undiagnosed

[Shadaelle]

Hi everyone! I was never diagnosed with endometriosis, though I always had heavy and painful periods, irregular cycle, and after two miscarriages my bowel movement during period was so painful I was screaming (like a knife in butt). I just became used to it, few Ibuprofen pills usually help through period. But recently sex became a bit painful. Do you think I should insist on being diagnosed and having a laporoscopy or possible complications are just not worth it?

[Emmaja_ne]

Hi I’m currently going through this (especially the painful bowel movements bit!) my gp is finally sending me to gynaecology and also to see the colorectal team. I’ve been going back/ forward for 3 years! I’d definitely push for a referral, it’s not fair having to be in pain every month

[Shadaelle in reply to Emmaja_ne]

3 years!.. Do you think your diagnosis will make a change in your condition? Because, you know, for me I could tolerate it, it's not that bad to the point I would agree for an operation that can actually make things worse...

[Dee_EndoUK Moderator Endometriosis UK]

Hi Shadaelle

Any new symptom is well worth getting checked out - it sounds likely that this is related to all the other issues you've been experiencing (possibly endometriosis) but this may not be the case. In the first instance make an appointment with your GP and discuss all of your symptoms and go from there. We have a really useful resource on our website that is well worth a read before your appointment. This can be found at endometriosis-org.uk/visiti... - scroll down on the page and click on the link 'Getting Diagnosed'.

Wishing you all the best x

[Lindle]

When considering surgery it is always a balance of quality of life now compared with surgical risk. But without a diagnosis you risk the disease progressing and making any ultimate surgery more complex. It is always best to know what you are dealing with so as to be able to make an informed choice.

The first thing is to check out the NICE guidelines which gives a list of symptoms that should suggest endo but it isn't especially detailed. You need one of the following:

chronic pelvic pain

period-related pain (dysmenorrhoea) affecting daily activities and quality of life

deep pain during or after sexual intercourse

period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements

period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine

infertility in association with 1 or more of the above.

You already have three of these. Significant omissions are lower back pain which is common and often associated with leg pain (most often the left) and fatigue. Shooting pain up the vagina and/or butt and sometimes a feeling like sitting on a thorn suggest potential deep disease.

Be aware that the diagnostic lap is no longer the gold standard and a scan should be done first. But a problem we have is that scans are usually done by basic sonographers who only look at the uterus and ovaries and will often come back clear even when deep endo is present - it needs advanced skills to look for that. It is important that a scan checks for what is called the 'sliding sign' to see if the uterus and bowel side freely against each other or whether they are stuck together which would indicate rectovaginal endo involving the bowel.

Given the long delays if you have the funds (£200 - 300) you might consider a private advanced scan.

[Shadaelle in reply to Lindle]

Could you please recommend a clinic in London that can perform that specific scan?

[Lindle in reply to Shadaelle]

Yes link below. It is internationally renowned for it's expertise in detecting deep endo lead by Davor Jurkovic.

Moderators - this is an ultrasound centre supported by the endo centres so can you allow please.

ultragyn.co.uk/about-us/cli...

[Shadaelle in reply to Lindle]

Thank you kindly, I'll look into this.

[Starfish123]

Definitely get a referral, I didn’t and mine wasn’t found until I had surgery for what they thought was possible ovarian cancer. It wasn’t, it was endo. I had tried years before to get it investigated but was told I was mistaken regarding bleeding from the rectum during periods. I knew it happened. I suffered for years, don’t do the same.

[Shadaelle in reply to Starfish123]

Did anything change for you after the treatment?

[BloomingMarvellous]

I suppose my question would be what are the advantages of not being diagnosed? Truly not many from where I am understanding and how much of one’s time ends up fence sitting and wondering if you’re not . A diagnosis gives you power in decision making and choices about how you want to tackle the problem. If you don’t have a diagnosis you can spend a lifetime of managing madness. I spent 44 years not knowing but suffering ( and yes much time trying to find out ) not from avoiding diagnosis but medical blindness. From where I stand today knowing has enabled me to make choices and has relieved the anxiety of not knowing . It’s still a bun fight but for the most part it’s a healthier mental place to be and has been a great enabler. Advice - do your research get the best medics on the case, believe in yourself and don’t put up with brush offs.If in the end it’s not you’ll at least know and can work towards an appropriate other answer.

[Shadaelle in reply to BloomingMarvellous]

Maybe it's just me but I find the battle for medical attention extremely difficult and frustrating. Other health issues that are really affecting my day to day life were neglected and I couldn't do much about it. Years upon years begging doctors to take your symptoms seriously is an awful place to be mentally. Especially when all it takes for me now to manage symptoms is some Ibuprofen... Also as far as I know only physical solution for endo is an operation which potentially may cause even worse endo inflammation. That's why I'm asking women who experienced the same, was it worth it. Especially women who like me didn't have it very difficult before treatment.

[BloomingMarvellous]

It’s so hard and overwhelming and utterly get where you are. The weight of trying to get the diagnosis amidst the pain is a battle in itself. It’s why now I simply won’t tolerate anyone but the most qualified, understanding and skilled to be part of a team. Simply don’t have the tolerance to manage anything less - and neither should you. Frankly the lack of proper joined up care is a nightmare xxx