Is it endometriosis even though I have ZERO periods???

[Sammibabesx]

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 ....

[emmaquinny]

Hi, I have endo and no periods-due to the mirena coil stopping them. Is that the coil you have? X

[Sammibabesx in reply to emmaquinny]

Yes Emma I have the marina coil in but my periods stopped a good year and a bit before I had this fitted x

[Flynn_Maverick]

Hello sorry to hear you are going through this... Yes I had quite bad endo pains for a couple of years despite no periods. It just gets a lot worse when you start bleeding again. And the endo was definitely there as I had it removed. Hope that helps a little to reassure you you can still have problems with endo despite no periods xx

[Sammibabesx in reply to Flynn_Maverick]

Ah thank you for the reply. I'm kinda hoping I never have a period again if im honest ha. But it just puzzles me how my periods stopped completely before I had the coil fitted etc. I haven't missed them by any stretch of the imagination. But I get horrendous pains once a month for a week or so which I'm guessing would be a period if I had them. I've been on the phone to the doctor this afternoon to follow up a gynecology appointment but they've e said it can take up 16 weeks for an appointment in the post. Great. Xx

[Flynn_Maverick in reply to Sammibabesx]

Good luck, once you get the appointment don’t let them try and tell you it can’t be endo because of not having periods etc xx be strong xx

[Poppy1973]

I have had the coil in for 21 years (5 coils) therefore no periods and still have endometriosis and adenomyosis.

[Sammibabesx in reply to Poppy1973]

Oh man. Thank you! Being a woman really sucks !!!!!! X

[Inonge1]

Hi. I have both endo and adenomysis with no coil but some months experience what you're describing, it's horrendously painful!

Have had it for 36 years but only diagnosed in 2012!

[Sammibabesx in reply to Inonge1]

Thats a long time to wait for a diagnosis 😔😔😔😔 it worries me that it takes that long!! Xxx

[clairereed]

hey i too don't have periods but sti suffer the pains of endometriosis also. as to what your describing with the bladder I too had the same and after years of going back and forth I was eventually referred to urinology gynaecology and diagnosed with painful urethral syndrome. keep pushing x