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If you have been diagnosed with endometriosis...

29 replies

SlipperyJack · 14/01/2016 15:20

...what were your symptoms, and how long did it take to diagnose?

I should say from the off that I have always had extremely painful periods. So did my mum, and her mum before her. I just figured that was part of life's rich tapestry. I was on hormonal contraception from around age 18 to age 34, which gave me blissful respite from periods. However, I was diagnosed with IBS in my 20s. I haven't been on hormonal contraception since I had my daughter in 2012 - had the copper coil fitted in 2013.

Now, I've been back and forth to my GP for about 18 months. Started with severe fatigue and dizziness; loads of blood tests done, all normal except for female hormones which were a little out of whack, leading my GP to suspect early menopause (I'm 42, was 41 at the time) and possible depression. GP recommended sertraline and seeing how I got on, as she was unwilling to prescribe HRT due to all the adverse side effects...

More bloods done about 12 months later - female hormones now normal Hmm. Fatigue still the main symptom; legs like lead, every step an effort, brain fog etc. GP said she thought it was still early menopause despite the test results, and that she was willing to consider HRT, and that I should go away to think about it.

Due to various life events (new job etc) I didn't go back to the GP for a few weeks. However, last September I ended up in A&E with persistent lower right abdominal pain. Found to not be appendicitis but the A&E doctor told me to "ask my GP about endometriosis" as he'd seen my GP notes and had clocked that the "appendicitis" had started right at the end of my previous period.

Since the A&E visit, I am now getting severe period-type pain both before, during and after my period, rather than just during my period. It focuses particularly on the spot where I had the not-appendicitis, and sometimes extends to my upper leg. It's a burning, grinding kind of pain, not crampy at all. I also get nausea and diarrhoea along with the pain. Painkillers are useless, even those got illicitly from my MIL with prescription-grade codeine in.

GP sent me for an ultrasound to see if there were any cysts or other weird shit - all clear.

I'm due to go back to the GP next Tuesday, after some particularly bad episodes of pain and worsening fatigue. It's beginning to affect my ability to work, look after my children, and generally live a normal life Sad

So, what do you think? Does this chime with any of your experiences? What outcome did you get? Is there anything I should be particularly asking for?

Thanks in advance for your help! (Apologies if my writing style is a bit terse - I'm in pain again...)

OP posts:
maamalady · 29/01/2016 14:00

It sounds like you are quite similar to me, nowwhy - so frustrating when all the non-invasive tests says you're fine, when it's so clearly not the case. I have wondered sometimes if I have mild IBS, though if bowel issues can be connected to endo, maybe it's that instead. Seeing as those issues have also calmed somewhat since pregnancy that would make sense.

Resurfacing from GA was quite funny, I was extremely polite (thank you every other word) but also somewhat leery; I had a male nurse with the loveliest voice, which I insisted on telling him about repeatedly... Blush

Nowwhyareyoucrying · 29/01/2016 15:15

Totally agree about the IBS, I have wondered this but there doesn't seem to be a correlation with my diet so that makes me think it's to do with endo like you said. I guess this is another thing I can ask.

SlipperyJack · 29/01/2016 20:24

nowwhy, just to be clear, I've never had a laparoscopy - my GAs were for an ERPC and for spinal disc surgery. So the recovery from the op itself will of course be different.

But in my humble opinion, DO NOT listen to anyone who had a GA more than approx a decade ago. Modern anaesthetics are a totally different kettle of fish.

OP posts:
SlipperyJack · 09/02/2016 13:33

So I had the gynae appointment today - they swapped the copper IUD for the Mirena (and bugger me but that hurt, and continues to hurt). I got a bit of a pat on the head and "it's to be expected at your age" comment Hmm But at least I can go back after I've given the Mirena "at least four months" to settle down.

Feel like I should have made them listen to me more but I'm not sure how I could have done that. The (female) gynae consultant quite plainly hadn't read any of my notes and didn't ask many questions at all. And after the coil swap I was in so much pain I just wanted to go home.

I am so being reincarnated as a man in the next life!

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