]

concentrate on getting yourself better for now as its still major surgery x

[dawntildusk]

you could ring the endometriosis uk helpline next week and they might be able to point u in the right direction

[Jess_85]

I was in the same boat as you a few years ago and got into a huge depression as my gynae said it was all in my head. He then referred me to another clinic and i felt like a complete wreck. I went back to my gp and said ill go it alone for a bit as I felt that every gynae had seen me. Then after a couple of yrs and a lot of nagging from my husband i went back to my gp who referred mart back to the same dept met a new gynae who did a lap and they found extensive endo. He also showed me the notes from my previous gynae (now retired) which basically said he did not believe my level of pain. Im now waiting for a further follow up appt to manage my condition and he said that it is possible that if you have someone not looking in the right areas or not listening to their patients things can be missed. I would strongly advise get a 2nd opionion. You know your body and pain so make them understand!!!! Good luck hope it all works out x

[Annan1267 in reply to Jess_85]

Thank you for replying, I hope everything works out for you too! I find it awful that it seems the male doctors don’t take our pain half as seriously! X

[Jess_85 in reply to Annan1267]

I know! Endo is slowly being recognised just don't give up as its hard enough living with it let alone not having support from drs, work etc. Just remember the bad days when speaking to the drs I found a endo diary app which is great I fill it in every day and send the results to my gp every 2 months so they keep track. Since I have gone back to this consultant i have felt so much more confident knowing i have someone in my corner (apart from my husband of course!) I really hope it works out and that you get some answers soon. xx

[AJJ123]

I know that there is a blood test which costs the nhs £8.00.

It’s used to detect cervical cancer but it also detects endometriosis.

If I had known about all this I would have requested it years ago.

Good luck xx

[AJJ123 in reply to AJJ123]

CA-125 I think it’s called xx

[Annan1267 in reply to AJJ123]

I’ll look into it, thank you x

[RicEndoUK in reply to Annan1267]

Hello there,

I'm sorry you didn't get any answers from your surgery.

Just to note that in the NICE guidelines for diagnosing and assessing endometriosis, doctors are advised the below:

"Do not use serum CA125 to diagnose endometriosis.

- If a coincidentally reported serum CA125 level is available, be aware that:

a raised serum CA125 (that is, 35 IU/ml or more) may be consistent with having endometriosis

- endometriosis may be present despite a normal serum CA125 (less than 35 IU/ml).".

For more on the NICE guidelines, please see this link:

pathways.nice.org.uk/pathwa...

RicEndoUK

Volunteer Moderator

[Ericaa42]

I had a laparoscopy in June 2017 by a general gynae and was in the same position. Had been looking for a cause for my pain for months and was gutted when they said they'd found nothing. I then went to see an NHS gastroenterologist who basically laughed at my pain and pretty much said he didn't believe it was as bad as I was saying it was. I went to see a private gastroenterologist who did a colonoscopy and small bowel CT scan, and everything was clear.

I'm now nearly 18 months on, my symptoms have got so much worse and I'm waiting to see another gynae on the NHS. Considering going privately to endo specialists if they suggest another lap.

I know how gutting it can be to be told there's nothing wrong. As everyone else has said above, you know your body best and you have every right to keep pushing for answers if that's what you want to do. If there's no bsge in your area, I would try to go to an endo-specialist consultant. No point having another lap with someone who might miss it. That's my plan anyway. Best of luck and I hope you get to the bottom of it x

[Lizzie4040]

Hello, im 21 and i have had the exact same scenario happen, i had a lap which showed no endo and i burst into tears and then was discharged. I havent gone back to my GP yet as i feel like no one believes me, but its good to see other people are in the same boat and im not the only one that its happened to, as i was so gutted after the lap.

[Bobz1987]

I had my 2nd lap in 8 years to be told nothing was wrong. However both operations were done by general gynaes and this most recent one was an absolute joke. I had 1 incision and she said I had areas of bleeding and not to worry about a cyst in my uterus as it's just blood growing through my muscle wall!! My post op was about a 1 minute long and she pretty much dismissed me. I've been suffering for 16 years now so I've requested all of my medical records and I'm going to see a specialist privately x x x

[Sunsetsss]

Have experienced the same, very disheartening, but reassured reading others experiences, even if it takes a little longer, makes me want to keep investigating. Gives me hope for the next steps.