Symptoms: Hi all. Just wondering as to what... - Endometriosis UK

Endometriosis UK
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Symptoms

Chats80
Chats80
37 Replies

Hi all. Just wondering as to what symptoms all you lovely ladies suffer with due to endometriosis and how long diagnosis took.thanks x

37 Replies
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Titchx3

I'm wondering this as well. Been diagnosed already with having ovarian cysts on my right ovary and currently awaiting my gynaecology appointment as they're concerned it's Endometriosis. All I know right now is I'm in absolute agony. 😭

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Chats80
Chats80
in reply to Titchx3

Snap! Been told I have a cyst, however no body seemed concerned. Pains are just getting worse and worse. Got letter today for scan again Fri but gp seems to think I'm going to need a camera in as not everything can b seen on scans. I feel like pulling my hair out. Had issues for roughly 6 years now but don't seem to be getting any answers. Xx

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Titchx3
Titchx3
in reply to Chats80

I'm 26 and first felt pain like this when I was 16. Was rushed to A&E as they thought it was appendicitis but nothing showed up. Been arguing with my GP about it since then. Was sent for an ultrasound last month and whilst there the woman said she wanted to do an internal scan so she could see me right ovary better then 4 days later the GP is telling me that my right ovary has a fair few cysts, it could be Endometriosis and then goes 'oh yeah you might never have kids because of all this' I could've smacked her to be honest, she's scared me so much that I cried all the way home after the appointment. Xx

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Chats80
Chats80
in reply to Titchx3

Awww bless you. Fancy coming out with that without a 100%diagnosis! So what are they doing now with you? Xx

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Titchx3
Titchx3
in reply to Chats80

Got a gynaecology appointment 12th December but I'm going back to the doctors on Monday as the pain just seems to be getting worse. Xx

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Chats80
Chats80
in reply to Titchx3

Do u mind me asking what do your pains feels like? Only way I can describe mine is I feel like I'm getting stabbed. It literally takes my breath away. I've also found last 6 months there's certain sex positions I can no longer due to the pain then pain for days after. I also feel as though I'm really heavy down there, as if something is pulling down. Sorry if that's tmi. I also suffer from extremely heavy periods and I'm always exhausted even tho blood tests have come back OK. I was on the pill for many years then got sterilised so I'm unsure if my problems are due to that however gp seems to think not xx

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Titchx3
Titchx3
in reply to Chats80

Don't be sorry for asking its fine. We're all here to help each other. I've got stabbing pains in my groin area, which come along with a constant ache and a weird heavy feeling in my womb area. I'm constantly exhausted (had bloods for god knows what that's linked to that but they all come back okay). My bowel movements are all over the place and tend to be painful (especially when I'm on). My back and stomach kill me when I'm on (it's like a severe achey pain). Periods are heavy and irregular (have been since I started to be honest and I was 9 when I started) and I clot a lot. Its all crap lol xx

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Titchx3
Titchx3
in reply to Titchx3

There is a lot more but I'm rambling hehe xx

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Chats80
Chats80
in reply to Titchx3

Sure is luv, the amount of crap us poor woman go through is unreal 😩xx

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Titchx3
Titchx3
in reply to Chats80

I've been to the doctors again today as I'm not coping with the pain, found out the cysts I have showed blood in them on the scan which is why they're thinking endometriosis and they've now put me on tramadol 😩 pain has just been constantly getting worse and I'm struggling to walk now. This is literally draining the life out of me 😭 xx

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Chats80
Chats80
in reply to Titchx3

Awww bless you. Funny thing tramadol. I react bad to it but hopefully will help you xx

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Titchx3
Titchx3
in reply to Chats80

I'm hoping I get on with it. Never had it before only ever had morphine after my 2 knee operations. Hope you're getting on okay today lovely? Xx

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Chats80
Chats80
in reply to Titchx3

Woke up in agony with stabbing pains. Eventually dulled off about t time with pain relief. Would just be nice to have one day off no pain! Got 2 scans on Fri so take it from there. Thanks for asking xx

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Titchx3
Titchx3
in reply to Chats80

Good luck on Friday. Got everything crossed for you that things start moving along for you. I know the feeling of wanting a day off from the pain, would be nice wouldn't it! Xx

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Chats80
Chats80
in reply to Titchx3

