It all began on January Thirteenth 1998. My fourteenth birthday!

I awoke around three or four in the morning with this pain, which I couldn't understand what it was, I got up and went into the bathroom and there was abit of bleeding. I thought 'fantastic'. I had finally started my period! I went into my mum and dad's bedroom and woke my mum and told her. She just told me what to do and to go back to bed, so I did.

My first period was ok, period pain and bled for about seven to nine days. My periods were then regular as clockwork for the next six months, then I had nothing for six months. I didn't worry too much about it really as they said it can take upto two years for your periods to regulate, I thought it was normal.

Well my fifteenth birthday came and BANG, my periods started up again. It was awful, bleeding was heavy for a good three weeks, leaking at night and having to change my heavy duty sanitary towels every hour and the pain was awful, I couldn't move! Couldn't even get out of bed, I felt so sick, I would crawl to the bathroom to go to the toilet, or even throw up! This continued for the next couple of months, except my periods weren't regular, and I never knew when my periods were going to strike.

I just felt so drained and dreaded each period. So I took myself to my General Practioner.

"Oh its perfectly normal when you first start periods" and I was prescribed mefenamic acid tablets. I tried them for a few months and there wasn't any difference to how I was each month. So I went back to see my General Practioner, who then prescribed me Microgynon 30. This was awful too, as each day I took the tablets I was sick or felt really sick. They didn't seem to make any difference either, so I took myself back to my General Practioner after several months, who then prescribed me a lower dosed contraceptive pill Celeste. My General Practioner thought it might help with the symptoms of nausea and vomiting. It didn't make any difference whatsoever. By this time though, my periods had gotten worse and the pain had gotten extremely bad, to the point I would feel like i was going to pass out all the time.

I was now nineteen and was so depressed! I couldn't do anything. I couldn't have a social life and I had no energy to do anything whatsoever. So I went back to see my General Practioner, who then tried to re-prescribe me mefenamic acid tablets again. I couldn't! What was the point?! If they didn't work previously what was going to say they were going to work this time, especially as the pain and periods were alot worse then they were four years previously! I just wanted it all to end. I told the General Practioner, "I feel like I want a hysterectomy, i'm nineteen and shouldn't be feeling like this!" My General Practioner then FINALLY referred me to a gynaecologist. (By this time, I had tried allsorts of painkillers, paracetamol, ibuprofen, all over the counter stuff. I was now on co-codamol. Nothing seemed to touch the pain).

I went for my first gynaecology appointment July First 2003. It was OK, embarrassing but ok. My gynaecologist decided that he wanted to do a hysteroscopy to see what was going on inside my womb.

September Twenty-Nineth 2003, the day of my surgery! I was petrified! I'd never been into hospital before, let alone having surgery! AHHHHH I thought!!!! But it went ok, I felt really sick from the anaesthetic when I came round, but when my gynaecologist came round, he told me what he had found. Alot of uterine polyps, which he did a Dilation and Curettage to get rid of as many as he could. He said it was unusual for someone of my age to have so many, but he reckoned that was the problem.

He was wrong. My periods continued how they were, painful, very irregular and prolonged! Each period that came i'd cry. Not just from disappointment but frustration and pain! I continued to be sick and I was literally disabled! It was embarrassing to call up work and tell them I couldn't come into work because of my periods!

I had my next appointment with the gynaecologist, I don't know who they were but they didn't listen! They just heard what they wanted to hear. "We'll try you on this, we'll try you on that" They increased my painkillers from co-codamol, to co-dydramol to Diclofenac Voltarol.

But there was no change in my periods, this continued for months and I really couldn't take much more!

My next gynaecology appointment I broke down in tears, the gynaecologist said "we'll do a laparoscopy to have a look and see whats happening, but I doubt you have endometriosis because of you're age!"

Endometriosis?? Where did that come into it? At that stage, I hadn't even heard of endometriosis!

October Seventh 2004, I go into hospital for the diagnostic laparoscopy. When I came round from the anaesthetic, I was in pain, so much pain. I couldn't breathe. They gave me morphine, I was on a drip and on oxygen. The gynaecologist came round, and whilst I was all doped up, she explained their findings. They found a few small deposits of endometriosis on my womb. (So much for not having endometriosis because of my age.) They kept me in overnight because I almost passed out and hadn't been to the toilet yet. I was still in alot of pain, but every hour throughout the night, the nurses would come and wake me up and tell me to go to the toilet. I didn't need to go! I would go when I needed to go!!! Not when i'm dictated to go! It was around five am, the nurse came and woke me as I still hadn't been, she told me if I didn't go in the next hour, they'd give me a catheter!! But where I had drank some water earlier, I needed the toilet myself. Without being woken up, I got up at five-thirty am and went to the toilet! See I thought! So I didn't have too good a night. They discharged me at around ten am!

