What if they don't find anything?

[dlg19]

Hello everyone!

So I last posted in January about how I feel I have endo and have had a horrific time being in and out of hospital every month.

Since then my pain has increased! I have two weeks of every month where I am hospitilaised for morphine, when Tramadol doesn't work and it's wearing me and my family thin.

I eventually got to see a surgeon a few weeks ago and he agreed to perform a diagnostic lap on the 28th of June. However he told me all of these horror stories of how he could puncture my bowel and I would need a colposcopy bag for the rest of my life and worst case if he puts a hole in my bowel and they don't notice I could die!

I'm just looking for some advice because I'm really apprehensive of having the surgery if it is that high risk. He also recommended monthly injections which completely stop the menstrual cycle which I could only have for 6 months however I start uni in September and thought I would have a better idea of how to manage my pain for then after surgery.

I'm also terrified that they don't find anything during the lap! What do I do then? 

Any advice would be much appreciated 

Daria X

[meg1985]

I know what you are going through and you have my every sympathy and understanding.

Firstly the op isn't a massive risk I have had 3 laps by keyhole and one was assisted keyhole. Yes there are risks but you will be fine. 

It is vital you are confident in your surgeon/consultant and if you feel your not been listened to see another one! Get a GP who is supportive and will help you find a good gyno.

I've also had the injection and have been on it for 5 months - it does relieve the pain, but for me has had other side effects. 

But wait and see what your lap finds before stressing about that 🙂. 

All the best X 

[dlg19 in reply to meg1985]

Thanks so much for your reply!

I live in Scotland, so my gyno isn't an endo specialist and I won't get to see one anytime soon unless I pay for it privately (consulatation and lap costs £3500+! not including follow up treatment)

I have my pre assessment appointment for surgery on the 11th of May so there I will be asking how many endo surgeries he has done so far, where he will be looking inside my pelvic cavity (hopefully everywhere) and lots of other questions.

I'm at the stage now I feel like I have an explanation for the pain and if they don't find endo I will be right back at square one, which is what I'm most afraid of.

I'm glad that the injections have relieved your pain to a certain extent however I'm sorry you're experiencing other side effects

Thanks so much for your advice,

Much Love,

Daria X

[Monikka29]

Hello, try not to worry, yes there are risks associated with every operation. I had 1 lap and I was worried that it was all in my head and they wouldn't find anything. But they did, it was removed (that was over a month ago now), I'm back to normal activities and I can see slight improvement (before the lap I was in pain every day, now it's odd days but they are decreasing). I'm also in Scotland, you could push to get a referral to endo specialist, either in Aberdeen or Edinburgh. I've had my endo removed by a general gynaecologist but if it doesn't help then I'll be shouting to take me to endo centre 😀 I'm also a student and have 2 kids and I want to be 'normal' for them.

[dlg19 in reply to Monikka29]

Thanks for your reply and I'm glad you're experiencing relief!

I was certain that the endo specialist centre was via private referral hence why I haven't looked into it more but I will inquire about being referred via GP.

Thanks for the advice,

Much Love

Daria X

[Monikka29 in reply to dlg19]

No, you can get a referral from your GP - my friend had endo on her bowel and general gynaecologist wouldn't touch it so she got referred to Aberdeen and she had a lap done there. If you're unsure about your consultant, I would go to your GP and explain (best to find one who is sympathetic) best of luck x