fed up and still awaiting diagnosis!

[gabsx]

hey!

so since going to the gp since November 2018 , I’ve only just had my ultrasound where everything was “normal” I am still in pain on my lower left side pelvis/tummy which goes into my groin and told to just go back to my go, my current gp who has actually been very helpful is leaving so will have to go over everything again with a new one. I know ultrasounds arently reliable but was wondering how to push for further investigation as I am fed up of hearing about possibility of IBS which I’m almost certain I don’t have (I also sufffer heavy periods to the point I frequently leak through to clothes) I am so tired all the time probably due to stress and anxiety but feel very low and like I am getting nowhere... any advice would be much appreciated! have found this forum so helpful reading other people’s experiences! xxx

[Hidden]

I had my first appointment with gyne yesterday: they weren’t much better. I’ve had three TV scans and she is sending me for another.

She was obsessed with how much I was bleeding. Told me I need to have the coil to help with the bleeding but beyond mef acid (which doesn’t help) there’s nothing they can do for pain.

She did agree to do a diagnostic laparoscopy after I told her multiple times the bleeding wasn’t my concern; my concern is not being able to work, to pick my daughter up from school or play with her and consistently doubling over all because of the pain

She was so dismissive of everything I said. Kept repeating about how it wasn’t unusual. What annoyed me the most - as well as the dismissivness - was the refusal to let me finish explaining my experience and the assumption that I hadn’t already tried all possible hormone treatments (been in some form or another between ages 16-27; all had adverse effects)

I’ll be submitting a complaint to the ward manager, responsible consultant, PALS and anyone else I can think of.

Then I’m going back to my GP for a choose and book referral

I realise this probably isn’t particularly helpful, but I think we need to be more assertive to be taken seriously (I’m a bit of a push over hen it comes to professionals). I’m done being nice now. This has been 10 years now I have been highlighting gyno pain - and always be told it’s IBS or normal. It’s neither and it’s debilitating my life and I’m not putting up with any other medical professional that tries to tell me “it’s normal”

[Xroisinellenx in reply to Hidden]

Hi sorry to be really nosey but which hospital was this at? Xx

[Hidden in reply to Xroisinellenx]

Not at all lovey: Queen Mary’s in Wandsworth, London. The more I think about the more I realise how fucking awful they were (excuse the language)

[ChloeV]

Hi. Sorry you are having such trouble. Have you had a look at this info:

endometriosis-uk.org/visiti...

It is quite helpful. The diary is a good way to show your doctor the occurrence and severity of your symptom if you colour code them a bit it usually shows a really clear pattern related to your period cycle.

All the best and hope you are able to move things forward soon.

[pinktiger33]

I had my first appointment with GP about a year ago and have been through them telling me it’s IBS to telling me it must have been my coil. I have had my book removed and have been altering and monitoring my diet and I am sure it is neither! So finally been sent for gynaecologist app which I am awaiting.

What kind of ultrasound did you have? I was sent for 3 different types, and after the first two was told everything was completely normal and to worry about. I pushed for the third one as I really wanted them to be sure and I knew something wasn’t right, and they did a transvaginal ultrasound (which I even had to push for once I turned up for the ultrasound as they tried to just do another standard pelvic one) and they found cysts on my ovaries which then led to more blood tears and a diagnosis of PCOS. This then led them to take me a bit more seriously and finally ask me if I would like to be referred to a gynaecologist.

Sorry for the long reply but basically my point is, as I have been hearing a LOT from basically everyone I have spoken to on here, the best thing to do is just to keep pushing and insisting what you want to happen. At the end of the day we know something is wrong and we have a right to ask for help and treatment. Really hope you get somewhere soon!

[Rbdcrlm]

I had my first appointment with my GP in May 2018 because I was bleeding rectally and I was petrified I'd just be labelled as IBS. A lot of ED visits, GP visits and pushing for further investigation and waiting around I finally got a referral for a gastrointerologist and colonoscopy was performed in September. I was petrified they'd find nothing but instead they found I had endometriosis that had penetrated all the way through my bowel wall and the bleeding was menstrual blood! Referred immediately to an excision specialist who was fantastic but I didn't get in to see til Dec, he referred me to a colorectal surgeon as he decided he wanted me to have a bowel resection and endo pelvic excision clean up within 3 months (I'm a public patient in Australia so probably v. different to UK) and because the medical community is so bloody backwards and still uses snail mail, my referral to the surgeon got lost in the mail.... So cause of Xmas and new years both specialists were closed until mid Jan... I finally have an appointment this Tuesday, 2 months after my initial appointment with my excision specialist... So much for surgery within 3 months!! My big fear is that the colorectal surgeon is going to say "it's not cancer, you can wait the usual 12 month public waiting time"... Don't get me wrong, I'm glad it's not cancer but far out I am SO over waiting. Quality of life is crap right now!!!

Like pinktige, this is a very long and rambling message to say you really need to be your own advocate. And make sure you are referred to an excision specialist. A standard gynaecologist is not going to cut it with endometriosis!!!

[Rbdcrlm in reply to Rbdcrlm]

BTW I have always had symptoms of endo since I was 15 (now 28), when I first spoke to gp at 15 she did the usual and chucked me on the pill. I had surgery Feb 2018 for 2 ovarian cysts removal and asked my gynaecologist to check to see if she could find any endo. She said no, my specialist that I have now think she wasn't informed or trained enough to spot the endo. So when I started bleeding rectally a few month later, it never crossed my mind that I had endo because I'd already been given the clear. Please please please pick your Dr who will perform the surgery carefully!!!

And push push push until you get the answers you want. Maybe if I'd pushed at 15 and didn't just get told I was too young for surgery, they would have been able to stop the progress of my eno through my bowel wall and I might not have needed to get part of my bowel removed.