I feel like i'm being fobbed off......

[worth71]

Hi - i've written on here a few different times but basically my story is i've been seeing my gp for about 18mths, i first went there with very heavy bleeding, contraction type pains when on periods and periods all very irregular, i went as it was interfering with my life so much and affecting my job severely too.

i have had a ultrasound, they just said some fibroids and cysts, thickened endometrium so was sent for a hysteroscopy and biopsy, all came back clear but they fitted a mirena at the same time too - i asked at both appointments about my left side of my pelvis, that it constantly feels like its tugging and pulling, along with frequent sharp stabbing pains, and that most of my pain stems from that side - the ultrasound lady said she couldn't locate my left ovary (yet in the report she wrote all was fine, why would she tell me one thing yet write something completely different) at the hysteroscopy app the doc and consultant said the mirena will sort all that out.

the mirena did not sort it all out, it lightened my periods for a while but i still bled, and even 11 months on i still have a 10 day period, then anything from 7-14 days of mucous or spotting, then another 10 day period, the pain has got progressively worse too.

my last gynae app in oct, the doc just said lose some weight and the pain will go, eat more fibre, but lose 5st and we may consider investigating further but we wont need to as all your problems are down to your weight, i felt so patronized, i know i'm overweight but i have gained weight since all these problems really took hold on me.

in the meantime my gp sent me for an mri scan, all i got told from this was that there was a large cyst, probably, and that maybe it is chocolate cyst but we don't know for sure, rescan in 12 wks, which that scan date is due through anyday - she also said the cyst is already too large to respond to hormone treatment, i haven't even been told the size of it. surely if this is a choc cyst then if it ruptures it will spread more endo into the pelvic cavity?

so, i let it go for a while but the last 2 wks or so i have been researching cysts, all the types etc etc - and i have found that most women when an ovarian cyst is found then they are usually rescanned and blood tested (CA-125) - i know the cyst is still there as i can feel it, every minute of everyday its niggling away at me, i am now some days struggling to walk, and the constant pain in the lower left side of my back is sometimes so awful, and at least once a day it causes me to almost collapse, it feels like the support just gives out, i know that is probably a nerve pressure thing.

but i just feel really ticked off, they are just leaving me to plod on, i have already lost over 2st so i think i should at least now be on the waiting list for my lap to see whats going on as living like this is so hard, as i know you all know, the daily pain, then the daily bouts of chronic pain, the way my bowel movements are causing me issues - am i allowed to see my scan reports?

sorry for the rant xx

[worth71]

i meant to say that in the last 3 months or so i am beginning to have the same pains on the right side, surely anymore cysts etc would've shown on the mri but if i hadn't mentioned those newer pains would the doc withold that info, as in well she hasn't said anything so no need to say more than is required.

[rsb2]

I am having issues with being fobbed off with IBS after my second lap. I have requested all of my medical records and have asked my doctor to transfere me to another consultant at a different hospital. I had doubts about my diagnoisis and treatment for some time now. I read my notes while i was in hospital and i learnt loads about myself. They treat you like a child and hold back on much of the information they have about you. Learn as much about your condition as you can and if you have lost confidence in them seek out someone else.

It can be overwhelming and scarry facing up to people. I have realized that some docs are way above their heads and waiting and seeing is their way of dealing with it. What part of the country do you live in? Research endo specialist centers nearby and request a specific consultant when you go to the doctors. Many private consultants do NHS work too.

I wish you all the best xx

[worth71]

thank you for commenting - i have decided to get this next scan done, then once i'm referred back to gynae then i will have to start shouting a little louder xxx

