Laparoscopy next week, scared they wont find endo

[bee109]

So after a particularly nasty flare up - where they could find no reason for it at the hospital, I bit the bullet and have paid to go private.

Must say what a experience from the NHS. I am in no way criticizing the NHS, I work as a nurse myself and no how tricky it is with the endless back log!

Got an appointment within 7 days to see a consultant and have my laparoscopy booked for a week today!! Its getting closer and I'm terrified, not so much about the recovery or the op - mostly that they will find nothing.

I honestly worry so much about this, and that everyone will think I'm exaggerating the pain.

When at the hospital a helpful nurse said "you don't look sick" - now I know she was trying to reassure me that it wasn't my appendix , but it made me feel like a fraud. Again the GP today said "you cant surely need to take 60mg codeine 4 times a day during a flare up" - I just smiled and nodded, thinking just give me the damn pain relief so I can leave! My friends think I'm weird wanting their to be something wrong - saying "wont it be better to know you haven't got endo?"

I just want them to find something so I can justify and explain my pain!!

[Emmeline14]

Hi,

I know exactly how you feel!

Did they do an MRI scan or ultrasound?

The DRs thought I had endo, plus an endometrioma and cysts on both ovaries.

I had my laparoscopic surgery last week and it turns out I had three large ovarian dermoid cysts which was what has been causing all the pain/issues - the pain got more severe in the last few years I guess because the cysts had grown!

Regardless of whether it's endo, you know your own body and if something is wrong then something is wrong.

It would be great if you find out you don't have endo and, if you don't, you might get answers as to what else could be causing the pain? If you do have endo, then at least you can be a little prepared for this news? 😊

Either way, the laparoscopic surgery will give you answers. I find not knowing is worse and causes the most anxiety.

As for friends or anyone not taking your pain seriously, stuff them! 💙

[bee109 in reply to Emmeline14]

hi emmeline - i have had numerous ultrasounds apart from a cyst (a few years ago they have been negative). My private gynae steered me away from a MRI - said i would be better spending my money on a lap - that way they can remove it if they find it!

I just have no idea what else could be causing it!

[Emmeline14 in reply to bee109]

Definitely right as my MRI suggested endo then they did the lap and I don't have it. I hope it goes well x

[Dee_EndoUK Moderator Endometriosis UK]

Hi bee109

Wishing you all the best for your upcoming laparoscopy - it's the best way of diagnosing endometriosis and should give you the answers you need. You know your own body, so trust your instincts and know that you're doing everything you can to find the cause of the pain you're experiencing. If you need more information on laparoscopic surgery, you can download a comprehensive document here: endometriosis-uk.org/your-l...

I think it's difficult for friends and family to truly empathise if they've not experienced endometriosis themselves, which is why this forum and the endometriosis community is so valuable. We also have face-to-face support groups all over the country, which you may want to join? It's a safe place where you can discuss endometriosis and all the issues you are experiencing with other sufferers who can really understand how you are feeling. To find out if there's one in your area, visit endometriosis-uk.org/find-a.... If not, we do have an online support group too (separate to the forum).

Take care x

[Arty09]

Hi there. Totally understand how you feel, especially with going private as it is so much money. I felt exactly the same I had such a long road of dismissive ‘treatment’ on the nhs and went years in pain with no real help. Eventually after doing lots of research I knew my best chance was to go private to a endometriosis specialist who knew what to look for. I was equally terrified they would find nothing! I will blame that on all the years of gaslighting from various medical professionals telling me nothing was wrong as I ended up believe maybe it was all in my head. A common story amongst us.

All my scans were clear except adenomyosis showed up on mri. At my lap endo was found in various places including my bowel, along with scar tissue and lots of inflammation. It was so validating that in a weird way a huge weight lifted off me. Laparoscopy is the only way to know and you owe it to yourself to ignore people doubting you and get some answers. Even if it is not endo there is something going on as you are in pain for a reason.

You know your own body better than anyone. And as for that comment about ‘oh you look ok’ that has got to be right up there with ‘just get pregnant’ in the league table of idiotic comments to make to someone dealing with this disease! 🙄 wishing you the best of luck for your surgery! Hopefully you will update us. Xx

[simples123]

Bee109 i literally could have wrote this post myself. I really feel your pain. I am still waiting for a date for my lap after being put on the waiting list 5 months ago. My biggest fear too is that nothing is found and then what??? All the symptoms match, my pain is getting increasinly worse each month, i too had a doctor tell me im not in pain right now just because i hadnt crawled into the doctors office on my hands and knees. Codine just takes the edge off, surely this shows how bloody painful of symptoms are. We must have the highest of pain threshold too to be like this so often.I really hope you get answers and they can help minimise your pain. Its nice to see a post i can relate to. Know one understands unless they have this. I just get 'oh no... Period pains again' 😠🤬

Iv been trying to get answers for 8 years now 😭 🤞 i get my hospital appointment soon. Wishing you luck and sending love x