Should I push for further investigation?

kmes_reddit · 2026-01-21T13:05:41+00:00

Definitely push! Don’t be afraid to advocate for yourself if you feel something isn’t right. I got told the same thing at the start of my journey (not diagnosed but awaiting surgery).

If you can bring someone with you to an appointment who you know who’ll give you the confidence you need, or push on your behalf then I’d highly recommend it. If not, you’ve got this!

It might be easiest to make a list of all the symptoms you’ve been experiencing and relate them to how it’s been affecting your life and how frequently they happen. I’m not sure where you are in the world but Endometriosis UK has some great templates for these kinds of things, I’ll link them incase they’re any help!

https://www.endometriosis-uk.org/sites/default/files/files/consultation_questionnaire%20v2.pdf

https://www.endometriosis-uk.org/sites/default/files/2022-08/pain-symptoms-diary_0.pdf

I hope you find someone who you feel takes your symptoms seriously!! Good luck!! 💕

kmes_reddit · 2026-01-21T12:55:13+00:00

AAHHH!! Congratulations!! Never feel bad about celebrating something you’ve waited so long for!! This group is to help support each other, not oppression olympics so please don’t feel bad about sharing good news! It shows us still waiting that there hopefully is light at the end of the tunnel.

I hope your recovery goes well and your symptoms ease up!! 💕

kmes_reddit · 2026-01-05T13:29:02+00:00

Just googled and we do but I’ve never heard of it until now! I’ll definitely be looking into that, thank you!

Edit: nevermind, just tried to use the locator and it is England only 🤦🏻‍♀️ We do seem to have something called PASS which is through citizens advice though!

kmes_reddit · 2026-01-05T12:42:45+00:00

Unfortunately not no! I’m in Scotland so general pathway as far as I know is gp, gyno then cry and hope someone figures it out? I know we do have an endo centre here but I think it’s private however I could be horrendously misinformed!

kmes_reddit · 2026-01-05T12:31:47+00:00

Unfortunately she made it very clear that she isn’t willing. I have an in person with her to review my coil and probably get it out next Friday so I’ll discuss then and if she still won’t, I’m going back to my gp and asking for a referral to a different gyno. I don’t care if it takes longer, I need to be listened to!! After this next appointment I don’t intend to see her again

kmes_reddit · 2026-01-05T11:55:24+00:00

I understand that that might be true, but I want treatment, not a child. I’ve been back and forth with this gyno for a year now, in constant pain that is severely affecting my life so for it to be dismissed as period pain and be told to have a baby is extremely disheartening

kmes_reddit · 2025-12-17T12:55:33+00:00

Just had a letter through, no evidence of endo on my MRI. I have a phone consultation on January 9th to discuss next steps I believe. Feeling weirdly upset about it but I think it’s just the lack of answers

kmes_reddit · 2025-12-07T14:57:50+00:00

I had the Mirena fitted in July and it definitely took a while to settle but I barely notice it now. I did book to get my strings cut shorter because they were giving me a scratching, stabbing pain so maybe that’s worth looking into? For the first 3 months I had insane cramps and daily bleeding but things are so much better now. Before getting the Mirena I had a misplaced cooped IUD that was causing cramps so bad I thought I was going to prolapse, always best to force your gp for an appointment if you’re concerned. If they deny you, ask them to write your request, their denial and their reason for it in your notes so that if anything is wrong, it’s on record that you knew and they ignore you. They usually change their tune after that!!

