No endometriosis - now what?

I had my laparoscopy yesterday, procedure went well. The gynecologist found no endometrial growth, no cysts, no adhesions, no sign of infection. This may sound weird but I am disappointed. Not because I wanted to have a chronic illness like endometriosis, but I had looked forward to a definitive diagnosis so I could at least look for ways to manage whatever I was dealing with.

Now it just to wait on the biopsy and whatever other results from yesterday's procedure. That won't be for another two weeks. My doctor says we will have to investigate further of course. Meantime, I'm still in non-endo/endoish pain plus three new incisions. The good news is, whatever pain drugs they gave me at the hospital yesterday are amaze-balls! Cause while the incision points are sore, they aren't too painful at all.

Has anyone here had a laparoscopy that revealed "nothing" was wrong from an endometriosis point of view? Any suggestions on other issues that could present in this way would be welcome.

[Hidden]

I've heard that some laps do not show up some endo as they can't get to the right angle to see it etc and it can be hidden?

[Hidden in reply to Hidden]

Sigh. How does one find hidden endo? *sobs*

[Evie1426]

Aw hun really do feel for you. I'm two years down the line and haven't had a lap yet! My GP is reluctant because "scans don't show anything". Doesn't seem to matter how much pain I'm in. Keep going to the doc and OOH surgery if needed. Ck was right, endometriosis isn't always spotted by a lap. Really hope you're able to find some sort of resolution soon xx

[Lizziecotterill in reply to Evie1426]

Scans won't show anything anyway!

How thick are done gps!

The only way to diagnose endo is a lap!

[nomorepain84]

I definitely sympathise. I am also awaiting results of my most recent biopsies. I had a scan last month which was rather inconclusive and they didn't see endometriosis but like many have said on here, they are still not ruling it out. I have a good consultant now and I am hoping that I will finally start getting some help. I have been signed off work due to my poor health at the moment because between unexpected bleeding, nausea, chronic pain and exhaustion I am not much use to anyone. I believe that we have to trust our own instincts and keep pushing for a diagnosis until we get one.

[Hidden in reply to nomorepain84]

Please don't say you're not much use to anyone. You are helping here to reassure and clarify for us and yourself. I'm truly sorry that you are having the level of discomfort you've described, but I hope your consultant will work with you to get some answers.

[Ren95]

I had my laparoscopy last august and they didn't find any Endo. I am still in a lot of pain and have all the symptoms. My consultant told me that although it hasn't been found in the laparoscopy sometimes it can take years for it to develop and be seen. You just have to stay positive and not give up.

[Hidden in reply to Ren95]

That is mind boggling to me....that it could be there and not visible but causing so much misery. I will try to stop speculating and just focus on healing (I'm miserable with these sore incisions) and when I see my gyne in 2 weeks I shall see what other options he wants to explore.

[emaw15]

So sorry to hear you haven't had the results you wanted. I am in a similar situation, I have my lap in 2 weeks today and I'm so scared they won't find anything, as you say I don't wish for endo but after having loads of tests this is the last thing it could be, but my doctor has warned me that 50% of the women they do the lap on don't have anything there! And it's so hard to go on in pain but to go on not knowing what causes it is even worse.

Hope you find out whats going off with you and hoping I get given the same pain killers as you! xx

[Lizziecotterill]

Firstly huge hugs!

I know this is stating the obvious but they could if missed it!

[Hidden in reply to Lizziecotterill]

I would find that so unfunny it isn't funny!

In any event, I am not the type to give up without an answer. Something is off in my body and I will find out the cause. Will explore alternative medicinal approaches as well.

[Suzzee]

Hope they get you sorted out. We know our body, and we know when something isn't right. I was diagnosed a week ago, had lots of endo deposits removed, got adhesions etc, but won't know much until 26th Aug. The weird thing is, I've been ill for years, horrendous pain especially in my lower back, terrible fatigue, seizures and all this intensified around ovulation and around my period. I was diagnosed Fibro, CFS, Epilepsy, they thought I had MS at one point. I kept saying it must be something to do with my periods and hormones, never really knew about endo, drs were like 'it's nothing to do with that'. It wasn't until I started getting severe pains in my lower right side and hip and that led to a lap and diagnosis on Wed 9th July...still in pain from the op, so will see whats said on 26th Aug. Good luck and I really hope you get sorted xx

[Malachitegoose]

Drs are working stuff out as they go, they should not act authoritatively because they have done a few tests, including lap and found nothing. Some drs think that as a Dr they should be authoritative and state things definitively, but that may mean they end up being wrong.

If you are in pain and it seems like endo pain they need to keep investigating til they get to the bottom of it and come up with a treatment plan. I would have thought this might be because they haven't yet found the endo as it could be somewhere they couldn't see or it might be something else.

I was told definitively I didn't have endo when I was having anaemia/heavy periods investigated. I had an elective sterilisation whilst having endometrial thermal ablation and they found an endometrium in my abdomen. I'm still waiting for my first proper consultation, but I finally have it booked in May with specialist. I had to exert a lot of pressure to get it though. I'm still not happy with how I have been treated and I'm not sure I will just accept what the doctor recommends. I think it is important to read around, speak to other endo warriors and friends and family before making major decisions on surgery. I find it strange that I lived with low level symptoms for 25 years and was able to live well and as soon as I had surgery and started working in a stressful job I got debilitating symptoms.