Negative Diagnosis

[kfryer]

Hi ladies! Hope you’re all well!

I had a lap on Thursday and just recovering now - still feeling very sore!

I’m also feeling emotionally drained because the surgeon didn’t find any endo or any problems, but I’ve still had crippling pain in my pelvis, pain in my back and down my legs, horrible thick discharge and general exhaustion. I don’t know what to do now, I don’t want to say I feel disappointed (because endo is so horrible and I wouldn’t ever wish it on my worst enemy!) but I also need some kind of idea about what’s going on!

I’m just struggling to see any light at the end of this pain!

[Hidden]

Sometimes endo can be missed. Or perhaps they are missing some other problem. I know how frustrating it is dealing with constant pain that no one knows what it is.. currently going through that myself.

I’ve scheduled yet another surgery this year to hopefully solve my problems but I won’t get my hopes up.

My thoughts are with you and I hope you find out what is ailing you x

[kfryer in reply to Hidden]

Good luck with all of it! Let me know how you get on, you must be so strong willed to keep fighting through all of this!

K xx

[GL1906]

I'm exactly the same! Had my laparoscopy on Monday and no endo found. I was obviously relieved but now left feeling concerned and confused. I have chronic pelvic/ hip/ back pain and was hoping for answers! Now left wondering if this is a pain I just have to live with! I do have fibroids but apparantly (according to my gynae) they can't be causing my pain! As it is the only definate diagnosis I have I can't see how he can be so sure to be honest. I feel worn out and not ready for whatever further battles I may have ahead to get a reason for the pain!

[kfryer in reply to GL1906]

I feel exactly the same - not sure whether to just lay down and accept that this is what I’m going to have to go through! Fighting seems so difficult but I guess it’s something we all have to do! We owe it to ourselves to keep fighting to find something!

I hope you start feeling better soon! K xx

[Niamhy]

Hi there I know how you feel I was left with no explanation for the crippling pain I’m having but after 10 years of fighting with docs & different hospitals I went private I was told by other docs that the pain was in “my head” & “it can’t possibly be that bad” so when I went private I was told they didn’t expect to find endo even the morning of my surgery I was told they didn’t think I would get to the bottom of my mystery pain. I had my surgery on Oct 2nd this year after 10 years they had found endo when they did the laparoscopy. Before my laparoscopy I had 2 MRI because my 1st MRI was done on the wrong place! & a cat scan, multiple ultrasounds, menopause tablet & nothing was ever found till I paid to see a specialist. After I had my laparoscopy the pain returned even worse than before so I have no idea what is going on with my body but I do know I now have a name I didn’t make any of this up & I have realised a lot of people who developed this pain young have experienced docs dismissing us because we were to “young” to have a women’s problem. I hope you get an answer to your pain it’s so difficult to deal with pain like this & have no name for what is wrong you. I wish you all the best & good luck x

[kfryer in reply to Niamhy]

Thank you so much for your response - I’m not sure whether to be happy for you or not! Feels so strange being happy that people have been diagnosed with a horrible disease but I completely understand that the not knowing part is so much worse so well done and congratulations!!

I’m just dreading having to keep going with this pain, part of me just wants to give up and accept that I’m going to be in this pain no matter what (everyone is telling me it’s just something I have to live with!)

Thank you for your response though! K xx

[Niamhy in reply to kfryer]

I felt the exact way your feeling I just felt like giving up & accepting that there may never be an answer for this pain I was in! I just wanted to know the name of what was causing this excruciating pain. The name made a difference even though it didn’t change my pain it was acknowledge that it didn’t exist in my head it was real what I was feeling. I have had a lot of people who think you just need to get on with it but they don’t fully understand how bad the pain can actually get even docs don’t understand but I think you have to live with something like this to understand it. I think you need to keep fighting for answer for no one else but yourself because I really think it helps just for your piece of mind & your not on your own plenty of us have been in your position. If you ever want to talk I’m here, I wish you all best xx

[Hidden]

Could be worth asking about pelvic floor therapy as a lot of pelvic pain can be caused by the pelvic floor muscles. I had a negative lap last week, I think it's strange they found nothing but admitted I have every symptom separately, but I'm trying pelvic floor therapy to either help the pain or rule it out for the doctors so that they know I'm serious and trying to help myself x good luck with it all, you know your body better than anyone! X

[kfryer in reply to Hidden]

Thank you for the suggestion, I have no idea what that is so I’ll have a google and will definitely look into it! It’s just so difficult isn’t it, not knowing what to do now and not knowing which way to turn! It’s great you’ve got something you can try!

K xx