Sure would. I'm definitely coming back as a male 🤣xx

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sanpit47
sanpit47
in reply to Titchx3

it took 10 years to get diagnosed found to have a large chocolate cyst on my left ovary which were both removed . My symptoms happened the day after my periods finished, a constant ache in my lower back and passage area that lasted 3 days and got worse. I was also diagnosed with Diverticulitis. Went on a nutritional diet the best thing I ever did

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Chats80
Chats80
in reply to sanpit47

Thanks for taking time to reply. Wow 10 years is a long time. I've been suffering for 5/6 years and no further forward xx

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Chats80
Chats80
in reply to Hidden

Thank you xx

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Littlepeax

I had stabbing pains in my womb, literally excruciating worst pain in the world. Had to get an ambulance several times. Then ultrasound found a large cyst then a laparoscopy confirmed endo. Symptoms apart from stabbing pains are, bleeding inbetween periods, lower back pain, pain when going toilet, heavy periods, feeling exhausted. It took a year or so to fully confirm what I had and laparoscopy defo helps with pain. I've had two now and although I get very bad pain still it's nothing like I did before. Diet can really help and control it though. Anti inflammatory diet helps x

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Chats80
Chats80
in reply to Littlepeax

Thank you very much for reply. Only symptom I don't have is bleeding between period and I think this is why I'm not getting anywhere. However new gp I have seems to be pushing for answers so hopefully I'll get some where xx

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Littlepeax
Littlepeax
in reply to Chats80

No probs, yes just keep pushing. I'd ask for an ultra sound first and go from there, they saw cysts on mine straight away and kind of confirmed it was endo (although lap is only thing that can really confirm it) x

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Chats80
Chats80
in reply to Littlepeax

Yes my gp said that. I had scan start of year that showed a 3cm cyst but I was told it didn't look suspicious and that was basically it. Thanks again xx

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Littlepeax
Littlepeax
in reply to Chats80

Sounds like endo to me. Drs dont seem to be too bothered though as it's not really dangerous just really hard to live with and extremely painful. If your really suffering push for a lap and look at diet. Best of luck x

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Chats80
Chats80
in reply to Littlepeax

Yes I'm going to as pain is daily now. Thank you xx

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IsabellaofLocksley

Hi, I took only two years to be diagnosed which is very short compared to many,even then though it was a tough journey. Saw many doctors, many misdiagnosed me, many stupid comments etc.. But this website really helped me to keep pushing, I don't know where I'd be without it!so completely lost, I'm sure. It's very hard to compare symptoms with other women, I became obsessed doing it, and convinced myself they wouldn't find anything.So it's important to bear in mind how differently endo affects each and every one of us.

My symptoms :

pain constantly all month,

pain got worse one week before period and got terrible during (having said that not every month was excruciating)

Painful urination in periods

Pain in pelvic area, lower back, thighs, legs and hips

Painful ovulation

Not heavy periods, but long nine to ten days

That's all I can think of now! Lol! There are more! Haha! But bottom line really after all this rambling on, is if you think something isn't right, then keep pushing, you know your body best and I really hope you get some answers soon! Any questions please ask! X X X

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Chats80

Thank you so much for taking time to reply.i said exact same thing to my gp , it'd my body and I know something not right. I was on floor other month when I ovulated, pain was unbearable. I'm defo pushing things after next scan. Thanks again xx

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GemmaSands

Hi, I'm really lucky to have had a pretty fast diagnosis, but I've been suffering badly for about 2 year. I went to the doctors in April because I thought I was blooding from my bum when I had my period, I would have the worst diarrhea and pain in my stomach those first few days I would hardly be able to leave the house. The doctor sent me for a colonoscopy which I had in June, that came back fine, and the consultant there said he would write to my doctor to refer me to the women's hospital because it could be endometriosis. Along with the upset stomach, I have heavy periods, I get aching stabbing pains all down my abdomen to my ankles. The pain is horrible especially from the groin down my legs, even when I take naproxen which is the only thing that helps me semi function I can still feel the pain like a humming through my body, almost like pins and needles. I get ovulation pain and random popping sensations or a stabbing pain up my bum.

I had a laparoscopy in September and saw the specialist last week and he said I have it mild on both ovaries. I'm glad they found it but also can't believe the pain I'm in if it's only mild, and from reading stories on here think wow, how are some of these amazing women even still functioning?

