Suspected Endometriosis?

[xximilixx]

Hello, this is my first post here and I guess I just wanted a place to write everything down, to make sense to myself, and to get reassurance from others.

I’ve never really had the best periods, at school I would almost always have to have the first day of it off, because it was unbearable. I just assumed this was normal, and that everyone else went through this too. As I got older they seemed to sort themselves out, either that or I just got used to it. Fast forward to now, I’m 20 years old and at uni, and the past year or so, I’ve become worried. More than a year ago I decided to get the contraceptive injection, all my friends advertised it as being easy, not having to think about it, and having no periods. From the start, for a good 8 months or so, I was pretty much on my period all the time, which was incredibly upsetting.

I went back to the doctors, they stopped the injections, and I went onto the mini-pill. For a while things were okay, or at least better than they had been, with the bleeding every month, all month. But now, If my periods do stop, it’s only for a few days, and then it starts again. I just figured that the injection had really messed my cycles up and that I needed a while to get it out of my system, but it’s been over a year. The clots are huge, I’m in so much abdominal pain, and sex does hurt, or even triggers more bleeding. I went to the doctors a few times, but they didn’t seem as concerned as I did about any of this. At this time I also went for abdominal pain around my belly button which seemed separate to period pains, I was quickly told it was just a stomach ulcer, and ushered away with some tablets for it.

But things have been getting worse, and I don’t know if they’re all related. I’ve been having such severe migraines, at least one a week which stop me from going to university, and I just have to sleep them off, sometimes it even gets to the point where I faint. At this point, although everyone around me has told me to stop googling my symptoms, I jumped on the internet and have watched so many videos of other endo sufferers and sat through almost everyone going ‘this is me’. This also happened to be the same time that my pain is getting worse, not even the regular period pains I get, running across a room to grab something yesterday I felt a shooting hot pain up my left side.

I went back to the doctors this week, and although getting told it was probably nothing before, after telling him I had been bleeding for months, he’s booked me in for some tests next week, which, only being 20, I’m terrified about. He hasn’t really explained what will be happening, besides blood tests, a scan, and a swab, although I’m not sure what they’re going to be swabbing, I’m assuming the worst. This wasn’t ever something I anticipated happening until 25+, but I just want to know what It is.

I do have this sinking feeling that it’s Endometriosis, but everywhere I read says it says a long time to be diagnosed, or even getting mis-diagnosed. I’m just so tired, and weak, I feel like it’s ruining my relationships because I just want to sleep all the time, I’m just hoping for answers next week, but wanted to know from others who suffer from this, whether what I’m going through sounds like endo to you, and what to expect from here on.

[Annie897]

Hi imee

I can totally relate to how you are feeling at the moment and how difficult it is to stay positive when no one seems to be listening or taking it as seriously as you! Its great that your GP is finally sending you for some tests dont worry about your swabs there not that bad at all and only take a few minutes. Most peoples tests all come back ok as endometriosis can only be confirmed via laparoscopy. I hope all goes well for you with the GP and if all your tests come back clear make sure you keep going back dont just leave it at that. You need to be persistant with them to get a referral to a gyne who will understand much more about what you are experiencing. If you ever need any support or just a chat were all here take care.

Annie xx

[xximilixx in reply to Annie897]

Thank you for replying It's a stupid question, but one that my male doctor swerved answering, when he said I was getting swabs, i asked 'what swabs' but I'm just assuming they'll be internal right? More scared about that than having an injection to be honest... It's annoying because he was more keen to talk about testing for chlamydia, which is highly unlikely that I would have, than he did talking about endometriosis at all so I've just gone and done my own research, and happened upon this website

[Nemofudge]

Hey,

Believe me, we know your pain! Im 21, and I've only just had it confirmed after over a year of tests. Try not be to be disheartened if the tests come back clear, they didn't confirm my endo until I have a laparoscopy. I know how terrifying it all sounds. Be prepared to be asked if you're pregnant/have an STI at every test/examination 😂

If it's at all like mine, the swab will be where you think it would be.. it's incredible uncomfortable, especially for someone with anxiety, but if it's one of the steps towards diagnosis then I promise you, have a long shower after and you'll feel much better. Same with the scan. Mine was an internal ultrasound, but luckily my nurse was lovely, and even though endo doesn't show up on scans, at least it will rule out you having any ulcers or anything.

I didn't expect it so young as well, and it took me a while to grasp the actual consequences of having it, but you won't be alone. Always free for a chat😊 I really hope you start getting some answers.

