Hi, I'm Liz, with a good news story. I put up with increasingly painful periods for several years, feeling that it was probably no worse than other people experienced. Sex was sometimes uncomfortable (in some positions more than others), and during my period it could really hurt to pass a bowel movement. Two years ago, aged 30, I had to have my appendix out and during the operation they found a cyst on one ovary the size of a cricket ball and severe endometriosis adhesions sticking my ovaries and fallopian tubes to my uterus and bowel. I was initially told that the ovary with the big cyst on it had probably been destroyed. I had two further laparascopic ops with six months of hormone treatment in between to create a menopause. The ops and recovery were really quite minor in the great scheme of things, and the side effects of he hormone treatment were effectively treated with HRT. At the end of this I had a "normal" pelvis (including two functional ovaries), and I have just given birth to a lovely baby boy, who was conceived within 8 months of the last operation. I am waiting to see if the endometriosis will come back, but will never put up with such bad period pains again.

In my experience GPs are not great at diagnosing endometriosis (at least, the three at the surgery I was going to didn't manage it), so you may need to push for investigations or referral to a specialist. I think I was lucky to live in an area that has a number of excellent specialists who are leading the way in treatment of this condition. If you don't think you are being offered appropriate or aggressive enough treatment I would search online for another specialist – many of them are in private practice as well as working for the NHS so do have websites. Don't keep waiting as endometriosis can cause a lot of damage and affect fertility so the earlier it is caught the better.

On a side note, the whole time my periods were getting worse I also suffered from a condition called BPPV – Benign Paroxysmal Positional Vertigo, which caused intense dizziness that sometimes lasted for weeks at a time. Mysteriously, I have never had another attack since finishing the endo treatment. Could they be connected in some way?

Hi to all,
Im 21 years old and was diagnosed with endometriosis at 17years old. I suffered awfull periods and very irregular bouts of severe pain. I was at my doctors/clinic nearly every week and they just fobbed me off. I got the impression they thought it was all in my head. I tried every contraception known to man to try and help with this. As a last resort i had the mirina coil fitted. Three days later i was rushed into hospital for major surgery. I honestly thought i was dying. The coil had been inserted onto a collection of chocolate cysts. Thats how i was diagnosed. Growing up i saw my friends mum suffer with the condition so i hade a little knowlage of it. When i was woken from surgery they sat me down with my Dad and told me my chances of having children were very small. My whole life came crashing down on me. All iv ever wanted is children. 17years old and as far as i was concerned life was over. Iv had prostap injections to try and help but the HRT messed with my head so had to stop it. I miscarried 3 years ago at 12weeks and havn't been caught since. I would never wish this on my worst enemy. Im angry that no one listened to me when i told them there was something wrong. Iv now had a total of 4 laproscopy procedures inc lazer surgery, cyst removal. I was rushed into hospital only last Thursday in agony and still bleeding for the 4th week running. I was put in a side room on the Gyne ward and pretty much left to sort myself out. In the end i discharged myself so my partner could care for me at home. I take tramadol far too often and worry about the long term effect they may have. Im desperate to be a Mummy but my luck just isnt in. Im hoping that if i havn't had children by 30 they will do a hystorectomy as i cannot do this for the rest of my life. The way this condition is dealt with needs to change. There should be more research into the causes and cures of the condition. Not only are we expected to suffer in silence with this but you end up with 3 for the price of one with IBS and PCSO's as Endo's sidekick. 7 people i know also have the condition. There is not enough awareness of it. Girls are not told enough. All we know at 13 is your gunna get periods. Not what you might feel what is normal or what to watch out for. You all know just as well as me that life with Endo is hard but its the only life we know and all i can do for now is pray for us all that 2morro is a little easier. I have the love of a good man and hopes for changes in the future. I praise you all for your strength i know how hard this is. Good luck and Better health to you all. x