[tracie_666 in reply to worth71]

bless ya, i kinda understand what you're going thru. i've bin backwards and forwards to specialists since i was about 13 or 14 and it was only in november 2009 that i was listened to. i've been researching enod since i was 12 because of all my problems and i was always told that there was nothing wrong with me. after my 1st lap in jan 2010, it took me 16 months of been a total cripplefor them to listen to me again and that was after seeing a different consultant. i've not been able to do anything for myself for so long and i didnt think any1 would ever listen to me. theyve tried telling me that it's all got something to do with my bowel, but the bowel specialist doesnt think so. my last lap was 12th may 2011 and i was riddled with enod, which was a suprise for the consultant. i went to drs a couple of weeks later and he let me rad the follow up leter fiorm my consultant and it was only coz of me requesting to read it that i know that i suffer with PCOS as well as endo. they do keep things from you, but you have a right to see any letters or results fom your consultant and blood tests etc.

my advice to you is to do as much research as you can so that when you do start asking questions, your dr will see that you know whatyou're talking about. my drs and consultant are very shocked at how much i know.

keep your chin up and things will start moving forward for you. just keep believing hun xx

[stevieflp]

worth71

Like others say, you really do need to do your research.

I originally saw a gynae cons who advertised as treating endo. I had a lap with her where I came out black and blue afterwards and she breezed through after the op, said I was a complete mess and best thing for me was a full hysterectomy and oophrectomy (removal of ovaries). Said she could probably fit me in 6 weeks time and to phone her secretary and book myself in - and off she went. Well once it all sunk in I felt pretty traumatised. What kind of a 'mess' was I in! I know I was 46 at the time but I certainly was not ready for an enforced menopause.

I went back to see her and she just fobbed me off and said "oh you are obviously overly emotional about this at the moment - I will put you on Prostrap (chemically induced temporary menopause) and once you see that helps, you will want to go ahead! I was a bad patient and I refused to put myself through those drugs too as I knew I would react badly to hormonal interference.

It just did not make sense to remove your ovaries to prevent hormones triggering endo but to then need to take replacement hormones, albeit I know you can have non-oestrogen ones. I woud still be in a mess though and riddled with endo!

In end I came across a website of Mr A K Trehan. He is one of the best endo surgeons in the UK. Even if you can't get to see him, his website is very informative and will arm you for dealing with some of the lesser knowledgable consultants who think removing your ovaries and blasting you with HRT is the cure all. . even when you have stage 4 endo and it has frozen your pelvis.

I asked my GP to refer me to Mr Trehan (luckily my firm provided healthcare as I was outside of his catchment area). I had this op 17 months ago now and have been so well and free of endo pain since. It really was the best thing I think I could have done for myself and I don't need HRT as I have my own ovaries still and no hysterectomy.

I would recommend to you to go with your instincts. If the treatment you are getting does not feel right for you and you don't have confidence in your consultant - take your time before agreeing to treatment - act in haste and repent at leisure comes to mind, although I know with this awful thing you get desperate for anything to help.

Research and ask to see someone else - preferably an endo consultant rather than a general gynae. General gynaes tend to start off by offering mirena, then chemical menopause, then hysterectomy, if you are lucky you might get offered patch excision surgery but, generally they are an expert in a wide range of gynae problems and not always dedicated to endo as is an endo consultant (obviously some will have made it their speciality and will be excellent but yo need to be aware of who yo are seeing).

It was difficult standing up to my first consultant - obviously they don't like it. She make me feel that i was going down a rocky road rejecting her advice. she said the surgeon i wanted to see was 'ok' but a bit full of himself and tried to get me to see a pal of hers at the local hospital - when I researched, although he did keyhole, he was not an endo specialist at all!! I would have regretted her advice for sure and my own instinct was sound. Mr Trehan was brilliant.

Research and try not to be intimidated, it is your body, your treatment, your life .. I so feel for everyone on this path as it is so difficult. I Hope you find the right help.

[worth71 in reply to stevieflp]

thank you - i will start some research into what is available locally to me, i have my next scan in 2 wks, i wont see my gp til 2-3 wks after that she will refer me back to gynae so i'm looking at about 10 wks before i see gynae i reckon, so it will give me chance to get prepared, as i know this time i wont be sitting back taking it like i have, plus by the time i see gynae hopefully i would've lost more weight too, as i'm being very disiplined with my diet at the moment, its taken me about 3 months to lose 2st, so would hope another 2st will come off by then - fingers crossed xxx