Endometriosis UK

54,464 members • 43,904 posts

Diagnosis Time

Just wondering if others could share how long it took for their diagnosis? I am 27 and just starting out in this process. Had an ultrasound last week and now awaiting referral to a gynaecologist. I have two children and don't plan on having anymore. I'm in so much pain every month with my 10 day long period as well as inbetween times now and extremely bloated, I look about 5 or 6 months pregnant all the time but have lost my baby weight.

I'm not sure what I have is endometriosis but it's something I suspect. I'm just feeling anxious that I have a long road ahead of me

10 Replies

•

It depends if you have a gynaecologist that understands endometriosis, a lot of them don't. I'd seen 5 different gynaecologists before diagnosing myself and finding an endometriosis specialist.

Thanks for your reply how did you go about finding an endometriosis specialist if you don't mind me asking?

bsge.org.uk/ec-BSGE-accredi...

How many laps. did you have before diagnosis?. I have had one which didn't show anything but a scan showed possible Adenomyosis.

I had a lap for a burst cyst that didn't show the endo (although it must have been present), I know others that have had laps for other gynae stuff and they've not noticed the endo. It seems that if they aren't specifically looking for it they probably don't find it. Also, if it is sticking organs together or to the abdominal wall they are unlikely to find it as they don't want to pull the organs apart (they don't seem to think that the reason they are stuck might be the cause of the problem). They don't usually look in the Pounch of Douglas (below the uterus) either. So if you think you have endo, I would ask to have an MRI, the newer machines can detect it.

It really depends on person, and your doctors.

For me I always knew I had it because every female on my mums side of the family has it. But when my pain became constant and more painful that's when I seemed help. And it took me 2 to 3 months for my diagnosis. Which I know is really short and I am lucky in that respect.

I was lucky I saw a gynaecologist and offered a lap even though they didn't think they would fine anything was classed as elective lap on my discharge note however they found pelvic adhesions and endo x

Hi Louise.My process was quick - all together took few weeks. I've been to see my gp. Explained all symptoms, she referred my quickly to Alex Hospital 1.5-2 months I had my laparoscopy with doctor Sinna. She diagnosed me with severe endometriosis. Than next step was much longer. Took few months (7-8). I'm recovering now from my second laparoscopy which was done last week in Worcester Hospital. I can highly recommend Dr. Angus Thomson. If you have more questions email me. Take care Hun X

Hi it sounds like you are nearby to me, my local hospital is also the Alex. Hope you're feeling ok and your recovery is going well!

I saw my GP last week to discuss the results of the scan and he said they found a mass which they believe to be a polyp and the endometrial lining was 15mm thick. I am now just waiting for a letter to come through for my first gynae appointment. Not sure what to expect at all, I don't know if this means I do/don't have endometriosis. Having read about polyps I'm not sure that could be causing all of my symptoms, mainly the severe pain.

Sorry for rambling on! Hope to speak to you soon

That's right, it looks like you live just one mile from me

The thickness of endometrium could mean you have adenomyosis ( endometriosis) but I'm not sure. The most important is that you going to see specialist and you are starting the whole process...shouldn't take long. Probably after appointment with gyne you'll get letter to go for laparoscopy- which is the best diagnostic option. Or they may give you also mri to diagnose. Hope it wouldn't take to long. Fingers crossed

I'm recovering pretty well now, Thank you. I had infection week after surgery but my doctor gave me antibiotics and I'm better now Going todayfor my 3rd Zoladex injection.

Take care Louise X