Possible Scar endometriosis, but struggling to get help.

[ItsMeBe]

Hello all,

New here. I find myself here as I actually don't know what to do.

I have been living with pain now since December 2021. My forst episode was so bad that I had thought I had appendicitis, but a nurse insited I had "period ovary pains".. I'm 30 years old, had periods since I was 13 and have four children. I knew this wasn't just period pains.

I had so many visits to the doctors, and currently awaiting a gyne appointment since last year, for April this year, but I wasn't even reffered to gyne because of this.

My pain is worse when on my monthly, but there isnt any pattern, it literally hurts when ever it like. I can be perfectly okay and then few hours later full on pain. It literally stops me from doing anything, bed rest because it is too painful to walk. No medications help, I was prescribed Naproxen once too which did nothing at all. The pain is lower right abdomen. Deep behind my csection scar. There is also a lump you can feel when pressing, this is where the pain is. All tests have came back all clear, I was also told my CT was good, as no hernia was present. One doctor suspected an incisional hernia, however that ct confirmed otherwise. I was told a few months ago from another doctor (many months after I had the no maligency results by the first doctor), that the ct actually showed scar tissue in the exact area I hurt from! Scar tissue! My ultrasound lady didn't scan that area sadly, only did an internal scan which showed lining was super thick of my uterus, which is why I was finally reffered to a gyne. I've found it so hard for doctors to listen to my concerns as in the past I was diagnosed with PCOS so every appointment has always bought up I have pcos and brushed off my pains with that. Although I am pleased that it was investigated with ct scans, ultrasound was actually only given because of heavy bleeding but its been a halt since the ct scan results.

I'm hoping that the gyne will listen to me. It has to be scar endometriosis, it has to be. It showed on the CT scan, in the exact area, but why can't they investigate that further?

Can anyone help me with how they got diagnosed please? Do I need to wait for my gyne appointment to discuss or can I go back to GP? I hate living in pain, on and off, when ever it likes.

[TogetherWeAreStrong Moderator Endometriosis UK]

ItsMeBe welcome to the clan! You are in a safe place where all we want to do is help and support each other.

I am very sorry to learn the frustrations you have faced, so well done for getting this far.

We have some really useful information on exactly the question you have asked regarding diagnosis, on our website, I have provided the link below:

endometriosis-uk.org/gettin...

Please don't suffer in silence, you are in pain which is stopping everyday living, the medication you are currently on is not working and you are waiting for a full diagnosis, your GP should be able to support you during this time.

I hope you are resting if need be or you are able to be up and about, even if it's just for a while. Please feel free to share your journey and thank you for such an open and honest first post.

[BloomingMarvellous]

Sorry you’re in so much pain. Given so far investigations haven’t revealed a huge area of immediate to rush into the thing that flashes at me is your mentioning of the thickening of the womb. I don’t know if anyone has mentioned Adenomyosis to you which is in the same family of issues as endo. The two are often both found.