Hi im also 23. I ve also had heavy periods right from the go. I was diagnosed with Endo in 2007. Through laporscopy, they found one small spot. My symptoms were irregular periods, sometimes i wouldnt come on for 10wks. Some might think that s brilliant, but not when u dont have a clue when ur coming on and accidents happen. Sex sometimes hurts. I have constant tummy problems, bloating,bowel movement and my stomach makes loud noises. I tried the pill to supress the symptoms but the pill made my migranes worse. I had the mirena coil also which was better for me. Now im trying for a baby and just hoping i can get pregnant. If anyone is suffering from heavy periods like i was, go to the doctors, mention Endometriosis, look it up on the internet. I was never explained it properly what endo was by the doctor.Get checked out x

hi i have been suffering with really bad periods since the day i started am now 21 and started my period at 14 .i dread every month because i pass out and be sick everytime for the first 3 days .i cant live my life properly and my doctor has been rubbish saying i will grow out of it .he firstly sent me to a std clinic which everything came back normal and then just left it .2 months later i have gone back and kicked of .i cant live like this having to go home from work because i am passing out.so managed after a lot of persuading to send me to hospital .i go next week so will let you no how i get on .

i am 23 and for the last 4 months a week b4 and a week after my periods i bleed after sex quite a bit, my doctor has done swipe tests and checked for stds and they came back clear, when i last went the doctor tried to do a smear test but as soon as the swab touched the neck of my womb i started bleeding quite alot. i have been referred to the gynaecologists and may have to have me womb quarterised, will this affect my fertility and does anyone think they know what i may have.

Hi ladies! I have Emdrometrios and had it since i was 17 and i hate it! Painful heavy bleeding pain during and after intercourse really painful bowel movements ah its a nightmare! I noticed a few of you had gotten it removed? Was it a large area that was infected as i am in a lot of pain most days and they wont remove mine as they say it is only a small amount, i know a girl who has a large amount and it doesnt cause her much pain and she gettin hers removed. THIS IS NOT FAIR!! any suggestions?

Hi Im kayleigh 21, I just wanted to say to everyone who is experiencing painfull periods to ask your doctor to refere you to a gynaecologist, as i suffered pain all through my teens and my gp put it down to IBS (which I do not have!) I have recently been diagnosed with Endometriosis, and like most women didnt have a clue what this was. But i have trialed serveral treatments, the pill ( which wasnt best for me i was still in pain) I am now in a medicated menopause (the joys!!!) and it is brilliant I havnt even had such as a ache! Im nearing the end of this treatment and hoping that my periods wont come back painful.
Good luck to you all,
kayleigh

Hiya, I have had Endo for 5yrs and within those 5yrs I have had 2 Major surgeries. I no longer have my left Ovaries or either tubes. Having been left with my right ovary, I'm now having to deal with the thought that I could never have a child without IVF, although this is my only chance – I don't understand how come the doc's cannot freeze eggs for me. I don't have any children yet, just turned 30yrs and still living with Endo. Every month I dread my p coming, he pain is nothing but a killer and 150% gets in the way of my everyday life. I sincerely feel like I cannot cope with it anymore. Yesterday I sat in the bath, the next thing I noticed was these big big fat clots in the water, my doc has me on various tablets and he is sending me back to the hospital, YES BUT WHEN. I've been bleeding from my bottom too, I just feel stucj and tired….x

I have suffered from painful periods for years. 6 months ago i was diagnosed with ovarian cysts and i've had so much pain every 2 weeks since. I had the marina coil fitter 7 wks ago but i am still having sever pain around the time my period is due. I have been taking pain killers like tramadol 300mg daily or pethadine because i cant move with pain. I cant go on like this and no one can tell what is wrong. This can not be normal. Help.

Anna,

I have endo diagnosed by laporoscopy and I also have a UTI continuously. I think they can be linked, because there are consultants who deal in 'genital-urinary medicine' – especially in women, since the reproductive systems are so close to each other. I had a coil fitted which sorted out the endometriosis (other methods of treatment such as the menopause implant and the pill didn't work for me) and now I take antibiotics every day in order to prevent UTIs and this seems to work. Unfortunately it seems episodes of a lot of sex bring on a UTI despite taking antibiotics and making sure I am very clean….. :(