Log in
Endometriosis UK
41,299 members35,260 posts

What do I do next. Nothing came up in my laparoscopy

I have been bounced from pillar to post.

Urology, gastro and gyno twice for over 2years. I also went private to see a gyno and he said he was sure it was endo, and he could feel it?

I had my first lap Tuesday, but nothing was found and they fitted the coil.

But she said there was still a chance that it could be in my cervics. But that's it, I've been discharged and I'm in limbo again.

Can anyone give me any advice, I feel so lost. I can't deal with this pain anymore 😞and I'm mentally physically exhausted.

19 Replies
oldestnewest

Sorry to hear that you've been bounced around between different consultants and haven't had any answers.

It is possible not to find endo even with a lap, but that doesn't mean it isn't there. Just because they couldn't find endo, doesn't mean you don't have adhesions or scar tissue making things 'stick' together.

I'd suggest you push for further investigation/information regarding what they found in your lap, and also might be worth finding out if you have a local pain management service. They may not be able to tell you exactly what's wrong, but they will be able to help you manage the pain.

It's also worth looking at changing your diet. Again, it won't take the pain away, but it might help. There are several things that can cause inflammation which won't help your pain levels, I'd suggest starting with reducing/removing wheat/gluten, see what that does, then try the same thing with dairy. Alcohol, caffeine, red meat can also exacerbate inflammation, so it's worth looking at those too.

Hope you find some relief xxx

Reply

I’m sorry you’re going through this. I had the same result from my lap; Mirena fitted, nothing found. I pushed for a follow up and was offered gynae physiotherapy referral and an mri.

MRI found possible adenomyosis (although they didn’t use contrast which would have helped show things up).

I still strongly believe I have endometriosis and plan to get a referral to a specialist for a second opinion. You are entitled to a second opinion on the nhs, and can ask for a referral to any nhs expert you want in the uk. I was so devastated after my discharge. But false negatives at laparoscopy are pretty common so I’m just carrying on trying to get to the bottom of it. Good luck getting your own answers xx

Reply

This is the same for me x

Reply

Good luck, I'm so Sorry to hear your going through the same.

I'm so worried about losing my job if I don't get a diagnoises.

Can I ask what kind of symptoms you have and if you have flare ups of pain and what I feel like?

Reply

I mostly only get pain around period and ovulation. My main symptoms are severe general pelvic pain, severe right side pain esp at ovulation, v heavy periods with dark clots. Tugging feeling on right side when peeing. Fatigue.

I’m in bed a lot and unable to work due to other health conditions, otherwise it would definitely have affected work; I’m tied to my electric heat pad several days a month.

Reply

Heya,

Sorry you've not had much luck. I had a laparoscopy by a general gyne 3 years ago, he told me he didn't find endo, just adhesion and scar tissue and said it was probably just a PID. I pushed for a specialist appointment as after a year and a lot of visits to different gynes i was still in a lot of pain. I had my second lap end of last year which confirmed stage 3 endo.

Endo can be missed my general gynes as they don't always know what they are looking for unlike a specialist who looks for it on a daily basis.

Keep pushing for answers, you know your body better then anyone else does.

Good Luck x

Reply

Well done that you managed to keep pushing them and finally got your answers. It's just so difficult.

So you reckon I should go back and ask to be forwarded back to the gyno again?

Can I ask what your symptoms are?

And if you have any rushes of pain and how they feel x

Reply

Was it a specialist appointment you had when you went private?

I get continuous lower back pain, shooting sharp pain in my left and right ovaries but not all the time, I get endo belly quite a bit and fatigue. I’m on the marina coil now which has helped with the pain. X

Reply

I really don't know, although apprently his one of the best gyno's in my county and seemed to know what he was feeling for and went alot deeper than the other gyno I had seen.

What's belly endo?

I'm really sorry to hear. Have you found anything to help?x

Reply

endo belly is just where your tummy swells, mine makes me look a couple of months pregnant, i normally get pain shooting through me when i have it, makes you feel very uncomfortable.

Reply

Hi, I got told by several doctors they were sure I had endometriosis due to the symptoms I was having. I already had adenomyosis. Lap came back with no Enron and I went to a specialist so it’s been all down to adenomyosis.

Have they offered you an MRI?

I had an ultrasound which showed up nothing when something was obviously there.

I was told endometriosis and adenomyosis is basically the same thing/same symptoms.

Go back to your doctor and push for further investigations as you know yourself when something isn’t right. It’s your body and it’s you who has to cope on a daily basis, even take someone in with you for support.

Hope you get the answers you are looking for.

X

Reply

No haven't been offered an MRI

I'll try get the doctors to forward me back to a gyno.

Can I ask what your symptoms of endo is? Xx

Reply

Hi I have adenomyosis and not endometriosis. I get lots of pain, like labour pains and have to be put on morphine for it. Big clots, very heavy periods where I get flooding and it goes through my pad and jeans, bloated, low iron levels, period can last a couple of days or weeks and no pattern to it, hair loss and weight loss.

Hope you get all the answers you are looking for, lots of support on here too 💕x

1 like
Reply

Sounds awful.

I'm really sorry to hear

Reply

Have you tried the coil before? I had 6 months of bleeding, but then it has settled down and made a massive difference to my pain. It has not fixed everything, but I can go a good few months without really bad pain now. Hopefully you will find that it improves things for you.

I'm waiting on biopsy results after my lap, after they found scarring that is "Not typical of endo" so I understand how frustrating it is not to have clear answers.

Reply

No, I've never had the coil before

Any luck from your biopsy?

Reply

The coil does feel like a bit of a fob off, but it can make a difference. I hope it does for you.

I've got another couple of weeks to wait for biopsy results. After speaking to my GP this morning (because my stitches are infected - grim) I'm trying to prepare myself for them to say there is nothing they can do.

Reply

Sorry you're having such a difficult time. I had a lap in 2017 and they didn't find endo. I was feeling exactly the same as you, it's so frustrating to not get any answers :( Had another lap a month ago and they found endo.

I would agree with some of the others above that it's worth pushing for a second opinion from a different gynae.

bsge.org.uk/ This website shows all the endometriosis specialists - if you ask to be referred to one of these and have a lap they will be more experienced and know what to look for. So if you do have endo they're more likely to find it. It's also worth finding a consultant who does excision rather than ablation treatment of endo, so they can treat you properly then and there if they do find anything. (Most gynaes treat endo with ablation which effectively burns the lesions but some of the endo gets left behind. Excision surgery scoops the whole endo lesion out so it's supposed to be the best treatment).

I was in the same position as you and pretty sure that I had endo even though they didn't find it the first time round. My symptoms are constant 24/7 pelvic pain, lower back pain, bowel and bladder pain, painful periods, pain during sex, fatigue etc.

Let me know if you have any more questions as I'm happy to answer them and help if I can :)

Reply

Thank you so much. Your Information is really helpful. I'll try and get down to the doctors this week if I can get an appointment.

All I can do is push I guess, I'm just so scared to be pushed away again.

Do you have to join the BSGE site you find one near me?

I'm in luton but went to bedford hospital as they're the only ones who could fit me in.

Has your last lap helped you and your symptoms?

My symptoms come a week before my period, I get constipated, spasms in my back, horrid pelvic pain, can run down my legs. And my periods can last anywhere between 3 to 6 weeks and can have spotting inbetween. But My pain seems to go not long after coming on.

Does this sound like endo?

Thanks again x

Reply

You may also like...