My Endo Journey....So far.
That thing that girls find out about and wait for. We wait, nervously, anxiously, expectantly. We're told that it's a big thing, an important thing. It means we're becoming a woman. If I'm honest, I suppose I never really gave it too much thought as a youngster.
I was eleven when I walked into my room and saw my Mum fiddling around in the bottom drawer of my dresser, what on earth could she be doing in the 'Neverland' of my drawers? When I asked her what she was doing, she stood up, pointed into the drawer and said, "One day you're going to start bleeding from your fanny. When that happens, you have to put them on your undies". That was it, period talk over.
It didn't really fase me. I had friends who had older sisters and they had told them heaps about it. They in turn then shared it with their friends. What did get my attention was the giant sized packet of pads—I wondered if you used a whole packet in one period. Yeah ok, it was 1991, but in my family, we didn't talk about real stuff. Learned behaviours passed on like DNA. Vagina's and boobies and periods, Oh my! We never discussed these things.
My first period occurred when I was 12 . . ."Ahhh . . .", I thought, "So I didn't have to poop after all, that pain was a period". I didn't tell my Mum for 2 weeks (for reasons I don't need to share here). The first person I told was my neighbour friend, she had hers already and I had a couple of questions. Like, if it's blood, why is it so dark, like almost brown in colour? Is it meant to be 'goopey'? How long will it go for the first time? Unfortunately, she didn't really want to talk about it and all I got in return was that people don't really talk about periods. Ooook, why?
About 4 days after I first got my period, I told my friends, not that they believed me. Bitches. I was the fat 'joke' in the group and never taken seriously, I sometimes wonder if they ever liked me. "Oh you're such a liar Lisa! As if you're the first. I bet I'll be the first of us," was the response from one of the girls. I think she was just jealous. I got boobs first, then my period.
Then came the time I had to tell my Mum.
Of course she was so happy, all the "Wows," and "Oh my little girl is growing up."
Still though, no further discussion. I just figured I knew all there was to know.....Oh how far from the truth that was.
Year 7 is a blur of hell and stress. There were things going on at home that I didn't know how to deal with, there was this pesky little brother always annoying me or trying to rip the heads off my dolls, there was the teacher from hell—satan's mother—If teachers did now what she did to me and a couple of other students, she'd be sued and probably have a holiday in jail.
Then there was the fact that I had to have a period every month. Now, like I mentioned before, my Mum had a 2 second talk to me about periods. I had no idea about any of it. I had pads, so yes, I'd put one on, go to school, bleed everywhere all over my pants, come home, muck about, have dinner then have a shower and put on a new pad. I thought that's what you did, that that's all there was to it. It pays to mention at this point that these pads were small—I'm not even sure they were big enough to blow your nose with in an emergency.
My Mum would yell and complain everytime she did the washing about my undies and pants being covered in blood and how much work it was going to be to get it out. She still never talked to me more about it. Never asked me how often I'm changing my pad, nothing. Just complaining about the mess.
Within a few months of having my period, I started to stain the sheets during my sleep. As literally NO ONE was talking to me about anything, I assumed it was normal, or at the very least, no big deal. The kids at school however, well they were kids. They laughed, they teased, they stared. They did what kids do.
It wasn't until a couple of months into High School that I realised I knew stuff all about periods and how to handle them. I had stood up in class and my new friend immediately came and stood behind me and whispered in my ear that I had a bit of blood on my shorts. So we used it to get out of class and have a couple of puffs of a ciggie (as a lot of us did back in those days). I had a smoke in my bra, so out we went and off I started to walk. My friend stops and says "Hey, don't forget your bag!", I turn around and say "Huh. What for?", My friends says so that you can change your pad. I froze. I could feel blood rushing to my face. What on earth? "You did bring pads with you yeah?". No. I hadn't, am I meant to? She's saying it so casually, like it's normal. I just stood there saying "ummmm". "You do change your pads at school yeah?" I burst into tears. I was so embarrassed.
She calmed me down and we went up to the office to get a spare pad and on the way there we talked and we continued talking in the toilets. That was the day I found out that you can't just change it once a day and that how often you change it depends on how heavy you bleed. This happened in the class before 'big lunch'. By the time I was going to my last class of the day, I was back up at the office asking for another one.
A few days later and I was telling my mum that she needed to buy me bigger sized pads. My friend had told me there were maxi's, or surf boards as some of the girls called them, and the office had really cheap thick pads. They were devine! I wasn't leaking out of them and they covered a larger area, I loved them! My mum on the other hand didn't want to know. It was going to cost more money and that just pissed her off. "Well it's that or I'm going to keep bleeding on everything!"