After the laparoscopy, my periods returned to how they were prior to the surgery. I was in the same place I was! I just didn't know what to do anymore. I went to my General Practioner, who prescribed me Tramadol fifty milligrams, four times a day and Diclofenac Voltarol fifty milligrams, three times a day! These painkillers didn't help! It didn't even touch the pain whatsoever.

I had my follow up appointment with the gynaecologist Fifteenth February 2005 (I was twenty-one) and yet again it was a different doctor altogether! Third doctor since July First 2003! I couldn't understand much of what he was saying, but the treatment options were:

The Mirena Coil

Zoladex injections for maximum six months.

He wanted me to make a decision there and then. I chose the Mirena coil as I thought this was the better option out of the two! I hadn't a clue what either treatment was, or how it would affect my body!

The day came to have the Mirena inserted, April twenty-nineth 2005. Yet again, it was ANOTHER doctor. I was going to have local anaesthetic for insertion. But it didn't get that far. It hurt WAY too much and I was crying so much, so the doctor decided it would be best if he stopped and I have it inserted under General Anaesthetic.

My periods became more erratic, more painful and by end of May, I was bleeding alot longer, I had a brown/black discharge (old blood apparently) at the beginning of the period for a few days, sometimes upto a week and at the end of each period for about a week. So I was in agony and bleeding for about three or four weeks each period! I wasn't getting much of a break at all!

October Seventeenth 2005, the date I went in for the insertion of the Mirena Coil. When I came round from the anaesthetic, I had extreme pain. I couldn't understand why I would have this pain but I did! I felt that they thought I was making it up! I wasn't!!! It was happening! It was agonising and it just wouldn't go away! I had a paracetamol drip and was on oxygen as my oxygen levels had dropped because I kept holding my breath because of the pain! The painkillers didn't help and the nurse's didn't seem to want to help! After being back on the ward and just trying to sleep through the pain, it came to being discharged! They gave me four HUGE antibiotic tablets and told me I had to take all four within twenty-four hours of insertion! I thought you have got to be kidding me, there is no way I can take those! I struggled enough taking my painkillers and the Pill! I got home, I slept and I attempted to take the antibiotics, the first one went down, but I felt really sick, so I tried to take the second one, which took me a good hour, but it eventually went down, and the third one, I just put it in my mouth and I had to run to the bathroom to throw up! So it had been a waste of time! I threw the antibiotics back up! But I was still in alot of pain!

It was strange, I still had the periods I had prior to the insertion of the Mirena Coil, they were long, heavy and very very painful. But this time I literally bled EVERY single day! I was in absolute agony every single day! I could barely function! I couldn't do my job! I was signed off work for near enough two months! I got an earlier gynaecology appointment.

Twenty-Third January 2006, I see my actual consultant, who is absolutely lovely! And he isn't happy that the coil hasn't made any impact! So we go for the Zoladex injections, I had my first one, there and then.

I had a period. Same as before. But I didn't expect things to change straight away. Like he had said, it can take a couple of months for the zoladex to start working. So the second month came and went, and yet again I had another period and it was as bad as before. The third month came and went, and again I had another period and the pain was exactly as it had been! By this time, i'd gotten disappointed and heartbroken that the zoladex hadn't helped. I couldn't understand it. I had the fourth. And I had another period. Infact I was on my period when I was supposed to have zoladex number five. But I didn't want it. I didn't want to go through that for it to not work! It was a waste! So I told the nurse who was going to administer it, I was on ANOTHER period. She was gobsmacked! She couldn't believe that the zoladex nor the Mirena were working, and considering I had both! So she went to speak to Sister and the Sister agreed not to administer Zoladex number five and they got me an emergency appointment with my lovely consultant.

June Fifth 2006, I see my consultant who is abit stumped to say the least at the results (or I should say non results) of the treatment plan we had been following. He suggested he would do an overhaul and have a look and see what else is going on. So that means another hysteroscopy and laparoscopy but at the same time! I felt relieved in a way, I felt I was being listened to and not being fobbed off!

