Fed up feeling like this - should I push for another lap?

[Red262]

Hello everyone, I'm new here so let me tell you a little about my story...

I'm 25 and have been diagnosed with endo following a laparoscopy about this time last year. I got my periods really late in life (age17/18), but every single one has been painful and heavy (and my cycle averages about 20 days). I tried lots of things to ease this including the progesterone only pill, the implant, and the Mirena (which I still have) - all failing to make things much better. I kept going back to the GP with very little progress - I was given Mefenamic Acid, Naproxen, Codeine and Tramadol before I was referred to a specialist. By this point I was 24 and in constant pain - it got to the point where I could only walk if dosed up with Tramadol. I was sent test after test, though all came back normal of course. Finally I met with the consultant who gave me two options: do nothing and watch or do surgery, which might not find anything and might also have no effect. I was under the knife only a month later (a cancellation made things quick!). The surgery itself was absolutely fine, and shortly after I came around my surgeon visited and I asked the all important question - did you find anything? I was so relieved when he said yes; just to have a diagnosis and a name for this thing that had prevented me living my life was a huge relief. So many doctors had dismissed my pain, and this advocated it - not that I should have felt like this. My second question was 'did you remove anything on my right?', to which my surgeon replied no, most of your endo was on your left. I was shocked. The worst of my pain was on my right, and this was the pain that mainly limited my mobility. I was thankful for the diagnosis but left with lots of questions, none of which have been answered even still.

My pain eased a lot after surgery, but recently my right sided pain has come back and it is worse than ever. I had a terrible episode last week which left me completely unable to move and throwing up from the pain. I've been sent for bloods and scans again and I am now waiting to talk again to my consultant. I have never had my hormone levels checked. At my last ultrasound the sonographer said that I showed lots of abnormalities in line with my endo - tilted uterus, lots of adhesions and some sticking of my ovaries (no visible endometrium though). I'm still not sure what this means and haven't officially had the results yet - my appointment with the consultant is to discuss these. They also said I had some free fluid and signs of ovulation, despite being on the Mirena.

My question for you all is do you think I should push for another lap at my appointment? Or do we think that nothing will come of it? The discomfort following the surgery isn't really a concern for me as it's nothing compared to my daily pain levels from endo. Also, do you think that I should ask for hormonal tests? I think my hormones are all over the place, since on all forms of contraceptive I have continued to ovulate and have even had periods. The implant caused me to bleed nonstop after a year of its use.

I'm feeling hopeless again and don't know what to do. I finally felt like I was managing my pain and getting on with life again, only to be struck by a few really bad days that are now turning into bad weeks. I would really appreciate any suggestions you guys have, whether they are on surgery, pain management, or hormones.

Thanks in advance,

[Moon_maiden]

HiIt’s a lot to go through, you’ve had a lot to cope with.

I’d look to getting a referral to a BSGE centre so you can speak to a specialist about it and whilst that is in process, ask your GP to refer for an MRI to check things out. There are other things it could be and you need to confirm what’s causing your pain.

Once you have a better idea you’ll be in a position to make a more informed decision.

I don’t know if this helps or not.

[Red262 in reply to Moon_maiden]

Hi Moon_maiden,

Thanks for your reply! I am with an endometriosis clinic at the moment, and it was the specialist who sent me for the ultrasound. I've since had another appointment with them where they've interpreted the findings with me and it turns out they found a nodule which they think is deep infiltrating endometriosis on my bowel. Following this they then sent for an MRI to see if they can see anything more in more detail, but said that either way another surgery is highly likely. They're going to let me know once they've discussed the MRI with a bowel specialist.

I hope the MRI shows whatever is causing this unbearable pain, whether it is DIE or something else like you say. It's the not knowing that is the worst. Hopefully I'll hear back soon.

[Moon_maiden in reply to Red262]

That’s great, all getting organised 😀I hope it doesn’t take too long. 🤞When you do get the scan appointment through, depending on when it is, you can try for cancellations, I bought mine forward by about three weeks last year.

Are you managing the pain at the moment?