Hi all im new here so please be gentle though I can tell from reading the threads you’re all a lovely bunch so just reaching out for support really.
So I’m turning 44 next month, have 4 children and past 4 years had the most ridiculously heavy period that got progressively worse over past year. After a year of going back and forth and finally having a breakdown in the doctors office as it all got too much my GP finally decided to listen to me. I am in pain all month with a heavy feeling in my abdomen and back, my period pain is unbearable like the start of contractions and the bleeding extremely heavy. I also get pink watery discharge between periods and just generally feel unwel and super tired.
cut a long story short the gp decided to do a ca125 test as my pain is mainly on my right side and she wanted to rule out ovarian cancer but the results came raised at 49 and then retested a month later and still raised but but lower at 41. I had a TVS which showed ovaries were fine but my endometrium was quite thick at 19mm. The doctor put me on a 2week cancer pathway (currently on week 4) and I was due to have my Pipelle biopsy and found out today that they had also scheduled me for a hysteroscopy as well as iud fitting to control the bleeding which I was aware of.
however after waiting all day my surgery was cancelled as they had over run - I had psyched myself up and was really anxious as it is about it and jus feel so disappointed.
also felt a bit unheard today as for a number of reasons I had requested an all female team - I dont feel comfy having a male do my procedure or be present while I’m in such an undignified position but felt like the consultant and a couple of the anaestheticians weren’t very understanding - they kept saying well ther will be male theatre staff not much we can do. But I know if that was me I would do everything to make my patient comfortable. One of the anaestheticians was super supportive and tried to ensure no male would be present or deal with the swapping of towels etc in recovery (to check for bleeding) as I was not comfy was this but it felt she was the only one advocating for me and felt like some of the staff felt I was asking for too much and I really don’t think I was! Has anyone else felt this way or been in a similar scenario?
im already super anxious about what’s going on in my body and the not knowing and today has totally knocked my confidence and made me feel more anxious in more ways than one!
Not sure when il be called back in - anyone else had there surgery cancelled and if so how soon were u called back? I take it two week pathway is not accurate as I’m already on week 4?
thanks in advance for your support! x
Hi
Welcome to the Womb group.
So sorry to hear that you had your procedure cancelled today. I can imagine how I would have felt after psyching yourself up and waiting all day.
The 2 week pathway from my understanding is for the initial appointment but sometimes the actual investigations take a little longer. It can take a while longer to have the procedure done under general anaesthetic. In my case it was done in outpatients and it was done within 2 days.
I would hope that as you were cancelled at the last minute today, that they will try and get you in again quickly. I wonder if it is worth asking whether there is a short notice cancellation list. Or even whether it may be quicker done in outpatients- if that is something you would consider.
With your symptoms, it is normal to be referred on the urgent pathway and to have the scans done in the first instance. Where the scans show hyperplasia (where the endometrium is thicker than they would like) it is normal for the next step to be either a hysteroscopy/biopsy or both. The mirena coil is sometimes used to treat the heavy bleeding. I was told that they could also prescribe medication to lessen the bleeding but not until after the biopsy was done.
With CA125 it is most commonly used in ovarian cancer and a high level would indicate the need for further investigation. Anything under 35 would be considered normal and yours is just a little higher. It can be raised for different reasons and cancer is only one of them. it is used as a useful marker in endometrial cancer however in itself it can not rule out or diagnose cancer. Only the biopsy can do that. The hysteroscopy is just to have a closer look.
I am sorry that you did not feel listened to with your request for an all female team. It is of course your right to ask for this- although I suppose it could possibly delay things a little. I personally did not mind who I saw throughout my diagnosis and different treatments but if you do feel uncomfortable then do ask.
I can understand that today was not easy and that you just want to have answers as to what is going on inside you. I wonder if it is worth contacting your GP in the morning. Mine was able to contact the hospital direct and get answers. If you at least new when it will likely be, then at least you have something to prepare for.
Jane