X

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Chats80
Chats80
in reply to GemmaSands

Or bless, I bet u were thinking allsorts 😔I'm always loose first day of period. Never even thought about it till I read what u said. So what are they going to do for you next? Xx

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GemmaSands
GemmaSands
in reply to Chats80

Well he said I need to go on the pill and it will cure it..but I know that's not the case. I'm putting off going back to the doctors because I really doing want to go on the pill.he wants me to go on cerazette? Think that's how it's spelt, I've tried a few different pills but It just doesn't agree with me, I pile on weight every time and it affects my mental health. So I've just been reading this site as much as possible for tips ad ordered some beyou pads last night to help with the pain and I'll have a think about next move.. x

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Chats80
Chats80
in reply to GemmaSands

I was on the pill for many years and had no issues, I was on cilest. But because I'm over 35 and I vape I've been told I carnt take pill anymore. A lady on here mentioned changing diet can help xx

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Vicky2708

Hi Chats80,

My diagnosis was fairly short however, looking back I had always experienced symptoms of endo from the age of 11 when I started my periods. I was diagnosed in 2017 aged 29 which started as really bad back pain. The doctor first of all thought it was a UTI, I had lots of blood tests which came back clear until a different doctor asked if I had had my cancer markers checked. They came back high so I was referred to gynae as an urgent case as there was a chance it may have been ovarian cancer (luckily it wasn't!). An MRI scan showed up what they believed to be endometriosis and I was diagnosed via laparoscopy 4 months later.

I would recommend if you don't already keeping a pain and symptoms diary - Endo UK have one on their website, which is useful (https://www.endometriosis-uk.org/sites/default/files/files/Information/pain-symptoms-diary.pdf)

Good luck x

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Chats80

Thank you for taking the time to reply. Yes I am going to start keeping diary as you forget little symptoms untill someone says something and you think ooo heck I get that 2! Xx

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Alfie96

It took me 10/11 years to be diagnosed. I had 4 ultrasounds in this time and they found nothing, however, I managed to find a doctor who would listen to me and was referred to a specialist consultant . The consultant listened to my symptoms and recommended I went for a laparoscopy. They found and removed the majority of my endometriosis in the laparoscopy.

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Chats80
Chats80
in reply to Alfie96

Will be my second ultra sound this week. Gp did say not everything can be seen on scan so either way she is going to refer me to gyno. Thanks for reply xx

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JOSANDY40

It all started aged 10. Painful long flooding periods of 7 to 11 days. By the age of 20 I married, symptoms got worse, pain worse and also throughout the mth. Flooding very difficult to cope with, attending the toilet every hr during the heavy clotting period or fear of imbarassing accidents with change of clothes. Aged 26 collapsed, passed out fell down the stairs, rushed to Hostipal, bowel blocked, finally diagnosed. Major operation, including, removal of 1st cyst, bowel resection, left ovary rejoined to tube, womb lifted up. Major distortion and adhesions found. Put on drug Danol, weight gain, pain remained. Aged 32 started bleeding every mth in lungs and developed hearing issues. 34 to 38 on Zoladex but had 4 keyhole operations for regrow cyst, other cyst and adhesions. Lung bleeding stopped, hearing better but inflammation of lungs and new back pain started, more bowel issues. Went back on Danol but developed pancreatisis. After this could nolonger tolerate any steriods of any type. Food ingestion issues developed. Intorance to mushrooms, milk. gluten, breathing issues after eating bananas.

Another cyst grew removed before trying IVF which failed became generally unwell all the time. Stayed on Zoladex but endo now meant I slept in a hot bath every night, increased painkillers. Could nolonger stay employed. Would fall asleep at my desk or wouldn't be able to do any simple tasks or drive. Stayed on Zoladex, became depressed, started to get forgetful, unable to be myself. Partner left me he couldn't cope. Only in the last 3 years have I started to find my old self. I nolonger have periods, yet still in pain. Take various painkillers including morphine and manage but can't work. I sleep a lot, I can't walk very far. I have problems emptying my bowel. I have back pain, inflammation some times. I often still have to cancel appointments and rarely see family as they live to far away and my travelling can be difficult. My bowel is very bedded down with pockets in it.

Life is better on my own. I don't need to explain myself. It has been a difficult life, but finally there seems a improvement, enough to spend time occasionally with male company.

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Chats80
Chats80
in reply to JOSANDY40

Wow,I don't know what to say ☹️Jesus you haven't half been thorough the mill with this .I'm genuinely upset for you .I feel a fraud in comparison to what you have suffered with .im so relieved that you are finally getting some improvement xxx

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