Anyone ou there 49, been diagnosed with endo but not had any scans or conformation. ? Just been given drugs and fobbed off

[Nikkinix]

Nearly 50

Still having periods

No laparoscopy No conformation

[Moon_maiden]

I don’t know if this helps. Back in October 18, I had really bad pain, went to A&E, period started and they said I had a UTI. I was 50. Last year kept going to GP for UTI symptoms, but only a couple of real ones. November last year a scan revealed fibroids. This was supposed to be a bladder scan. By this time I’d had enough of GP’s as all year none of them considered symptoms to be gynae related, and saw a gynaecologist privately to discuss said fibroids. He diagnosed endo and said fibroids too small. So at 51 had lap to confirm endo, which he treated. Unfortunately he discovered it was deep endo, along with enlarged uterus and numerous fibroids. Now passed to endo specialist on NHS and waiting for hysterectomy.

If you have any questions please ask, if I can help I will.

[Nikkinix in reply to Moon_maiden]

That's sounds exactly the same as mine in the beginning, also have a prolase which causes discomfort not pain as such, with covid I can't get seen by anyone, so frustrating. I can handle the everyday pain but so worried about the damage that might being done,

thanks for the reply

[Moon_maiden in reply to Nikkinix]

Raise it directly (bluntly 🤣) with GP, that you want a referral to a gynae for a lap. There are articles out there, research gate is good.

I so wish I hadn’t left discussing painful periods, etc for so long. This definitely isn’t a condition to ignore. Although I am having other tests (weight loss, can’t eat much) the chances are it’s more endo related.

Hope you don’t mind me asking, how are you coping daily with it? I’m struggling and on amitriptyline and Oramorph when needed.

[Nikkinix in reply to Moon_maiden]

Tbh I'm in daily pain but not as bad as some, just constantly aching around my ovary and lower back into my hips. I mainly stick to stronge ibuprofen and tramadol when need a rest from the pain ,

but given up with doctor

[Moon_maiden in reply to Nikkinix]

I was hoping you had a magic wand

Don't let them use covid as an excuse, I saw GP's back in May at the height of lockdown, and no masks. They really can't use it all the time. It was a great time to get scans, etc. done. Although once the CT Colonoscopy came back clear of cancer, it's been harder to get answers. I think everyone is putting it down to endo/fibroids apart from one consultant. He asked a gastro to contact me, hence the MRI yesterday, although gastro thinks it's gynae related. Huge whinge at GP the other week, so he's doing other stuff. It's way too hard to get answers these days.

Don't give up with GP though, keep nagging. I've found the econsult forms far better, I can write any info I need to down, that way they can't pretend they haven't been told. The surgery is encouraging people to do this so they can triage each person on who needs to respond.

Let us know how you get on

[Lindle]

Unfortunately there is a myth that menopause cures endo and I suspect your doctors will be thinking that you are soon going to be past it anyway if it is endo. Many women may well cease to have symptoms after menopause and I think there will be many women who have endo who never actually knew. But unfortunately women can have a first endo diagnosis after menopause - you don't need to still be having periods to have endo. I was first diagnosed at 51, seven years after hysterectomy and oophorectomy. You don't mention symptoms but presumably you are having them to be here.

So the first indicator is symptoms. The NICE guideline gives a list of symptoms that doctors should be looking for but it is fairly basic and a more detailed description is in chapter 1 of the ESHRE guideline. The NICE guideline also takes you through the treatment process. I would say that at your age you could potentially have had endo developing years without realising it and you need to know before menopause really what you are dealing with if you do have endo. Please feel free to message for more details of the treatment process as we can't give links. x

[Nikkinix in reply to Lindle]

I have joined up with Benenden health will be with them 6 months in November I just hoping a can a least have a lap done to see what happing to me. I have had to give up on my gyno because he's completely oblivious to my daily pain and doesn't seem concerned with my condition ( whatever that it is .?)

Thanks for the reply

[mrskiki]

I was diagnosed in my 50s during an op. I don't know what stage I am, and the endo meant they couldn't finish the op as my insides were badly stuck together. They say it will hopefully sort of fade away now as they did complete a double oophorectomy with some difficulty. So I think yes, the NHS were too busy pre covid to treat or investigate endo especially if you are older, but also when you are younger too and hope age will cure it. I think those that push the question on impact on fertility all the pain and irregular bleeding has, may get a little bit further nowadays, sometimes. My doctor once said to me in response, oh babies are hard work when you're young - I was 30 at the time!