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Endometriosis

79 replies

SCeee · 23/08/2025 17:30

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.

OP posts:
TheLivelyViper · 23/08/2025 18:07

Abuye · 23/08/2025 18:01

You can have stage four, deep infiltrating endometriosis and be asymptomatic.

Endo rarely shows on ultrasound; you need an MRI, or, ideally, an explorative laparoscopy.

Well yes you can but if you're asymptomatic then you don't really need as much interventions - because it's not impacting your life and thus you won't be considered disabled or at the very least affected. Unless you want to have kids, it may be affecting fertility (which would be a symptoms). My point is it's only been 3 months and before that fine, normally it doesn't just come out of nowhere but slowly emerges over time and symptoms worsen. That hasn't happened in OP's case. The endo can still be removed but that could worsen it after with adhesions and scar tissue. Often they decide not to do anything unless you start having symptoms. Plus then if its deep they may not want to remove everything unless she's willing to perhaps get a stoma and that may be worse than actually not having the whole deep excision. I'm just saying explore everything now, before going down endo as those symptoms are symptoms for tons of different things. It could be a autoimmune disease, bowel disease like crohns or IBS, gastroperiss, other abdominal issues and even if it is gynecological it could be cysts or fiborids or PCOS, or adenomyosis or other things as well.

@SCeee What type of ultrasound did you have? I'd see if there's another GP in your practice who is nicer and more on it, perhaps start my asking reception whether there's one with a special interest in women's health. I'd see about different bloods as well. Also the blood in urine is serious, that might be more the kidneys and bladder and you may need to see urology. I'd want that investigated urgently as well.

Abuye · 23/08/2025 18:01

You can have stage four, deep infiltrating endometriosis and be asymptomatic.

Endo rarely shows on ultrasound; you need an MRI, or, ideally, an explorative laparoscopy.

TheLivelyViper · 23/08/2025 17:57

Till now you seem to be asymptomatic - which doesnt sound like endometriosis to me as it is a chronic illness and would be like having much more persistent issues ongoing for year and onset much longer ago.

Also your symptoms are very unspecific as in they could be gastrointestinal related or gastroperiss, something like an infection, cancer, autoimmune etc. It could be ovarian cysts or fiborids, jt could be your stomach or bowels (ulcerative colitis, crohn's disease etc).

You wound need to try the mirena coil and If the mirena coil and NSAIDs resolve it long-term then you likely have asymptomatic or less disabling endometriosis/ perhaps adenomyosis.

The stages of endometriosis are actually about how it impact your fertility - so a higher stage more impact on fertility but not pain. So a person with stage 1 endo could be disabled by it and have severe complications but a person with stage 4 may not.

But you could also be adenomyosis where the lining of the womb grows into the muscle of it, but unlike endo is localised to the uterus only. Thus, symptoms are mainly a couple days before a period and during your period. Main endo symptoms:
• Irregular or heavy periods
• Pelvic pain
• Pelvic pain on opening bowels (dyschesia) and wider gastrointestinal symptoms (diarrhoea amd constipation)
• Pelvic pain on passing urine (dysuria) and bladder symptoms sometimes
• Referred pain to the tops of the legs or back
• Fatigue

The main symptom of endometriosis is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period.

Can you be more specific about your symptoms and what the investigations you had, have found so far? If your pain is severe it might be an underlying condition. It could be fibroids or ovarian cysts.

Are you symptoms just on your period or elsewhere during the month? (Because if its just on your period, unlikely to be endometriosis).
What symptoms do you have during your period? And if you have symptoms not on your period - what are they? Is the pain worse on or off period?
If you had a transvaginal and/or pelvic ultrasound normally it can pick up adenomyosis. I recommend going to your GP ask for a pelvic ultrasound, a transabdominal ultrasound and a transvaginal one to see what they find.

You may have 1. Primary dysmenorrhea (heavy bleeding and painful periods and pelvic pain with no condition or cause or 2. Secondary dysmenorrhea so a condition e.g endometriosis or adenomyosis causing it. You will need to try NSAIDs and mirena/pill and Tranexamic acid first before any further scans like ultrasound and MRI. Often if the pain is significantly reduced with said treatments its more likely (not 100%) to be primary dysmenorrhea. Also very dependant on whether you only have symptoms on your period or across the month as to whether you have primary or secondary.

Then if ultrasounds pick up on anything (pelvic ultrasound or transvaginal) you may need to have an MRI to see endometriosis. However, the only way for definite diagnosis is a laparoscopy and then they will often excise the endometriosis tissue if they find it etc. But endometriosis is a chronic illness and cannot be cured, after surgery it will grow back, it cannot be excised from everywhere to leave organ functioning intact and then post-surgery adhesions often form.

I wouldn't go down the gynaecology route just yet - stick with your GP and investigate everything - bowels, liver, gallbladder, stomach etc and also ovarian cysts, fibroids etc. Once you get more definitive ideas from scans, bloods, stool tests etc - you'll be able to narrow down a speciality to go to if further secondary and specialist intervention is needed.

JLou08 · 23/08/2025 17:50

You need to be referred to gynecology, those symptoms could also be some type of cancer. I have endometriosis and it wasn't a sudden onset like that, I was always irregular with heavy periods, I started getting a lot of pain in my early 20s.

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