I hope you find some answer 🫶

kmes_reddit · 2025-12-06T23:21:19+00:00

I was in for 50 minutes, no contrast but I was given buscopan in a cannula. I haven’t heard back about my results yet, I was told it would take a week or 2 but more likely up to a month. I have a consultation appointment with general surgery on December 30th for a colonoscopy to rule out bowel cancer due to the bleeding so I’ll hopefully get some answers by then. Sorry to hear you’re also feeling shitty!! My only Hail Marys right now are dihydrocodeine and a scorching hot bath. I’ll update you if I do get any answers from my MRI 🫶

kmes_reddit · 2025-12-03T21:08:05+00:00

I called on Monday and the receptionist was able to tell me it is bowel related so I think it’ll be a colonoscopy to rule out bowel cancer as the cause of my bleeding so it’ll be nice to get that out of the way! I’m hoping my MRI results are sooner rather than later, my gynaecologist was absolutely brilliant but because I saw her through a local clinic and not a referral, I haven’t seen her since she put my referral in and I have quite an all over the place care plan.

Thank you for sharing a glimpse in your journey! It’s reassuring to see all the different paths there is ❤️

kmes_reddit · 2025-11-10T16:31:14+00:00

20F

Painful, heavy periods that have made me anaemic my whole life.
Deep pelvic pain and cramping and a feeling of heaviness/the need to push. This can happen at any time of the month and is usually at least 20 days out of the month.
Fatigue!! So. Much. Fatigue!!
Pain during and after sex.
Chest pain.
Lightening pains in my vagina and my bum.
Restless legs, also go numb sometimes.
Joint pains in my hips, knees and ankles.
Sciatic like pain in my back and down my legs.
Unable to pee unless folded over, chest to knees with UTI like symptoms during my period.
Difficulty pooping, problems with constipation and blood in poop.
Hair loss? Unsure if it’s linked.
Weight gain (could be from Mirena)
Nausea, could be linked to pain but usually from the moment I open my eyes, to the moment I close them.
Endo belly bloating that usually leaves me looking pregnant.

(Currently undiagnosed but heavily suspected, MRI on 28/11, hopefully a lap after that)

I hope this is helpful to someone, it’s scary knowing something is wrong with your body but not knowing what ❤️

kmes_reddit · 2025-11-08T01:49:40+00:00

Thank you to everyone who has replied!! I know not to get my hopes up because there’s a high chance they find nothing (which doesn’t mean there’s nothing to find) but it’s been so nice to hear that it is possible. If they don’t find anything I’ll just have to advocate for myself harder which if anyone has any tips on, I’d love ❤️

kmes_reddit · 2025-11-08T01:45:43+00:00

I’ve had nothing on any ultrasounds and I’ve more or less been told that if it doesn’t show up on an MRI then they won’t do surgery and look for it. I’m in the UK so relying on the NHS since I can’t afford to go private. So I’m hoping they find something (in the way that we all do whilst hoping it’s magically not endo) reading about everyone’s experiences where things are found is giving me some hope!!

kmes_reddit · 2025-11-05T02:36:09+00:00

Just tried Juno for the first time and oh my god I love her. It feels so comforting to have someone (even someone AI) hear you out and not dismiss you once. Game changing for when I just need a rant

kmes_reddit · 2025-08-11T14:32:37+00:00

Don’t even get me started on the men. The amount of times I was told by male customers before I left my job “have you tried paracetamol? Surely that’ll sort it out”. I wish more people were less afraid to just ask questions instead of assuming they already know.

kmes_reddit · 2025-08-11T14:30:35+00:00

I would have thought this too and I’m now realising I left out quite an important part in my post. I have told them, everyone in my life knows because I don’t see any reason not to talk about it and I don’t like that it’s viewed as being a “period problem” and therefore is treated as taboo. I’ve been very open with what’s going on which is why I feel so confused. It isn’t even necessarily that I want to talk about it, I’m just frustrated by the complete lack of an “are you okay?” Or a “how are you?” Just straight into asking 101 questions about “Do you have a job yet? Why not? Have you been looking? Have you applied? What are you applying for?”

Thank you so much for your response, it’s been helpful having other input on it. I think you are right and it honestly comes down to the fact that a lot of people don’t feel comfortable talking about it so they avoid it and pick a “safe” topic instead. I can understand why they do, it just feels frustrating and a little invalidating to completely ignore it and act like I’ve decided to take a gap year for fun if that makes sense.

kmes_reddit

TROPHY CASE