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. 😭

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

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

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

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

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

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.

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.