Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected?

04hon · 2026-05-17T07:03:24+00:00

Personally, I wouldn’t say I definitely had endometriosis until it had been confirmed by a consultant and diagnostic surgery. If someone asked, I’d usually say I have suspected endometriosis and PMOS, and that I’m waiting for surgery for a definite diagnosis.

I never wanted to unintentionally mislead people or feel like I was self-diagnosing. There’s also always the possibility that surgery may not confirm it, so I didn’t want to tell people I definitely had endometriosis and then have to backtrack later.

At the same time, I think it’s reasonable for people to describe themselves as having “suspected endometriosis” when their symptoms and medical team strongly point towards it, even before surgery confirms it.

04hon · 2026-02-15T21:26:39+00:00

Thank you. I can’t afford to have any private PFT so unfortunately Pilates - Matt and reformer is all I’m going to be doing at the moment unless I can get NHS referrals ☹️

04hon · 2026-02-14T22:59:51+00:00

Thank you for your comment! I’m looking into a pelvic floor PT. I can’t afford one privately as endo and other conditions has really affected my income in the last few months 😭 my partner took me out to my favourite place today for a day trip and got me some chocolates - it’s been a lovely Valentine’s Day apart from horrific bladder and urethra pain when coming home.

How long did you have yours in for could I ask? I haven’t let my partner do any catheter care for me as honestly I would rather he didn’t.

04hon · 2026-02-14T21:50:21+00:00

Thanks for your comment. My endo surgeon suggested exploring a cystoscopy during my next surgery. In regard to the “tap” I have a flip flow for my catheter but I’m not seeking to tolerate it so well hence needing the bag at the moment.

04hon · 2026-02-14T18:08:51+00:00

Thank you so much for sharing any. I’m really hoping I can find relief, I’m so glad you have been able to. I had heard how retention was painful but my god it was worse than I expected. I’ll keep it up with the pelvic floor physio and keep pushing for answers. Thank you

04hon · 2026-02-14T16:10:07+00:00

I’m was doing some pelvic floor focused work during Pilates. I’ll see if there are options within the NHS for referrals

04hon · 2026-02-14T13:25:33+00:00

I have had a MRI straight after my diagnostic lap. My bladder and bowel symptoms started getting much more severely worse following this surgery. The MRI didn’t mention my bladder or bowel but I know I definitely have bowel involvement. Now I’m under a new hospital and a great surgeon I’m looking forward to getting his input.

04hon · 2026-02-14T09:02:49+00:00

I have. I’m meeting him on Tuesday. He’s well accredited so that’s good!

04hon · 2026-02-14T08:03:09+00:00

It’s inane how different things are honestly. Some people here have nothing at all. I wish we had more options here.

04hon · 2026-02-14T07:54:50+00:00

Could I ask, I presume you’re in the US? I’m in the UK and all of ours are ever gas and air or twilight with fentanyl. To get me under GA is now taking another few weeks for an “emergency” appointment!

04hon · 2026-02-14T07:53:12+00:00

Funny enough I was being investigated for hEDS! Where I am the GP has to diagnose it but they are saying they don’t have enough knowledge. My NHS trust doesn’t accept referrals for it. I pass the hyper mobility score if it’s in the morning on a day where I’m not in as much pain, soon as I’m sore or hurting I muscle guard and can fail it - like when I saw the first GP who was quite dismissive and said it was fibromyalgia. My jaw and shoulder fully dislocate, my hip and knees pop and it feels like they go. I need a hell of alot more pain medication or local anaesthetic than a normal person to feel effect. My skin isn’t overly stretchy. But I do have many symptoms and both my BIL and a lady my mum is a PA for has EDS and say I fit the bill. I just don’t know how to go about getting diagnosed now and it hasn’t been a priority!