July Thirty-First 2006, the day of my laparoscopy, hysteroscopy and removal of the Mirena Coil (at my request). I go down, next thing i'm waking up in recovery, I have sharp shooting pain in my right side. The recovery nurse was really nice! She gave me morphine to help with the pain. I went back on the ward, the pain was still there!! I had more painkillers, but still the pain was there! A nurse called a doctor in as she was concerned. He felt my tummy and it was very tender and swollen. It hurt so much. He suggested I try to wee and see if that helps and he would go read my notes and return. I went to the toilet but the pain was still there. The doctor never returned! Nobody came to tell me what they had done, or what they had found or not found during the operation. I had no idea what they had done, all I knew is that I was in so much pain, and it wasn't like that last time I had a laparoscopy. I was kept in overnight. The doctor who had seen me the evening before, came and saw me the morning after. He asked me if I still had the pain, I did! He felt my tummy and it was still tender. I asked him, "what did they find during the operation as nobody came to see me after?" He replied "During the laparoscopy everything looked normal, they did find a small deposit of endometriosis but that wouldn't cause the pain you have been in" I just replied "ok thanks".

I was confused. I just couldn't understand it. That was basically what had happened back in 2004. What about the hysteroscopy? Did they remove the Mirena Coil? How comes I heard the recovery nurse tell my ward nurse that I had a Dilation and Curettage? Why didn't he tell me about that?! So at the minute i'm in limbo, i'm planning on going to my General Practioner's to get any information that I can, regarding the operation. As I was told NOTHING! I reckon that the doctor who told me that had looked at my laparoscopy notes from 2004!

How I feel right now, is complete and utter confusion. I just don't know what to think, what to do, where to go?! I have nowhere to turn!

I went to the General Practioner a week post op to see if I could get information. Well that was a pointless visit. She couldn't tell me much, except that during the laparoscopy they found small bit of endometriosis, and during the hysteroscopy everything looked "normal". Thats all she could tell me, she then proceeded to say "Now we know the problem isn't gynaecological, maybe we should look at other avenues, such as Irritable Bowel Syndrome". Last time I read about Irritable Bowel Syndrome it only affects you're bowels and not you're periods. So i'm even more confused! They don't believe me, they don't think that the small implants of endometriosis can be the route of the agonising pain i'm in each period!

A few weeks passed and I still hadn't heard from the hospital, about a follow up appointment or anything, so I rang my gynaecologist's secretary to find out if I was getting an appointment, or if someone was going to be able to tell me what actually happened in the surgery, and where I will go from now. But when I rang I was just told, "Oh no, you're not getting a follow-up appointment, you're General Practioner has been sent a letter stating that you are being discharged but if you get symptoms again, you need to go to your General Practioner and get re-referred."

So that basically means, i'm back to square one! BUT this time it's going to be harder to get another opinion, with the General Practioner's being in total control on referrals! What on earth am I going to do now? If the General Practioner's think it's only Irritable Bowel Syndrome, how am I going to convince them that it's nothing to do with Irritable Bowel Syndrome!? I know for a FACT that even microscopic amounts of endometriosis that can't even be seen by the naked eye, even a trained naked eye can cause excruiating pain, and yet a whole pelvis full of endometriosis can cause absolutely no pain whatsoever! Thats the problem with this whole disease, it's so little known, so little understood!

I'm back to the beginning, back to where I was back when i was fifteen! Having to fight all over again to get heard! I don't know if I could really fight this battle all over again. I may aswell just accept the fact that i'm going to have to live with this disabling pain for the rest of my life! I'm not going to have a life! My life is going to be controlled by my periods! What a life to have!?

I had my first period since the surgery, September Fourth 2006 and oh my gosh it was awful! So so painful and so so heavy! I was having to change the heaviest duty sanitary towels every single hour, and even then I was almost flooding out! The pain was SO intense, I felt sick, I wanted to be physically sick! I wanted to call in sick at work, but I resisted as I can't afford not to go into work, all because of the same problem! PERIODS! I just sat and cried at work. I felt like I was going to pass out all the time! Erratic and irregular periods! How is that IBS?

Anyway, I didn't go to the General Practioner about the period as I didn't see the point as it being the first period since my surgery, and I know they would just say "it's bad because it's you're first one since the surgery". Even though, all the other periods after my surgery have never been that bad! It's only ever been that bad since I started my periods. Are they also telling me i've had Irritable Bowel Syndrome since I was fifteen? A little hard to believe! I can kind of accept that I have Irritable Bowel Syndrome aswell, but not that Irritable Bowel Syndrome is the only cause of this horrific pain!

