I don't know what to say, just need to say something, anything.

[hollyyy23]

Hi everyone, I have recently found this website due to my occupational health nurse offering me advice and she pointed me here. (I owe her a thank you as she was the first person I've come across who understood me)

I first started my periods at age 12, by my 3rd period something was definitely wrong. I was travelling with my mum when 'my do' came on, I was cramped over in pain and had a sudden urge to evacuate my bowels she had to pull over at a fastfood restaurant for me to use the toilet. in this 45 minutes I was uncontrollably vomiting and diarrhoea at the same time, I broke out into a full body sweat were I was dripping from head to toe all the colour had drained from my face, I became unable to walk and talk and passed out.. I came too once the ambulance crew arrived and supplied me with gas and air but I was still unable to talk or walk I was too weak, 'my do' had completely wiped me out. At the hospital I was diagnosed with having a uterine contraction at 12 years old.

My mum had been diagnosed with endometriosis so my GP then diagnosed me with it and believed it to be hereditary. I haven't had any extensive testing done until recently, I physically can't live like this anymore so I've put my foot down with my gp as he keeps prescribing pain relief instead of finding the root and tackling it and I braved my first full internal swab with excruciating agony and a lot of tears and maybe a few muffled whimpers, I physically can't have anything penetrative the pain is sickening and deep in my tummy enough so to make me vomit through pain and for days after I can still feel the almost 'bruising' of my inner stomach.

As well as this I suffer severe bloating for upto 2 weeks before/during/after ovulation. I lose my appetite whilst I'm menstruating and have severe lower back pain that spreads down into my bum and backs of my thighs.

'My do's' that I refer to are what I've named them because literally there is no words to describe It. On average I have around 16-20 periods a year, all irregular some just 15 days apart and 80% of those I have one of 'my do's' ..

I'm sorry for the long winded explanation I just don't know how to express myself that well. Is there anyone else out there that can tell me I'm not alone please, tell me that there is other women out there who suffer the same as me

I've suffered for 10 years I'm now 23.

[charxcx]

I'm 23 too, recently diagnosed with endo my bowels is stuck to my uterus which is stuck to something else and my left overy is stuck to something else! Spent years and years with gps saying oh it's ur age url grow out of having bad periods put me on the pill to help control them so I came to terms with every month I would either be sick from pain or completely out of it on painkillers and lack of sleep and energy they wernt heavy practically non existant if I'm honest just absolutely excrusiating and the week before I'd look about 6 months pregnant and have every pms symtom going. I used to find having sex around my period unbearable if wasn't until I pestered my gp every month complaining of this pain in what felt like inside my bottom which I now realised was my bowel being imflamed at first he said ibs but I persisted till eventually I got my lap etc etc so now I am on another pill which seems to be working but I double up for 6 months at a time so far no pain, no bleeding the odd niggle and now uti so fingers crossed all works out! I completely understand your pain and frustration!!!! X

[Andys_Girl]

I'm 22 and this whole thing is beginning to ruin everything! I haven't been able to get a diagnosis yet because I've been fobbed off with ibs and PID and told i couldnt possibly have endo because i'm not a 40 year old woman! I have been referred for zoladex injections but that was four months ago and my appointment still hasn't come through to start having those so until they do it seems I have to put up and shut up :/

Me and my partner have been together 6 years and I feel so bad for him because this last year I just haven't had any libido at all, the thought of having sex at all makes me want to cry because its so painful, especially afterwards I feel like I could curl up and die. I've also been super tired lately and literally get up go to work, struggle all day then get home at 3pm and go to sleep again so i have absolutely no social life at all ;/. Then theres the constant uti's and the lower back pain that just never goes away and this week ive had sharp stabbing pains in my right ovary which have knocked me for six. Just so fed up, my mood is constantly down recently and doesnt seem to stay up for long at all! Just feel like i've turned into a nagging old woman at the age of 22 :/

I like you started my periods early, i think I was 10 and every time I came on it was heavy and painful, to the point i couldn't walk, i was put on the pill which has worked well for four years but the last two have been unbearable and im so fed up of being told one thing by one doctor and something else by another and then having to wait 8months between appointments! Its ruining my relationship and my social life, and eventually I can see it affecting my work because i'm already starting to have to have days off sick and tired!

Sorry if this post is ranty but i seen your post and it just encouraged me to let it all out!

I hope you get sorted soon! Its not fair having this awful condition! Xxx

[Bee_22]

Hi there,

I've just read your story. Such an awful thing to have happened to you. My symptoms aren't exactly the same, but there are definite similarities. I started my periods at 14/15, a normal age and being very slight we were not at all prepared for what happened next. My first period lasted 10 days. I had diarrhoea, constipation, I was nauseous and eating was the last thing I wanted to do. It was so heavy I was going through the most absorbant pad every 20 minutes and the pain had me writhing on the sofa, hoping that there would be someone, somewhere that could take the pain away.

My periods were massively irregular; some coming once in two weeks (which means I had a constant period because they would never last less than 10 days) or I'd be blessed with having 2, 3, 4, even 6 months off. I went on the pill, and it worked for about 7/8 months. But in that time my friends, who couldn't get their heads round it (I mean, they were just kids!) had someone abandoned me - believing my pain to be attention seeking. It wasn't until the pain stopped working and I had a migraine and a period simultaneously at school, that they realised I wasn't making it up. Won't bore you with the details, but it was highly embarrassing.

I guess I always knew that I had something wrong with me. No one else took as much time off school as me, and everyone else seemed to find themselves being proud that their period had started; but I just saw it as the devil. My doctors were reluctant to do anything about it and put it down to ibs. It wasn't until my ma found a book on endometriosis when I was 17 that it finally seemed to fit all my symtoms. My family believed me to be 'milking it', but I had steadfast friends by this point, so it didn't matter. It took until I was 19 and struggling with the pain in uni that they did anything... I woke up not long after to be told that there was nothing wrong with me, and discharged. Awful.

The drs then gave me codeine and mefanamic acids for the pain. Didn't really work, but the mirena coil did! Periods have been nothing, but the pain came back. I got diagnosed after 8 years on the 01/12/14 (I'm 22 now) by going private. Moderate endo, and he couldn't remove it all because it's too near my bowel. My boyfriend's been fabulous about it, and is always there to hold my hand when pain or anxiety hits.

I wrote this to let you know, you are in no way alone. Push for your diagnosis and treatment. If you're drs useless, get a new one... That's what I did and he's fabulous. If you ever need someone to chat to, please do. Always here! Bee x

[woolston27]

Hi, have you been referred for a scan or laparoscopy? This is the best way to see what is happening in there x

[givemeananswer]

Hi Hollyyy23,

I also have endo and my daughter is suffering the same as you discribe. She has not been diagnosed other that a endoscopy which they suggest she has IBS. Of her own choice she went gluten free and has benefited so it's been over a year now of staying gluten free. She has her life back. They wanted her to get tested via colonoscopy for celiac but told her she has to start eating gluten again to test. She refuses to reintroduce gluten though so as long as this continues to give her relief she's sticking with it. I started a G/F diet 9 weeks ago, it takes about 4 months I believe to clean your system and see results but I've lost 15 pounds and I'm liking that. She has lost 40 pound in just over a year. We aren't grossly obese but could afford the loss. It also reduces the amount of estrogen and for endo sufferers that helps too.