[xximilixx in reply to Nemofudge]

Anxiety is probably my next biggest problem besides all this, I struggle just talking to people in a shop, let alone having some nurse I've never met doing all that down there. It's the fact that the doctor didn't even clarify what was going to happen on friday, with anxiety I need things laid out for me in advance, so I can worry about it then come to terms with it, but I wasn't expecting to get anything close to a smear test until at least 25.

Can I ask how the swabs work? As TMI as it is, i feel like I have to go to the internet for this because my doctor hasn't told me, and it's whats freaking me out the most right now, not knowing whether its similar to what I've heard smear tests to be like.

And oh god, I just assumed the scan would be a general ultrasound like when you're pregnant, not expecting it to be like that. As stupid as it sounds I'd rather have surgery than any of this, at least I would be unconcious for it.

[Joely21]

Hey

So sorry to hear your suffering and struggling.

I can totally relate to how your feeling, it's a step in the right direction that your GP is sending you for some tests.

I am also an anxious person but I just try and tell myself that hopefully things will give me the answers I'm looking for.

As someone else stated if is is endo the only way it can be confirmed is via laparoscopy.

If you receive clear tests just keep going back and persisting - my nurse practitioner actually told me and she's right 'The people that shout the loudest get heard the most' I find this hard as I usually sit back and wait but after waiting 13 years to be diagnosed and now at 25 suffering daily I have learnt I too sometimes need to persist to be heard.

Take care rest up and I really hope you get some answers soon.

Everyone is lovely on this forum feel free to message if you need to.

Joely x

[xximilixx in reply to Joely21]

Wow 13 years is a long time, bless you! I feel like I may have had symptoms ever since I started my periods at 13, but they just don't teach you about this kind of thing in school, I've only just been made aware of what Endometriosis is through my own research.

[Joely21 in reply to xximilixx]

It's usually the way starting periods early with bad symptoms which at that age we have no clue what's happening! I know it's so hard this forum is good so is endometriosis website - unfortunately it's incredibly common but doesn't get the 'coverage/support' like some illnesses do x

[Hidden]

You are me! You're not alone. There's so many different strains of endometriasis. It took me 7 years to get a diagnoses. I had my first camera and ultra sound at 14. They told me it was IBS. I cried for days because I was there for my periods not for anything else. Eventually I gave up. I suffered. I avoided school. I got hooked on tramadol. I ruined my health. And then i started trying different contraceptives to see what helped. And since August I am on a miracle pill (so far). I take folic acid to help too as the blood loss ruins me and the doctor said I had folic anemia. I have changed my diet as being less bloated really does ease the pain. And I found that the cause of pain/bleeding during sex was a pertrusion on my cervix which was being knocked and I am getting that lazered soon. Further scans have shown I have Adenomyosis in my myetreum(forgive my spelling) and they suspect further endo [I'm on the waiting list for more tests]

Everyone here will tell you it's a battle to be diagnosed and battle to be treated - but I count myself lucky as there are girls who struggle much worse than me. And i feel for them. I feel for you. Just know regardless of how significant someone's endo is - everyone on these forums are so kind hearted and will support you!

[xximilixx in reply to Hidden]

I originally thought I had IBS, as my stomach always hurts and my bowel habits seem to change all the time, right now I'm going through a phase where no matter what I just always have to go but I read that endo can do that to you too. Then I got diagnosed with stomach ulcers which I don't think was accurate.

I feel like I may be anaemic because I've been bleeding for months, have a migraine once a week and keep blacking out but we shall see what the blood test says.

Also I very much feel like the pain during sex feels like something is being knocked, so I wonder if I have a similar thing 🤔

I'm glad I've found this forum before my diagnosis, just so I can fall back on support here should it come soon

[Hidden in reply to xximilixx]

I have bad bowel habits too that change all the time. I don't mind it when I am frequent as I tend to be less bloated. I do still get cramps related to that but they're worse when am bloated and less frequent - swings and round abouts!

You really do sound similar to me. Which may be a good thing. I've been lucky enough to manage my issues with the pill, folic acid/iron tablets and a change in diet. Although my symptoms do get much worse at times and I have to take time off work. I take my pill back to back with a break every 6 months and I can't cope with the break. I use to do one a year but had break through bleeding so now once every 6. And it's the worst week of my life. But it's every 6 months now not every day so I have to be thankful for that.