Thats the only problem, so many women and girls get fobbed off by doctors all the time, with "it's normal", "period pain will get better", "Irritable Bowel Syndrome" etc but the doctors don't understand! They don't have to go through it each period! We do!! They say it's ALL in our heads! Well i'm sorry, but I don't sit at home thinking to myself "Oh I think i'm going to be in absolute agony today so I can't function as a human being and do the things I love to do" just for the sake of being in pain! NO WAY! It is NOT in my head, it's NOT in our heads! It's real! Accept it and HELP US!

Ok, so right now i'm completely stuck in a rut, but there maybe some help at hand. Through my work, i'm seeing this top notch private General Practioner in London on October Twelfth 2006, (Occupational Health) due to my large periods of sickness this year! So i'm hoping and praying that this General Practioner will know a thing or two about endometriosis, and not the theories, but the true facts of this horrifying, disabling, depressing disease.

After seeing this private General Practioner, I felt kind of listened to and kind of not. There wasn't much that she could do except for advise me. Which she advised that I don't have Irritable Bowel Syndrome! She also felt my tummy (which she is the first and only doctor so far to ACTUALLY feel my tummy) and as I was on my period she felt the tenderness in my tummy. This period has been pretty painful and i've completely lost my appetite and feel sick. She also advised that I should try the mini-pill! But I don't think that would help in reality. She did say that I should go back to General Practioner and demand to be referred to an endometriosis specialist, who may be able to help me further! She is sending me a copy of her report, which I will take with me. So i'm waiting for the report to arrive before I make a General Practioner appointment. I feel a little bit better, but i'm still angry and annoyed. Things will help IF I get the referral I so need!

Since seeing this private General Practioner, i have had yet another horrific and painful period! Again it lasted eight days and was so heavy and painful! I felt physically sick and unable to move or do anything. The pain was so intense I even contemplated on taking myself to our local Accident & Emergency Hospital. But I didn't. I just laid in bed, crying myself to sleep! Even though my period ended, I'm having excruiating pain in my hip area and my low belly area! I just feel so suicidal and I just want everything to end right now. I can't cope with not being heard anymore. Not being taken seriously! How on earth can i continue to live like this?

After yet another long cycle, my period decided to arrive early this morning (Thursday Twenty-First December 2006) and since my last period, Sunday Twelfth November 2006, I've had continuous pain. But not too bad, it has been pretty minimal...so when I started bleeding this morning, I felt physically sick, dizzy and had so much pain I just wanted to cry. I had to refrain though as I was at work! Now my period is here, I'm dreading the next one! I hate this pain, it's so draining and so painful! How anyone can presume that it's in your head, I really don't know!?!

I got a copy of my medical notes finally on Twenty-Seventh December 2006 and they were rather interesting to read! Alot of information that has made me rather angry, some information which was untrue! I couldn't believe what I was reading. Hospital letters sent to my General Practioner, saying I was a difficult girl and I didn't want help or treatment.....what a joke?!

Also one of the letters STATED that I have an endometrial spot in the Pouch of Douglas and flimsy adhesions (October 2004 Laparoscopy) and yet in the letter from the Laparoscopy and Hysteroscopy in July 2006, it states that my Pouch of Douglas is completely clear and I have a speck of endometriosis on the uterosacral ligament?! So how can adhesions disappear into thin air? Why wasn't I told? Why didn't a doctor come and tell me after the surgery? Also I read that I had a "blood clot" in my uterus too, why would I? My period ended the day before the surgery?! It just doesn't make sense. It states I DO have endometriosis, so why won't anyone help me? Anyhow, I went to General Practioner's to get a re-referral to another gynaecologist consultant, preferrably one who specialises in endometriosis, not that the General Practioner listened....He has referred me to a new gynaecologist consultant at the same hospital as last time. It's a second opinion but I am not going to take anything lying down any longer. This is my body and my fertility they are messing around with! My appointment is on February Sixth 2007

I've been getting some serious pain the last few days, my period is going to be here any day, or any week...whenever it decides to show up I guess. No pattern, just severe pain! I wonder how long this cycle is going to be! Well my period showed up on day thirty-five. I came on January twenty-fifth, and have been in really bad pain. It's been a struggle walking around, as the pain has radiated down my back and into my thighs. The pain seems to be alot worse this time around. I felt like I was going to pass out. I felt sick and have been changing night sanitary towels every three to four hours! Now this period is here, I dread the next and the next after that and so on and so forth. I don't know how long this period is going to last. I never know. They change each time I have a period. Ok again, with this period, like the last periods I have had in the last six or so months, when emptying my bowels, I've had rectal bleeding also, and increased pain! Argh, it seems weird it's only EVER with my periods?! So whats going on?? I will tell the new gynaecologist in a week!