Second diagnostic laparoscopy worries - Endometriosis UK

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Second diagnostic laparoscopy worries

Sarahkaye profile image
7 Replies

Hi, I am booked in to have my second laparoscopy on Thursday (so lucky to under the circumstances) but I'm worried they won't find anything. Is this weird?? I had my first lap over 9 years ago and I was told that all was fine and it's probably IBS.

I was disappointed they didn't find anything and I struggled on after this thinking it must all be in my head. I tried to ignore all pain, didn't mention it to anyone as I thought it would go away if I ignored it!

I finally went back to see a consultant last year (after getting to the point of going to A&E in horrendous pain) and asked for a second lap.

I am so worried that they won't find anything again, as I will feel like I have waisted thier time and worried my family all for nothing.

Anyone else feel like this?

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Sarahkaye profile image
Sarahkaye
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7 Replies
Jade3006 profile image
Jade3006

Hey!

You’re not alone. I’m undergoing diagnostics atm as my doctor suspects that I have endo, but compared to what I’ve read my symptoms are extremely mild and so when I talk to my consultant at the end of the month I’ve a feeling I’m just gonna get blown off and told it’s probably something else. I feel your concerns and I’m worried too but if something doesn’t feel or seem right we need to push for answers. As I keep seeing, painful periods aren’t normal and shouldn’t be ignored, we shouldn’t have to just “cope” with being in pain all the time. If it all comes back fine but you still don’t feel right, keep seeking alternative opinions. You’ll get answers eventually

Sarahkaye profile image
Sarahkaye in reply toJade3006

Thanks for your kind words Jade3006 sorry to hear you feel the same. Fingers crossed for your journey to diagnosis. X

Redkitten profile image
Redkitten

I had my first in Nov 18, (NHS) and was told nothing there and was just dismissed back to my gp.

Felt a fraud, so back to GP in Feb 20 as I was still in agony and knew something not right. March 20, 2nd lap but private this time. I was waiting to be told nothing there, but i have severe Endo, my tubes are blocked and was told only way to have a family was IVF but privately. Not news you want at nearly 42! Now waiting for 3rd lap to go in and get it excised.

I cried when he told me, i knew something up and i am still at a loss why nothing found first time round, esp when its so bad .

We know our bodies!!

Sarahkaye profile image
Sarahkaye in reply toRedkitten

Sorry to hear this and that its got so bad for you now.

I hope that you can get this sorted out and be pain free soon. Xx

Blb21 profile image
Blb21

Heya,

Try not to worry too much although I know that is so much easier said than done!!

So I had my first diagnostic lap in 2014, they gave me a diagnosis of "presumptive extensive endometriosis pouch of Douglas". He didnt remove anything at all because apparently I'd need a bowel prep.

I was 21 at the time and didn't understand endo and the guy actually creeped me out a bit so like yourself I pretended to ignore it and thought it would go away. It did not lol!!

Fast forward to 2020, my symptoms got alot worse, but not nearly as bad as anyone else I've read, so again I still assumed all in my head. I actually did a ton of research and went and had a private consultation in Surrey which is 75miles from my home, as I really didnt trust my old surgeon. That private consultation was the best thing for me, he really knew his stuff. He looked at my history did a quick examination and said he thinks I do have endo but cant confirm without another lap. So I went ahead, he referred me to NHS hospital that he works at as I didnt want to pay private for the op. I had my lap last week, I went into it thinking I am wasting my time I bet they dont find anything there and they will tell me it's all in my head.

I had no bowel prep, they searched every single nook and cranny, did excision on the endo that they did find, they said everywhere was clear apart from my left pelvic sidewall, so the excised the endo there. They said pouch of Douglas was normal. (So total contradiction to my last lap, not sure what the last surgeon saw, perhaps he got his locations wrong or didn't have his glasses on 😬😂 if you don't feel something is right, keep going until you find someone you trust.)

From my experience, I would say please dont think it's in your head, even if with this lap they say all clear, if you still think something is wrong keep going. Is your surgeon/hospital on the BSGE list? If so, you should be in really good hands 🙂 hope all goes well for you, keep in touch!!

Sarahkaye profile image
Sarahkaye

Thanks for your reply Blb21 it really helps to hear others experiences. I have bo idea who my surgeon is, as die to covid it's been cancelled and rearranged at a different hospital. Its pot luck I guess!

Glad you finally got a diagnosis and hope you are on the right path now. X

Kittie5117 profile image
Kittie5117

I think this is all part of the problem. Reading posts on here, people know their own bodies and that something is wrong, but often we are told that there is nothing to see or be detected by a scan or whatever.

I think my biggest fear apart from having serious complications from surgery is that they tell me that there is "nothing" wrong.

It can make you feel like it's in your imagination or that you are making a big deal out of something, but I reckon we put up with a lot of pain and symptoms before seeking help. I had bleeding from my bowel and I was beginning to thing that I was imagining it, so when I had to do the poo test and they detected blood in the sample, I felt a weird sense of "relief", as though I was being believed!

It shouldn't have to be like this x x

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