Fed up!!

[Allie69]

Hi endo suffers , I'm so sick of not enough awareness of this dreadful disease we all suffer, I hve spent all week in agony in bed with painkillers , hot water bottle ,finally y,day went to my GP who sent me straight up 2 A&E thinking it was my appendix , after hrs of poking & prodding & nearly being taken to theatre to remove appendix finally a doc listens & says no defo ur endo playing up after me telling them all my history & same symptoms finally 6hrs ltr up to Gyane ward for more tests ,2 more hrs ltr gynaecologist see,s me & go over all again so does an internal scan & says there,s no endo there (can this b seen by scan) & that the pain is being cause by a "small" cyst on my right ovary where the pain is but hey this doesn't add up as I had surgery in feb & had right ovary removed due to endo so again pammed me off & told me to go back to the drawing board like wtf !!! So peeved off & in agony , has anyone else had probs like this , tnks xx

[hd19]

scince me been the age of 14 they told me i have psco but now their tlling me its endo but my doctor told me theirs no scans that will show it up. i am now 19 and i still havnt had anything done about it am like you am in agony dairly and in hospital a lot with the pain but they wont do anything for me.

[Allie69 in reply to hd19]

Omg poor u , ur only 19 & hve been suffering frm the age of 14 this is a disgrace , I really feel for u I'm now 45 & I just hope to God u get some answers & treatment before u hve to suffer till my age , u just hve to keep gng to GP , hve u ever had a laparoscopy ? X

[hd19 in reply to Allie69]

no i havnt a i have had nothing but pain relife

[Riyan in reply to hd19]

At least the doctor can arrange an MRI test for you. But diagnostic laparoscopy is the confirmatory. I really feel ur condition..I'm hoping best for you.

[Flare]

Endo does not show on scans in some cases. I had an external and transvagnial scan. Neither showed my endometriosis but when I went for a laparoscopy it was found.

Keep persisting with your GP and gyne. Hope you feel better soon x

[Allie69 in reply to Flare]

Tnks Flare for ur reply I thought that myself that lap is the only way to show this up , dnt u just feel fed up with being shoved frm pillar to post & it's a constant battle , hve u had any surgery reg ur endo ? X

[Flare in reply to Allie69]

Laparoscopy is stated on the NHS website the only way to diagnose it 100%.

I do get incredibly fed up with being messed about by docs.

Ive had a lap, hysteroscopy, mirena inserted and now waiting to go in for a colonoscopy. Whilst I'm happy its being dealt with I'm frustrated at the lack of support I'm receiving from gyne.

Perservere, persist and eventually you'll get there. Its taken me 18 months to get referred to gyne and to get my diagnosis.

Big hugs to you Allie x

[Allie69 in reply to Flare]

Tnks again Flare for ur reply , can I just ask after you had ur hysterectomy did this cure your ur endo ? Good luck with ur colonoscopy & yea think ur right that's the only option to keep being persistent , take care xx

[Flare in reply to Allie69]

It wasn't hysterectomy, it was a hysteroscopy.

Apparently hysterectomy doesn't cure endo.

However, my mother had endo. Ended up having a hysterectomy at 38 years old & she still suffers with the symptoms of endo & is under a bowel specialist.

take care too xx

[Riyan]

I understand your feeling..I had my surgery last May and my rt tube has been removed but ovary left there. I am experiencing pain on my rt hip and leg and sometimes rt side of my belly. I went through other endorse later websites and Facebook group where everyone emphasised on good 'Excision' surgery that is cutting off all endometriotic tissue from the body. This required good surgical skill.There said also..if you are not cured from endometriosis after two surgery ..then you need to find out a good special in excision surgeon. But you are not alone ?.many of us went through surgery but could not recover from this tremendous pain.

[Flossie23]

There needs to be more awareness of endometriosis amongst doctors!

I was finally diagnosed this year after I found a doctor who would take me seriously and sent me for a laparoscopy. I've had 4 years of doctors visits, ultrasounds (which can't show endo) and many trips to a&e and each time I was told that it was just bad periods (even with a family history of endo). Once I was even told that it was IBS by an a&e doctor even though I had no other symptoms other than severe pain, now it turns out that my bowel is stuck to my abdominal wall and that was causing the pain.

Thank god for my new GP, now I know what is happening and I'm starting decapeptyl injections next week and things are already looking brighter even though I'm still suffering it helps to have a doctor actually listen and care.

[Allie69]

Thank you all for ur help support & helpful comments , I will continue on my journey & take ur advice & keep being persistent until I finally get answered & treatment , good luck to u all & take care xx

[kayjayne]

I am 100% with you last weekend i saw 4 different people regarding my pain and not one wanted to help! completely fed up pain isnt were my endo pain is and iv been the same in bed tramadol, hot water bottle and 0 sleep! its crap and doctors just want to send you on your way as soon as you say endometriosis

Why should we just have to suffer