Endometriosis

[SCeee]

Hey,

I am feeling desperate and looking for guidance. For the last 3 months, I’ve been in agony with stomach bloating, lower abdominal pain, sharp lower back pain, heavy/clotty periods, nausea + vomiting, and exhaustion. I’m constipated for a few days then have explosive dihorrea the next. TMI but during my cycle my dihorrea is awful and so irratic. Had bloods done in May which showed low folate so thought maybe this was contributing to my symptoms. My period all my life has usually been regular and to the day, but for the last 3 months it’s been completely irregular and out of sync. It’s starting to affect everyday life - all month round. My stomach is so distended for my entire cycle, worsening during my period. I feel so sick, minimal appetite and just so exhausted by all this. The pain in my lower back and stomach is unbearable - sometimes I feel like I’m going to pass out. I’ve also tested my urine on 2 separate occasions which has shown blood in my urine but as per usual - GP’s don’t care. This was done prior to period starting so understand this could have caused traces of bloods.

I took matters into my own hands and booked a private ultrasound which showed nothing. Have had routine bloods done at GP (I’m a nurse, and believe the blood tests they’ve taken aren’t appropriate for my symptoms) which also came back normal. I’ve contact the GP constantly and all the can offer me is a telephone consultation in 3 weeks. I’m at my wits end, I’m in so much pain and feel so miserable - does this sound like endometriosis? Every single month it’s getting worse :( I have a 3 year old too and it’s breaking my heart that I don’t have the energy to be able to give him my all at the moment.

My cousin has histamine intolerance, unfortunately doctors don't seem to be very well informed about it but it's not uncommon from what I understand. She finds a low histamine diet helpful, she also takes vitamin c supplements that she says helps. 💐

Thank you ❤️ that’s what I was thinking. My best friend is a specialist dietitian and thinks I may have SIBO?

That's bacterial overgrowth in the intestines isn't it? I don't know much about it but it sounds possible with the stomach issues you've been having. Did anything change before your symptoms started that could've possibly triggered them? Like an infection or a change in diet or anything else different?

I have SIBO (hydrogen) and I believe my endometriosis is the root cause. It's an absolute bugger to get rid of though. I'm still struggling 3 years after testing positive.

@DianaVilliers yeah that’s the one! Nothing has really changed in my life? It’s busy and manic as I work as a nurse and have a lively 3 year old but no recent infections or stresses that I can think of? 😕 tomorrow morning I’ll contact the GP and ask them to test me for it, and refer me to gastro? No change in diet at all. If anything, this last month I’ve tried to be more mindful when eating to detect triggers but nothings worked :(

@BobButtonsismycat So sorry to hear you’re still struggling with SIBO so long after your diagnosis 😭 did they give you antibiotic treatment? And what sort of diet do you have? Xx

@SCeee Good luck!! 💐

That could be likely since your symptoms were onset three months ago. How old are you? Just normally for something like endo is would be persisting for many years, as it's a progressive disease it gets worse over time and most people are onset in their teens. Not saying it's impossible (as it does happen more rarely) but it's weird that it just started 3 months ago and came with lots of immediate symptoms rather than a slow burn that intensifies and other symptoms as well which you don't have. Perhaps get h.pylori and calprotectin and ocuplt blood and some other batteries tested. Also push tomorrow for the GP to get an endoscopy and a sigmoidoscopy. And everything else that's been covered above - I'd suggest going back through this thread and writing it all down, like on your notes app or something so you don't forget anything and you can just work your way down the list.

Sibo normally comes from issues in the small bowels or a weak immune system. For example some of the causes are:
H.plyori bacteria
Chronic pancreatitis causing lack of digestive enzymes
Celiac
Intestinal damage from something like Crohns or U.C

Mine pretty much did come out of nowhere. I had the usual fairly heavy, and what I thought was normal pain through my period
then they found an endometrioma as an incidental on a scan, and suddenly, bang, pain that made me want to remove my own ovary, awful swelling, uncontrollable pain. On ultrasound they found kissing ovaries and diagnosed from that

when they did the MRI they found deep infiltrating stage 4 endo everywhere with large endometriomas that took a full day in theatre to sort

I went from fairly normal to not at all normal screaming in pain within months

Well that's not out of nowhere. You had symptoms for a while but you ignored them as you thought they were normal (not your fault, I blame the patriarchy), I'm guessing you also had other things going on, but didn't connect the dots and also thought this is what every women has. Also I didn't say it's impossible, just that it's a much smaller amount of women that happens to, most aren't like that and gradually increase over time but actually have been symptomatic since their teens. Some people just are completely wiped out going into late teens/early twenties and disabled, others aren't and it barely bothers them, or they're less severe/symptomatic and it can be easily managed with the pill, low dose NSAIDs and that's it. Others have palliative care doctors and even surgery doesn't help much. It's a disease which affects people differently. The stages also are about the amount of endo/the impact it has on fertility, that's how it was originally designed which tells me a lot about how they think that's the most important thing for a women when being diagnosed, someone with stage 1 or stage 2 can be disabled, have worse symptoms and pain that someone with stage 4. The stages by themselves don't tell you about the life impact of the disease. But I'm glad yours was caught quickly.

