r/endometriosisuk

I’m 22 and currently 67 days since my last period. I’m definitely not pregnant, but I’m getting increasingly frustrated because my periods have been all over the place for the last couple of years. They’ll be regular for a month, then really late, then regular again, then late.
At the moment I’m also having this weird pressure/pressing feeling around my bladder and needing to wee much more frequently than usual. I’ve also previously posted about my bowel movements because they’ve been alternating between constipation and watery/loose stools, and I’ve noticed blood occasionally.
My periods themselves can be extremely painful sometimes the pain is so bad that I actually vomit. I’ve been trying to get answers for this for a while. I’ve had scans and even a laparoscopy, but apparently nothing significant has shown up.
I’m honestly getting really tired of constantly having symptoms but not having an explanation. I know nobody on Reddit can diagnose me, but has anyone had a similar combination of:
Very painful periods / vomiting from the pain
Irregular or very delayed periods
Bladder pressure and frequent urination
Constipation alternating with diarrhoea/watery stools
Occasional blood in stool
Normal scans/laparoscopy
Could this still potentially be something like endometriosis, or are there other things I should be asking my doctor to investigate?
I’d really appreciate hearing from anyone who has gone through something similar, especially if it took a while to get a diagnosis.

How are people actually managing the pain every single day without losing their minds. I got diagnosed with endo two weeks ago after my pelvic symptoms had accelerated rapidly over the course of two months and now i’m in pain everyday. I don’t actually know how people are doing this and carrying on anyway

edit; i’m from the UK so access to ketamine or medical weed is near impossible

WHERE BREATH MEETS BREAKING: A POEM OF CHRONIC TRUTH

When is it okay to say, "I am done"?

When my tears have run dry because I can't cry anymore?

When I feel like a stranger in a room that only has me in it?

When daytime turns into my nightmares and sleep is my only escape?

When my misery becomes a domino effect that makes people roll their eyes?

When I can’t remember what it was like to be someone's happiness?

When my top priority was to never be a “nuisance,”—

That feeling has vanished.

When the pain—the goddamn f’ing pain—is bound to every breath I take?

When my heart has taken one last blow from the thousands of apologies I make that no longer hold any meaning?

When my painful broken body feels excruciating, crippling me as I hang on day by day, hour by hour, minute by minute?

This is who I am now,

And I will forever be shattering the unconditional love that was intended to exist between us.

My soul is lost forever.

Is it okay for me to say, "I am done," at this point?

Or is that not my decision?

Do I have to scream deep inside,

Slowly drown, and suffocate in what I never wanted—for myself or for you—

Until you say,……….."You're done"?

Chronic conditions are something I WOULD gladly wish on my worst enemy!

(Don't judge; you do not know my worst enemy.)

I started having sex 4 years ago. Before that, I did get some pelvic pain and went for two ultrasounds where they found nothing - and because I was young, I never pushed for anything more, and just accepted that women should just be in pain I guess.

When I started having sex, I noticed I needed to pee loads more now, and had some more pelvic pain. My family has history of diabetes, so tbh I was so much more worried about that than anything else. I saw my doctor and he did blood tests for diabetes, found nothing, and did no other tests. He decided I most likely had interstitial cystitis. Again, I didn't push back - I felt like, who am I to argue with my doctor??

I spoke to my mum, who said she had the same condition, so it all seemed to make sense for me.

I went on the pill for contraception, and noticed very little pelvic pain. I still needed to pee loads, but for me, that had already been solved!

Anyway, my partner is away travelling so I decided to take a break from the pill. I've noticed it's been really affecting my mental health, and I just couldn't deal with it anymore. I've felt so much relief mentally off it, it's been great.

However, I've noticed now, I'm peeing even more and the urgency is a lot worse when I only need to pee a tiny drop. And I'm getting pelvic pain like I used to, not debilitating, but noticeable.

I recently listened to a book on women's health through history (unwell women, if you're interested), and it shocked me. For the past couple of years, I have been questioning my diagnosis of interstitial cystitis, but it's so difficult getting anyone to listen. Especially as I didn't have much pelvic pain while I was on the pill (except when I was on my period, then it was awful, but people said that's normal).

So, I did now digging into it, and it shocked me how much my doctor just didn't do. It sounds like the diagnosis he gave me is one to be given after extensive testing for other disorders, such as endo. But he just didn't do it.

Now, I don't know if I should even bother getting checked out for endo. I don't know, maybe I do just have interstitial cystitis. And I've seen online, there's nothing they can really do for endo anyway.

I don't know, with the waiting lists as they are and the pain of trying to convince my doctor I need to be referred, I'm just not sure. It's just so disheartening to have healthcare as it is for women. I mean, I was looking at other possible contraception, and I'd like preferably non-hormonal, but the only option there is the copper IUD, and that could make my pelvic pain worse 🤦‍♀️ I've spoken to my boyfriend and he's happy to just use a condom, but it's just so frustrating.

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I’m booked in for surgery on Tuesday and I’m absolutely terrified I honestly feel like ringing up and cancelling. I live in the UK and seen my consultant privately where she performed an internal scan and said I have a cyst and my ovaries are polycystic so she wanted to do surgery to check for endo. She then moved me to her NHS list for surgery as I don’t have insurance so I’ve only met her once. I just feel so scared about everything. She also wants to put the coil in during surgery but I am unsure. I’m hoping she will be able to remove the cyst as it’s why I felt something was wrong in the first place. But what if she doesn’t? I don’t want to end up living with pain everyday.

Sorry for just ranting I just feel so lonely and worried.

Hello, has anyone else had pelvic adhesions and a lesion and pathology comes back at scar tissue(fibrous tissue)? I was given no answers after my laparoscopic surgery. What else could cause these adhesions and scar tissue? Is it normal to just grow scar tissue?

They found an adhesion on my sigmoid colon to my L left wall. As well as a lesion on my uterosacral ligament.
- No prior surgeries/infections.
- Was basically told they don’t know what it is for what caused these, they probably won’t grow back, and that it’s not endometriosis based off pathology.

My surgery was done by a robotic specialist who has removed endometriosis many times.
I had a second opinion at an office who was described as a specialist, they said the same thing.

Not sure what to think or where to go from there. I have my pelvic floor therapy appointment tomorrow, and a 3MO follow up. Probably not even gonna go to that tbh! Feeling defeated and confused. Surgeon went in VERY convinced he would find endometriosis based off my health history, family history of endometriosis, and symptoms.