Feeling lost and looking for reassurance

Hi all,

I am looking for some reassurance or similar stories to my own. Sorry for the long post!  

I am 38 years old and have been suffering with lower backache and a painful (ranging from stabby to feeling full) lower abdomen on the left hand side. The backache and lower abdomen pain are constant and gets no worse during my cycle. The pain doesn’t get worse with exercise but stretching brings no relief. My periods are regular (between 25-28 day cycle) and have normal period cramps the day before and day 1 of my cycle. I am not heavy and bleed for about 4 days.
I first went to the GP back in November with concerns for my abdo pain but they did not seem too concerned. Later that week I went to A&E with stabby pains, they felt my tummy, referred me for an scan and sent me home. In the meantime I paid for a private scan where they found a chocolate cyst that they said could account for the pain. A month later I had my NHS scan where they said no cyst was present and maybe it had ruptured but put me on a long waiting list to see a gynaecologist about possible endometriosis. The pains and discomfort remained.

Then for the past few months I have been bleeding between periods and noticed pink watery discharge and have been so tired, so I returned to the GP but she didn’t seem concerned and asked me what I wanted her to do. I requested that whilst we wait the 1 year + for an endometriosis appointment , that we rule other things out to which she suggested a blood test. which I had yesterday. Less that 24 hrs later a nurse has called me saying they have requested an ‘urgent’ scan due to high ‘cancer markers’ and now I am stressing. 

I have felt ‘off’ for a while now and feel that endometriosis symptoms do not align with mine. Has anyone been in the same position and it was endometriosis? What was the next steps? 

im trying not to think the worse but google isn’t helping. 

best wishes

Jo

  • Hi

    My story is fairly similar. About 8 weeks ago I went to GP with pains and intermittent bleeding, my GP was really good and requested bloods including cancer marker and referred for scan. 

    I booked a private scan as was quicker and this showed a large endometrioma (chocolate cyst) on right ovary. My cancer marker CA125 also came back high. I was then referred to gynae urgently on 2ww.

    Gynae consultant done a scrape biopsy of womb and arranged a hysteroscopy and advised my case would go to MDT.

    I also had a CT scan of chest, abdo and pelvis. During hysteroscopy I had a uterine biopsy and removal of polyp. 

    MDT decided that my cyst was suspicious for cancer and I had a repeat CA125 which came back high again. I am now listed for full hysterectomy and removal of ovaries and fallopian tubes.

    My endometrioma cyst is about 8cm and has some solid components to it. I have been told I likely have endometriosis as it would be very rare to have an endometrioma without endometriosis. My intermittent bleeding was likely due to the polyp and the hysterectomy is because of the risk of cancer involved.

    I dont know if the pain I have is due to endometriosis or the cyst as I was unaware of endometriosis prior to the last 8 weeks.

    I'm 46 so a bit older than yourself.

    I think just take each step as it comes, it is hard and I hope things work out OK for you and that you get to the bottom of what's going on.

    Take care x