Hello,
I was wondering if anyone can explain the usual diagnosis route and how I navigate my way around the nhs please?
Apologies if this goes on but I've never actually had the opportunity to explain from the start so I'll start by telling my story and if it's easier to scroll that's fine I'll explain my confusion at the end. 😊
For as long as I can remember I've had terrible period pains,to the point where attending school and work were difficult. I went on the pill in my late teens which never made any difference to the pain.In my mid twenties I began having servere pains every six months or so on day 1 or 2 of my period.These were always in the morning and would be accompanied by sweating and feeling faint/dizzy.Given my job at the time I'd always linked it to stress. I seen a doctor about 4 years ago who said he "hadn't a clue" (I was discussing this and bleeding while taking the pill, the latter was explained to me as hormonal changes by another doc about 2 years and 3 pills later). I've mentioned my symptoms to a few doctors over the years and been tested for other things like food intolerances which now I think are probably linked to the endo.Anyway, these bad mornings, as I've come to know them, have continued on and off ever since and in Jan 14 a colleague suggested I ask my doctor about endometriosis. Due to previous experiences I didn't bother. In May 14 I stopped taking the pill with the hope to start a family.My first 'real' period started with a 'bad morning' that resulted in me taking 3 days off work. In the past I had attended work late and once taken a day off.Although I hated having to explain this to my male boss and felt useless for needing time off work for period pains I wasn't too worried health wise as this is how my periods are! After that my next period was again another bad morning and then I soon started tracking bleeding mid cycle with usual back, pelvis and low abdo pain of a period. I also noticed this pain was prominent on my left side.This coupled with my cycle being from anywhere between 36-50+ days made me worried enough see a doctor - how could I be in all this pain if nothing was wrong? (Feb 15).Finally a GP who listened!Following a US I was told had a cyst on/in (don't know) my right (not left) ovary,initially thought to be simple. A ca125 blood test returned a high count so i was made an appointment to see a gyno oncologist and a repeat US. I was told at US the cyst wasn't normal (this was a Tuesday).The morning of my appointment with I had a 'bad morning' (The Friday). I never made the appointment instead crying on the floor in agony and going to a&e. I suspect the cyst ruptured although this hasn't been confirmed and gyny wouldn't see me. I luckily got my appointment the following Monday with the gyno oncologist said she thought the US she had seen was after the Friday as the cyst had lesions (stupidly I didn't ask what that meant but I believe it's scar tissue).She said the cyst wasn't normal but wasn't endo symptomatic so wanted a better look.
So, almost there now! I was then sent for a repeat ca125 and mri. Letter 2 weeks ago said Ca125 is back to normal and mri suggests endometriosis on my right ovary. A request has been sent to a local consultant about a possible laparoscopy. Pain wise I now feel some on my right daily andsometimes a twingy/pulling sensation when I'm in bed. I've have a period sincewith bad pains especially during bowel movements. I often get the sensation that I can't empty my bladder fully. I take a lot of painkillers at the moment and don't like to. As I mentioned earlier some food for me is a no go such as white bread and for years now I go from rushing to the loo to not being able to go. As I've been told there's nothing wrong I live with it. At the moment, although not good news, this diagnosis is some news which can explain years of wondering for me but I'm worried I'll be fobbed off again if I don't push this myself.
So, if you're still awake I'd welcome some friendly guidance and opinions please? My questions, having just seen a GP today (not my normal one) are:
-Is it normal to have endo diagnosed by mri? GP said mri as good and lap pointless to just look.
-Can I 'choose and book' my consultant if I have suspected endo?
If not when? If so how? GP said I was getting ahead of myself assuming I'll get a lap so I need to see the local consultant before I can 'choose and book' and also said if I did I'd just go to our next nearest hospital which wasn't my understanding of the system at all?
-Would the investigation of this potentially result in fertility investigations or do Ineed to do this via my GP?
Finally, thank you in advance for any responses. I appreciate that I've really gone to town above but didn't realise how much I just needed to download all of that even if it's never read.
The GP I met today told me quite bluntly that this was "the worst thing a gyny doc deals with (his wife being a gyny surgeon) and the worst thing a gyny patient can have...If it's in your ovaries you may as well have then removed." Mmm thankfully I'm not as melodramatic as him and do not consider myself to have the worst of anything I could have, although you've gotta give it to him for the uplifting sentiment!
Thank you x
Painkillers and long term effects on the liver
Raised ca125 
Ovarian cyst found 5 weeks AFTER laparoscopy - so confused!
Endometrioma & complex cyst - confused!
Endometriosis lesion / cyst right ovary post meanapause ... Had one 12 years ago .. this one is big very worried