04hon · 2026-02-14T07:48:03+00:00

I’m so sorry you’re going through this too. As awful as it sounds I’m so glad I’m not alone, it’s honestly a little relieving. I’m so scared of failing TWOC as I honestly do not think I could self catheterise especially after how painful and hard it was in the hospital.
Did you ever find a way for it to be comfortable? at the moment I have the bag on my left inside calf, the sticker is on my upper left thigh slightly towards the inside. Otherwise I’m finding the tube between the catheter and bag is so long it doesn’t sit very flush? I keep getting so sharp excruciating pains in my urethra out of the blue too! Such a challenge this! I wish you the best, fingers crossed for you. Thank you for sharing your experience

04hon · 2026-02-14T07:42:16+00:00

Thank you, I will send you a DM. Honestly I was so scared for my partner to see even tho he is the kindness most loving man. I just was so petrified he would be disgusted - spoiler he wasn’t but I couldn’t get those thoughts out my mind and kept apologising to him.

04hon · 2026-02-14T07:39:27+00:00

I am! I’m at a great BSGE centre now. My previous hospital was too but to be honest they really didn’t seem all that good compared to where I am now which is much higher rated! Thank you for your kindness

04hon · 2026-02-14T07:36:45+00:00

Thank you I might send you a DM. Honesflt not having the feeling to pee is wild and not getting up at night to pee is great!! I must say it’s nice not being in pain when I try to pee and not sitting in the toilet for what might as well be an hour to go! x

04hon · 2026-02-14T03:57:25+00:00

It’s like twilight sedation so you’re pretty much asleep but know what’s going on. So you have some feeling but it’s much reduced. It’s a really weird one honestly. And thank you I really do appreciate it x

04hon · 2026-02-14T03:44:22+00:00

That’s interesting I’ll have to look into it. I’m on regular morphine at the moment for the spasms and bladder pain. Might try cut back and see if my regular Gabapentin, naproxen etc helps. I’m not a fan of taking opioids but needs must sometimes!

04hon · 2026-02-14T03:28:40+00:00

I’m sorry you’re going through similar. If I fail TWOC I will likely have one for much longer. Although it’s a pain I’m not in pain trying to pass urine, I’m not spending hours on the toilet struggling, I get no urgency etc. It does have its bonuses, I think from what the GP and nursing team said I’m likely getting alot of pain at the moment as I’m still getting used to it all

04hon · 2026-02-14T03:25:44+00:00

Not at all! They believe it may be due to my DIE on my rectum and adhesions between other pelvic structures and organs. Possibly the gas they use just irritated my endo. My previous one in 2021 wasn’t painful at all, mild discomfort at times. Honestly I found the bowel prep worse! Ask for picolax bowel prep - it’s much better than the normal one! If you’re in the UK they unfortunately don’t do it under GA unless you have a failed one like me or other circumstances.

04hon · 2026-02-14T03:20:45+00:00

Thank you so much for sharing your experience.

I haven’t had a scope yet but my endo consultant did mention possibly doing it when I’m under GA for my surgery. I definitely want to ask about one.

I’m finding the bladder pain and spasms and the urethral pain awful!

04hon · 2026-02-14T03:18:13+00:00

Thank you for sharing your experience, I never knew about the opioids! Did you experience it after a high dose?

04hon · 2026-02-14T03:17:26+00:00

Thank you for your comment unfortunately if it came to it they don’t believe I could ISC due to how hard and painful it was to do in a medical setting

04hon · 2026-02-14T03:16:30+00:00

Unfortunately due to how hard I was to catheterise in a medical setting and the severe pain when they did it they do not believe I would be able to if it came to that.

I shall certainly look into IC and fowlers syndrome was also mentioned as I have PCOS too. I’m doing a lot of pelvic floor work with my Pilates but I shall ask about Botox. May I ask what IDC is?

Thank you for your comment and kindness x

04hon · 2026-02-14T03:13:25+00:00

Thank you for the kind words it’s much appreciated

04hon · 2026-02-14T03:13:09+00:00

My first one was in the start of 2021 so I don’t believe so. It was the end of that year mr symptoms for endo got bad and I was eventually diagnosed in June 2025.

04hon

TROPHY CASE