Endometriosis WITHOUT periods...or something else?

[Skookiemomster91]

Okay please bare with me here...
I have suffered with aches and pains in my pelvic area for about 3 years now.
2016, I ballooned weight wise and my periods stopped, I went to the doctors to check my hormones in case it was PCOS and everything was fine so no more was done. Also in 2016 I had my first abnormal smear at 25. Severe changes, CIN 3 grade changes and had a loop procedure and biopsy done. I tested positive for HPV.
Anyway... I've struggled with niggling pains since 2016. Probably longer than that but after my smear I realised that my symptoms were mostly related to the cervical changes. Anyway, I still have bother with these pains again and the pains I get are not only in my pelvic area but in my lower back as well (similar to when I had cervical changes). In 2017 I got the coil fitted as choice of contraception. Had no bother with it other than my regular pains. But lately the pains have been really really really severe. Sex hurts a lot. More so in certain positions. When I need a wee there's a lot of pressure and pain in my bladder area and once I've had a wee it feels like a huge relief. Once a month for about a week I've started getting period like symptoms (but NO periods!) And I am CRIPPLED in pain. It really steps up a notch. So I'm guessing if I was to have a period that would be when.

Anyway...I went to the doctors in November 2018 thinking my coil had moved because of the pain I was in, they sent me for a ultrasound and the guy said it was fine, the coil was in the correct place and that was that. So I went home still none the wiser.

Fast forward to today, after two more months in pain I decided to go back to the GP after reading my notes online (I can view them due to surgery policies) and I noticed it said my uturus had a heterogeneous echotexture which I googled and saw there was two main causes. So when I went to the doctors today and she examined me and asked about symptoms she said it sounded a lot like endometriosis and she has referred me to gynecology.

But I'm wondering if it can be endometriosis despite me not having periods AT ALL in three years???? Or will it be something else? Because from all I can see online is it talking about heavy bleeding etc but I have ZERO bleeding. Is anyone else like this!? It's really getting me down being in pain all the time with no answers. Im 27 years old if that makes any difference .....

Similar story
41 years old but without the coil. Haven't had a period in I'd say a year and a half. Same crippling back pain. Enough to require paracetamol and nurofen and still feel it.
I ring to try to get an appointment when I'm in severe pain. Can't. Had phone consultation and she wants me to go in.

Will I go? Will I fuck.
I'm supposed to have bloods done. Did I? Did I hell
2 appointments for scans. Did I go? What do you think given the way this is going?
I suffer from depression, just before all the all assholes up in here start telling me about wasting time. I could get there if I could afford a taxi there and back but I just ain't got that kind of money. UC innit.

That said, all of what is happening to you, a GP even, is not going to be able to answer. So you need to go to that gynae appointment.

Donmesswime I will be going to the gyne appointment, just have to wait for it coming through the post. I think I'm just looking for somebody with no periods who has had the diagnosis of endometriosis so I know where I stand I guess. Hate not knowing. After being fobbed off for ages and final with the ball rolling I just wanna know for definite what it is. I'm a little bit worried that my precancerous cells might be back as this is how I felt last time but the doctor didn't seem concerned about that today!!

Hey no judgement here, depression is the worst!! Just getting out of bed most days can be a struggle so hang on in there x

Heterogenous to me translates as 'a different type'
Echotexture would mean texture from an echogram/ultrasound?

I'm not good with latin or anything medical.

So, I'd translate it as a dodgy texture internally. WTF that means, who the hell knows. Go to the appointment.

I know you want to know now! But it's the NHS. It's always a bit slow.

I've thought of better English words to describe what it means.

A non-uniform lining found during ultrasound.

That make sense?

I don't actually know what endometriosis is, so I'm just bumping your post I guess.

I'm just impatient :) know how slow the NHS can be , I'm just sick of living in pain when pain relief doesn't even touch the sides. To be fair though, I probably should have pushed harder for more to have been done before now but when they first told me my hormones were fine with no further suggestions I just left it at that. Yeah I think you're right about the texture being dodgy haha. Guess we will just have to wait and see what the outcome is. My friend has just a hysterectomy for adenomyosis or something which is like endometriosis I think and I don't want her to think I'm copying her as petty as that sounds but I do think we're going down the same route lol

Deep pain during sex can also be highly suggestive of endometriosis being present.

My periods were pretty much non existent due to PCOS and I was eventually diagnosed with endometriosis too (my periods when they did deign to arrive were extremely painful). Any pain too that is cyclical in nature ought to be checked out properly by a gynae to see if endometriosis is present.

I hope you get your appointment soon, in the meantime do keep a pain and symptom diary particularly if you do not already do this.

How are you today?

Atilliathemeerkat....see about three years ago when my periods first stopped and my skin erupted and my weight ballooned they blood tested me for PCOS hormones or whatever it is they do but they came back normal and they just left it at that. Never bothered to investigate further or find out why my periods stopped and whatever else. Just were like "yeah that sometimes happens when you put on weight" but when I say I put on weight....I ballooned very rapidly. I was never a big girl. But I am now. I shot up from a size 12/14 to a 18/20 in a short space of time but they weren't interested. So like fast forward three years to today and I'm still big, struggling massively to lose weight, skin is a mess, and now I'm always in pain with still zero periods. It's a joke. But now it's just a waiting game for the gyne appointment to come through the door.

I'm okay thanks donmesswime ! Just the usual stabbing pain in my womb but nothing new! Hope you're well XX