Endo pain developing in late 30s - anyone else similar?

[purplegrapea]

Currently waiting on a gynae referral to the hospital, but my GP thinks I have endometriosis. Looking at my scan, they also think my ovaries are adhered to my uterus.

However, until two years ago (I'm 38), I'd not had any pain or major symptoms. I don't take the pill, and have always had very heavy periods for a couple of days with some embarrassing accidents, but I just figured that's 'how my periods are'. There were only light cramps.

I've since discovered it runs in the family with my sister, and likely my grandmother all living with it.

Has anyone else experienced symptoms becoming noticeable only when they're much older? I don't see much literature to this effect, and the only 'bonus' is that after periods for 25 years I flipping well know the pain I'm experiencing is not 'normal'!

[Hidden]

I was diagnosed at 43, deep infiltrating endo on bowel, turns out I've prob had it for years 🤔

[purplegrapea in reply to Hidden]

Wow. Sounds likely. Have you had it removed?

[Hidden in reply to purplegrapea]

No not yet, I'm waiting for surgery at specialist centre, hopefully will be in next couple of months. Will be interesting to see what else they find as am told it is very unlikely to be solely in my bowel and not anywhere else. I guess I am one of the lucky ones in that I haven't suffered years of debilitating pain like many women do (only what i considered normal period pain) but unfortunately it has only presented itself now with severe GI symtoms and due to being so advanced that I am looking at a bowel resection 😏

[purplegrapea in reply to Hidden]

After meeting some of the women younger than me at my local Endo UK support group I agree that I do feel a bit of relief that the pains have only started recently. I wonder if I would've been taken seriously by the Drs if I was younger?

I hope that your surgery is very soon, when you say GI do you mean gluten?

[Hidden]

Sorry GI - gastrointestinal/bowel. Sadly it would seem many women are fobbed off for many years, told that their pain is normal, given the contraceptive pill which just masks the disease, or told they have IBS, or just made to feel like they are plain crazy, then end up with severe disease, fertility problems etc etc later down the line. I hope your referall is not too long a wait too. Good luck 😊

[purplegrapea in reply to Hidden]

Thank you, you too. 🙂

[Char411]

I’m currently in the process of being diagnosed and I’m 39. I too thought my periods were ‘normal’ I have also thought the past 18 months whilst going through the diagnosis phase that surely I’m too old to develop it now.

Good luck with everything x

[purplegrapea in reply to Char411]

Thanks I feel the same a out being too old for it to come on. Sometimes wonder if it's my fault somehow... Have I done something to mess with my body?

[Maya23]

I’m 45 and only now going through diagnosis stage (it’s not diagnosed yet, just suspected) and I’m being sent for a laporoscopy. I’ve always had heavy painful periods but it’s got worse lately and with more pain & bleeding between periods. I’m interested to hear that others don’t necessarily get symptoms until later on.

[purplegrapea in reply to Maya23]

I hope they find some answers for you. X

[strboros in reply to Maya23]

They suspect (one theory) it's to do with estrogen becoming more dominant over progesterone. Which naturally happens anyway as we grow older beyond 40 so I guess if someone was already prone, it will likely come out. :/

[purplegrapea in reply to strboros]

I could well believe it!

[strboros]

I just turned 34 and they found the first cyst on right ovary in last July. It took me some good fight o get GP to refer me to an endo clinic, but the first available appointment was this Jan when I was due to be out of the country for a few months. My pain got really bad about a year ago, but ever since I had periods I was in lots of pain for a day or two and heavy too. They gave me the pill as soon as I turned 18 and that sorted it (back then there wasn't a diagnosis for it, but caused me anaemia). Apparently, it can go on for years and years without causing major symptoms and even when it does it's hard to diagnose until large adhesions or chocolate cysts show up on ultrasound. Speedy recovery!

[purplegrapea in reply to strboros]

I wish the NHS was self-referral for some services. When I went to my GP for a referral I was adamant I wasn't leaving without one. I was already livid that their priorities in my previous appointments was NOT helping to manage my pain, but instead did I want a baby? (no) and insisting I try a Mirena and that my 'boyfriend wouldn't even notice the thread' during sex. Forget the flipping man and babies (although he is truly awesome and I'd be lost without him)... what about ME and my agonising pain every other fortnight?!