Hi guys,

just a quick update. I received my ultrasound report today - despite everything appearing normal, it has mentioned that a large amount of gas was seen in bowel, so inability to scan pancreas was noted.

large amounts of gas seen in bowel can be the cause of bowel inflammatory conditions and food intolerances! Im not going crazy am I?

e consult done and awaiting response.

You're not going crazy 💐. If you did have something like SIBO or another bowel issue that that could create excess gas surely?

@DianaVilliers my thoughts exactly! But I can just see the GP reading the report and seeing everything is normal and dismissing me again 😭

GPs can be pretty unhelpful sometimes, I think you just need to keep pushing if they dismiss you, I know it's not easy though 💐 Fingers crossed for you that you manage to get some answers!

I have tried Rifaximin but it made me worse. My gastro isn't much help as she doesn't really belelive in SIBO, she says the tests are unreliable and I would need to have a significant health issue to have developed this overgrowth, I do....its' called endometriosis!
I follow a low fodmap diet which used to work well but since I have been in perimenopause it's all become so much worse.

I do hope you manange to find some relief from your issues x

It was a pelvic and abdominal one right? That's something a least, you've ruled out a few things and narrowed it down to likely an inflammatory bowel issue. Have you got an appointment booked yet?

@TheLivelyViper yeah it was so definitely inflammatory bowel. I submitted an econsult first thing this morning, got a message back saying ‘it will be dealt with tomorrow morning’ 😫

I’ve also ordered a one step h pylori test kit too! So hopefully that arrives soon!

Make sure you chase them up if they don't get back to you. But I'm guessing they will, they have to triage which makes sense and make it work. Hopefully if the kit shows h.plyori at least you'll be getting a plan in place. Or if it doesn't, I wouldn't object to the GP doing further stool tests of calprotectin etc but also the h.pylori as the home kits are likely to be less accurate.

Oh nice to see updates good luck OP on getting seen and treated, I’m relieved it’s not looking like endometriosis it’s not something I’d wish on anyone.

@TheLivelyViper that’s what I’m thinking. I’ll see what they say tomorrow and inform them that I’ve got a home test. I purchased off Amazon after seeing somebody else on this website and the reviews look good and say they’re pretty much accurate!

@reversegear i think your right - I definitely think it’s siding towards inflammatory bowel! I’m just praying that it is something so that I can start working at it and get fixed 😭 feeling utterly miserable. It’s so ironic - I’ve been a nurse 12 years, 9 of those spent on an endoscopy ward! So colonoscopies, gastroscopes and flex sigi’s are my bread and butter 😅 just wish the GP’s would take people more seriously!! Xx

I'd make sure to push for a colonoscopy and, and then some further stool and blood tests. Then you can go from there. Make sure you have a detailed list of all your symptoms, and the tests and procedures you want to be referred for. Also the medications you're thinking of trying whilst you wait for diagnosis (antiemetics, antispasmodics, anti-motility/anti-diarrhoea meds as well).

Use the Co-codamol you currently have as well when the pain is too much and maybe push for an endoscopy for the acid reflux, vomiting etc. Hopefully once those get back, you'll know exactly what you're working with and cam get a referral to gastrology as well.

Gosh that really is a rapid change isn’t it? I think these ‘out of nowhere’ stories are becoming more common as awareness of endo increases. I had no symptoms with stage 4 DIE either yet I was completely riddled with it.

This is what’s making me nervous. Part of me thinks it’s definitely inflammatory bowel related, other part of me is thinking that it’s endo!

im going to pursue the bowel side of things first to see what they say. I definitely think it’s all linked, as I’m starting to feel like food is ‘stuck’ after every meal?

god female body’s are such a minefield aren’t they? 😭🥹 men are so lucky!! Xx

From MRI to surgery she said it could have been a different patient it had spread so much so fast

@realslimshade how did you symptoms begin? I’m so sorry you went through this!