Just a Sunday brain dump!

[Lincoln67]

I don’t know what I’m hoping for here lol I don’t necessarily need advice, a bit of solidarity maybe.

I’ve found comfort reading others posts, which sounds weird as it’s usually about their pain and struggles but something about knowing you aren’t suffering alone, your symptoms are real and your feelings are valid helps.

I’ve been suffering for years - I was put on the pill early on, about 14, for heavy painful periods and it honestly helped massively for years. I was diagnosed with CFS at about 15, but from reading some of these stories, I wonder if the fatigue is more endo related, I guess I’ll never know. I’ve had a couple of bouts in hospital, one ending in an operation for suspected appendicitis. The other I was hospitalised for a week, ending my stay with a gynaecologist telling me ‘sometimes women just get stomach pain and we never really know why’. In my head, these were probably both bad endo episodes.

I’d never read or really heard much about endometriosis. I just assumed I had painful periods and that was normal (ish), I’d pass out, be sick but no one ever seemed worried.

I went to the doctors a few years ago and said I’d had enough, the pill effects my mood, sex drive and I didn’t want it any more but the alternative was the pain and that didn’t feel like an option either. I was SO lucky to see an incredible gp, who instantly said to me she thought I had endo. She also said had I seen any other dr there, is probably be going home with anti depressants and nothing else (crazy but from some of your stories sounds so true). I got further lucky with a referral which landed me at a private hospital in my area, they take a certain amount of nhs patients.

The guy I saw is an endo specialist, he champions research but I still wasn’t convinced. The first thing he asked he was what was my diagnosis? I stumbled and said I wasn’t sure and started listing all the reasons I might not have endo (I fell pregnant easily, I didn’t have any many issues as others I knew etc) and he told me to stop. He told me to trust my gut, I know I had endo and based on what he could see, he thought it was likely too. I sobbed. It’s so overwhelming to be validated after so many years.

He suggested an operation, I wasn’t so keen. We settled on an MRI just to see if we can see anything (he reassured me that just because an mri doesn’t show, it doesn’t mean it’s not there) but I guess im just stuck now.

I’m seeing him again in 2 weeks to review the MRI and my thought process is

1. If it doesn’t show, I’ll try manage different ways.

2. If it does show then it must be bad enough and I’ll accept an operation.

I don’t know which one is the ideal situation and I know sometimes the scan shows nothing but that isn’t what’s truly happening inside. Has anyone had this dilemma? I’m worried about an operation, the recovery and maybe even more so finding nothing and realising my pains forever?

I’m sorry this is such a brain dump. I guess I just needed to get it out.

[Ennob]

I find comfort too in reading through these posts even though alot of them are different from my story. I've had a similar experience with fortunately having a really considerate gynae, I was put on the waiting list for laparsocopy, I'm now on the end of recovering from the surgery with a general surgeon. It was disheartening and may be to hear but I was told that I looked completely clear and healthy and it was unlikely to find anything because I'm young etc etc even though contraceptives did not work that I will just have to trial through them. After an immediate discharge I am feeling very lost but it's true trust your gut so I will be pushing for an MRI and whatever tests and information I can get because I know that at the end of the day something is not right but yeah I have a very similar perspective to you that it's nice to have a bit of a ramble on here with others and but honestly for me I'll go through as many steps as it takes to get an answer.Wishing you all the luck!

[Lincoln67 in reply to Ennob]

I’m really sorry to hear you’ve been put in that position. Did you go to a specialist endo clinic? Is it possible the people doing the operation were not really sure what they were looking for?

It baffles me in one breath but also I’m completely not surprised that something that effects so many women have so little specialists doing ops or scans.

This is exactly what I’m worried about too. I feel in limbo not knowing but also I feel like I’d feel more lost to have an op and not have answers. What are your next steps?

Sending all the positivity! X

[Ennob in reply to Lincoln67]

Unfortunately no, so I can't be certain that it's not endometrosis and i think likely ill have another laparoscopy I'm fairly young and early into the process for a diagnosis so I still consider myself fortunate but 2 sides of a coin. I am glad I had the surgery though, I do wish I'd had an MRI scan before as its may have non-invasely determined I think. But I've tried the most popular and definitive route.

Since I was immediately discharged I am now all the way back to GP, I can't afford private so I will have to get another referral to gynae where I'll try to push for an endometrosis surgeon/consult referral.

And thank you!

[CitizenErased]

I'm sorry to hear about your struggles. I'm in a similar situation. I had my MRI back in August because I wasn't sure I wanted a laparoscopy just for a diagnosis. Turns out that some kind of scan should be done before a laparoscopy now anyway, so that if there is extensive disease, the lap can also treat things as best as possible.

I'm still waiting for my follow-up after the MRI, which seems to show deep endo. I was shocked. Even though I thought I had endo, I wasn't expecting the MRI to show anything, since an MRI only usually shows more severe endo. It's so scary not knowing what will happen next. I'm worried about having to have an op too, so I know how you feel. It's infuriating not knowing what is going to happen to you. And all the waiting around makes it so much worse.

Make sure you write down all the questions you might have whether the scan shows something or not so that you can get all the info you possibly can from your docs. Sounds like you've got a good one at least.

Anyway, please do always post on here to get everything out of your brain! It always makes me feel better. You're not alone. 💜

[Lincoln67 in reply to CitizenErased]

I’m sorry you’re struggling too. That really is the crunch of it though, almost dammed it you do and dammed and if you don’t. I didn’t want a major operation and recovery just to diagnose. I don’t know what I’m hoping for - initially I thought it was simple. MRI doesn’t show endo? I’m fine. MRI does, I’ll do something about it. But I’m hearing more and more that it’s not quite so clear cut which makes everything very confusing.

I hope you come to a decision soon. I thought if it was bad enough to be seen, I’d have the operation as the benefits outweigh the risks but now I’m not sure.

I have a note on phone of all my questions. The dr is going to be like wtf lol!

[CitizenErased in reply to Lincoln67]

That's exactly it – damned either way it seems! Glad you've got some questions ready. I've got tons written down for my follow-up on Monday. Good luck with your appointment! X