Waiting for any diagnosis. How long did it take for doctors to decide what it was for you?

[Loz98]

I’ve been having horrendous abdo pain for about a month now. The pain has happened before but it’s never floored me quite like this has. I’ve been bed bound, I can practically get from my ground floor room to the kitchen if I try very hard and I’m exhausted when I get there. I’ve been to A&E 4 times in 3 weeks. Sometimes I don’t feel to bad but sometimes it’s like being stabbed from both inside and outside at the same time. Going to uni has become a task and I have to pick fairly empty days to go so I know I can make it through the day. The doctors have been trying to work out what it is I’ve had ultrasounds, blood tests, urine tests and a CT scan. The doctor has recently mentioned endo and he said that in combination with my PCOS he could definitely imagine that this could cause the amount of pain I’m feeling. He therefore decided to start treating it even though it’s nit certain I have it to see if it improves the situation. I know that a laparoscopy is the only way to definitely know whether or not it is endo but every doctor I’ve spoke to since refuses to refer me for one. I appreciate that the NHS might not have the funding for everything but I’m missing out on my life and education and I’m beginning to get really angry about it. Doing uni work at home only gets you so far and the fact that my course is so full on and involves a lot of group work means I’m missing all of that as well or trying to work on it from a distance and it just doesn’t work. How long did it take for you to get diagnosed and how much did everyone seem to do nothing before something finally happened? I’m at my wits end and I’m starting to lose faith that they’ll ever work it out.

[Hidden]

Hi there Loz. I am from Australia and have been suffering with pain/bleeding during sex, frequency/urgency urinating, heavy bloating and irregular bowel patterns for about 2 years. All up, from reporting my first symptoms, which were initially vague, to diagnosis has taken about two years. It has taken a year from my referral to diagnosis, though, as things started getting worse and I couldn't continue to ignore it.

I had seen my GP a few times over several months from about Dec '16 onwards reporting vague symptoms that were slowly getting worse. My abominal and transvaginal ultrasounds, bloods, urine, pelvic exams and swabs all came back normal. The GP could not find the cause of my symptoms so I had a referral arranged in Aug '17 and was booked to see a specialist in Jan '18 which was through my private health insurance.

In the interim I went to the local ED twice with abdominal pain which was suspected appendicitis, but all scans were normal so I was sent home. The pain would subside eventually to a dull ache.

I had my first appt with my specialist, tried some different medications/interventions to cover possible IBS, overactive bladder and UTI's to no success. These includes low dose antibiotics, pH creams and Betmiga for my bladder. My pain is only really associated with intercourse, and I never had painful, heavy periods so the surgeon thought my chances of Endo were minimal!

Saw him again in Aug '18 and after discussing that none of the interventions had worked, he booked me for a Diagnostic Laparoscopy which happened this month, Dec '18. I was diagnosed with severe Stage 4 Endometriosis throughout my abdomen, primarily through my bowels. They also found a heavily dilated Sigmoid Colon. If this had been left it could start to cause serious issues with my bowel and bladder function. I am seeing the surgeon on 30/01/19 to discuss my next operation and have a referral to the Endometriosis Clinic which include fertility, bowel and gynae specialists where I can be managed properly from there.

You really need to push for another opinion if you are being refused a Diagnostic Lap, without it then you cannot be formally diagnosed for Endo or be properly managed, besides it also checks for any other pathologies that could be causing pain. It sounds like this is really interfering with not only your studies, but impacting on your quality of life. I know the NHS is different to our health system here but do not be afraid to push if you aren't getting the answers you need. x

[Loz98 in reply to Hidden]

Hi thank you for this! Because of the increase in symptoms I got a referral for February for the gyne at this point everyone’s convinced. I recently started bloating and my friend who I’ve known since primary school and who goes to this uni saw me the other day and asked if I was pregnant and was reluctant to believe I wasn’t. I’ve been pushing and have had some success but I’m sick of it all now and just want it to go away really. Nothings helping any pains and I just want it all to go away. Thank you for what you said and encouraging me to push it with the doctors it really helped. The only thing I’m more worried about now is if they want to do a diagnostic lap it will have to wait until summer. My studies have become slightly easier and my academic tutor is reassure that I managed to be in uni so far this month. My attendance is still terrible but if I can push through this last few months (until around mid may) I can have the operation and carry on my studies as normal without having to take a year out on medical grounds (which is entirely alright but I quite want it all out of the way). In the lead up to my appointment I have become distressed as we need to do group work a lot on my course and, having got into a group last semester for science and not really being around too much (although these people seem to forget is did do the work they asked 100% of the time especially the things it was easier that i do), people have become reluctant to work with me due to my unreliability. No one particularly believes anything I tell them in regards to what happens when I can’t be there and I heard someone once before I walked into a room say that I never look ill and that they aren’t convinced anything was or is ever wrong. This did really upset me and the realisation that people aren’t going to believe me has set in a bit and short of pouring every painkiller I have to carry around in front of them I don’t know how I’d ‘convince’ them anyway.

Thank you for what you said it has inspired me to push and hopefully I get the answers I need soon. Xxx