I was told I had to use what I already had. So I did. I used 4 at a time and changed at least 3 times a day. They disappeared pretty quick. The slightly bigger pads she replaced them with weren't as good as the school ones. So I used 2 at a time and insisted to my Mum that she get bigger pads. "Think of it like trying to contain a burst dam wall Mum, what size should I be using?"
By my next period, I had the 'surf board' pads I needed.
This problem got me talking to other girls about periods. Not a lot and not in great detail, but enough so that I could try to figure out where I fit in. I was 13 the first time I tried to use a tampon. Within 10 minutes, I was bleeding everywhere. I was at the beach with my friends I had grown up with (I had my 'old' friends and my 'new' high school friends. I got out of the water and noticed that there was blood running down my legs. I panicked and said I had to go home to change. They all thought it was hilarious and said that I had clearly not put it in properly. We had a sleep over that night at one of the girls house and they convinced me to try again.
So I did and again within about 15 minutes, I was bleeding everywhere. Again, they all thought it was really funny. I didn't and I was really ashamed and to be honest, pissed off at the girls. I thought about how funny it would be for them to wake up in the morning with chook poop all over their pillows and faces. I was determined to do it—but sleep bested me. Damn, because THAT would have been hilarious.
So, I'm 13 years old, almost 14, and so far I knew that I was one of only 2 girls in year 9 and year 10 (it was a brand new school so they only added year levels as the students went up in grades) that wears 'surf board' pads. I'm the only girl known who can't swim during her period because tampons don't work. I'm also the only girl that cries from period pain. So I started talking in more detail to the other girls about it. Well, yes. I was different to the 'norm'. I had big 'chunks' that would happen during really bad periods. One of the girls in the year above said to me "Your periods are definitely NOT normal! You have to see a doctor. My aunty had problems and she has cancer in her uterus. She could die. You have to see a doctor!". It took some months of complaining and asking to finally get her to agree.
I was 14 the first time I talked to a doctor about my periods. It was really uncomfortable. I told him all about it, how heavy it is, how often I have to change my pad, how I can't use tampons, the clots, everything. He had a poke around my tummy, sat me up and said that I'm perfectly healthy. Then he pulled my Mum to the other side of the room, obviously thinking I wouldn't hear anything. He said "Ok, so everything's fine, there's absolutely nothing wrong with her. She's more than likely just attention seeking, so, from now on, when she has her period, just ignore her. Within two or three months, she'll realise she's not going to get anything out of it and she'll stop."
I remember thinking to myself, wow, hang on, I know I'm in pain and I'm not attention seeking. Mum never gives a shit anyway when I have my period. Why is he saying this? Back then, the doctors word was law.
The doctor knows, you don't, if the doc says it, then it's true. Holy snappin' duck shit. He says I'm attention seeking—maybe I am and I just don't realise. I was shocked and really upset. I thought I was really in pain . . .
A few months later, my little brother and I were mucking around, and when I say mucking around I really mean trying to kill each other—ahhh, good times. I got him into a headlock and proceeded to 'noogie' the crap out of his blonde curly little head. Now obviously, he didn't like it, so he retaliated with a swift, hard elbow to the lower stomach. I instantly dropped to the ground screaming in agony!
My Mum yelled at the both of us, and stood over me saying "I told you as he gets older he's going to fight back harder, you get what you deserve! Now cut the crap and go to your room!"
Later that night, I went to the loo and I was bleeding. I thought, this isn't my period because I just finished it last week—I was scared. I didn't tell my Mum, I figured she'd just blow it off.
I snuck out and went to my best friend at the time. She said she'd help me get to see a doctor the next day. So we get this appointment and holy shmoly, this 'guy' was an idiot! He tried telling me that I was having a phantom pregnancy and to "Go home and sleep it off until it goes away."
My friend believed him, I knew he was full of it. By the next day, the pain was unbearable and I was bleeding quite a lot. I caved in and told my Mum, she immediately call out GP and they got us in pretty quickly. He couldn't barely touch my lower left abdomen, it was too painful. I was writhing in agony and he didn't care. I asked for something to take the pain away and he said to take more panadol.
He said that we needed to go straight to the radiology clinic and get an ultrasound. Mum decided that it could wait till the next day. There was quite a large cyst found on my left ovary. When we went back to the GP, he said I needed to see a gynaecologist pretty urgently.
