So I had an interesting experience today and I thought I would share it with you all. 4 months ago I had a lap that was supposed to get rid of the re-grown endo, however after the surgery I was told they found nothing except a small amount on the illiac vessels that was too high risk to remove.
Now, today was my 'post-op' appointment, yup, 4 months later It was supposed to be next week but my doctor sent them a letter to say it was affecting my mental health and could anything be done before then or the appointment brought forward. So yeh, they brought forward a week. Nice and helpful.
My mum went with me because she knew I would be a bit wobbly about it all and she's a nurse. So we went in and I was immediately confused by the fact it wasn't my gyn, it was another normal gyn that was not BSGE registered like mine was. We went in and he asked me how I was feeling after the lap. Obviously I said nothing had changed because they didn't do anything. He was not perturbed by this and ended up talking at me for 5 minutes. This included telling me I could just 'take stronger pain killers' and that 25% of women 'just feel pain that gets worse even if there is no endo there'.
Naturally I started crying at this point because I knew I was being fobbed off and essentially told to 'deal with it'. So my mum started talking to him for me, asking if there was anything we could do and trying to put the idea of an MRI in his head. He suggested putting me on the menopause injection (I don't know the right word for it) but we ended up strongly suggesting the MRI because I knew they hadn't looked for deep endo.
He said he wanted to check it with my normal gyn and he ended up coming back and telling us my normal one would see me. We went and sat in the waiting room and mum told me to brace myself, this might be just so they can tell me no.
My normal, BSGE registered gyn called us into his office and sat us down. He then immediately started talking about how it wasn't a specialist that did the surgery and that he could have removed the endo there, so he will want to do further surgery if that's ok. He would also organise an MRI to check for anything else that would need to be removed at the same time. He then said if I still have pain after that it might be because I have endo in my actual uterus, and in that case we would have to use a hormone suppressor (something like that?) until I was ready to have kids, and after kids we might need to go a more aggressive route aka hysterectomy. At this point I was paying attention through happy tears and bless him he looked worried and gave me tissues. I just thanked him for actually taking me seriously.
To go from one gyn telling me I will 'just have pain' 'take stronger meds' to my normal one telling me about all the procedures he will sort out to get me better...he said I would not be discharged from his care until I was sorted. It was such a difference in care, I went from being talked at to talked to, and it amazes me that doctors can be so different.
Just wanted to put this story out there for anyone who hasnt seen a specialist gyn yet - it really, really makes the difference and you are worth the level of care they give
Also as another note my mum mentioned that I was probably supposed to see my normal one to begin with - but when my doctor asked for an earlier app that letter only went to some office clerk who just booked me in with anyone. So its worth always phoning up and checking who you are going to see.