He said that the elbow I copped from my brother had almost certainly hit right where the cyst is and that he could have ruptured it. I was so angry at my little brother! When we got home, I went off my head at him! Then I noticed that he was actually really upset over it. Dammit....I stopped and gave him a hug and told him it was ok and apologised to him. It's no fun harassing him when he's genuinely upset and worried. We shared a lovely half hour of being nice to each other before going back to trying to kill on another.
The specialist said that there was no evidence of rupture or damage to the cyst. I asked him about my period troubles and he said that I would find big relief by using the pill. 14yrs old and on the pill....which wouldn't mean a thing....if it actually did something to help! I was at the school gates one afternoon after school and chatting away to some girls about how the pill isn't helping and how my period pain seemed to be getting worse. One of the girls said "Hey, have you used Ponstan?", when I said that I hadn't even heard of it let alone tried it, she gave me a handful and told me when to take them.
Cool, I thought, this is her saviour she reckons, so it'll definitely help me. Noooope! It didn't. I decided to go back to the GP, and tell him that enough was enough! I needed help. He wasn't even slightly helpful. He said "Lisa, this nonsense that something is wrong with you HAS to stop! You're wasting everybody's time." When I started to cry, he offered me a script for Ponstan.
When I said a friend gave it to me to try and it didn't work, he got really angry. He said to give it a go. Feeling defeated, I agreed. It didn't do anything at all.
At 15 I had left home and moved in with my 'boyfriend' (That saga is HUGE....a massive story that has too much to it to tell here and now). He had very, how can I say it—idealistic views on how females should behave and dress. He was completely disgusted by how much I bled and for how long (5 days on a good month, 7 on a bad and 6 as an average).
He insisted that I see the GP, again. This time he refused to engage in conversation about it. "There is nothing wrong so there is nothing to discuss, now, if you don't mind, I have patients with REAL problems to see". A few months later, back to the doctors I go. He was on holiday, so I saw his temp. Two pregnancy tests, both positive. My Mum cried, I laughed, I thought the dr was lying or having a joke. An ultrasound the next day proved she wasn't lying or joking. Whoa . . . ok. So that's happening.
The first thing after a lot of panic, to go through my mind was "No periods—how blissful would that be!"
I was 15, give me a break. After listening to every other single person tell me that I couldn't go ahead with it, and the father telling me he hates my guts and will never have anything to do with me ever again (hang on dick-wad. It was your stinking lie that created this situation and now YOU hate ME??? He had told me the pill would take a month to stop working. Yes I believed him. Yes, I was gullible and clearly a bit daft!!)
Throughout the pregnancy talk about my periods would come up with doctors and nurses and they would ALL say the same thing. That after the birth of the baby, my period experience would improve. They'd be lighter, they would be shorter and they'd be less painful. Now, we've already established that I'm gullible, so of course I believed it. The big day finally came, 8 days past my due date and I was terrified. So many women had been telling how bad labour is and how I wouldn't handle it because I cry when I have a period.
So yeah, I was scared. I'd have a pain and breathe through it and rub my lower abdomen, just like during a period. The midwife commented on how well I was doing considering I hadn't done any antenatal classes. I was just doing what I would do during a bad period. It felt just like one. I was in a bath at one stage and it made me so sleepy. I'd get comfy and start to doze off and then another contraction would come—all I wanted to do was sleep.
I remember trying to bang the side of the tub while saying that I couldn't do it any more. Of course the response from my Mum was, "Well it's a bit bloody late now!"
I kept waiting for it to get so bad that I couldn't handle it, like so many women had been telling me. It didn't happen. Pushing her out was a different story! That's a pain that's in a class of it's own, but still not so bad that I'd be scared of it. I did scream like a banshee, but that was out of more fear than pain. I was barely 16 and there was a brand new human coming out of me! Now like I said, I hadn't done antenatal classes, so I didn't know I had to then get a placenta out and I definitely didn't know about after labour pains—which was basically like constant bad period pains for weeks.
10 weeks after the birth of my daughter, on New Years Eve eve, I was put in for day surgery to have a curette. I was still bleeding from the birth, I was skinnier than before I was pregnant and I was very ill. I didn't really have an appetite and I was extremely lethargic 100% of the time. When I came out of the anesthetic, I asked the nurse if I was going to be ok and get better. She told me that there had been bits of placenta and membrane left behind and that it had all been cleaned out and I would be so much better. However, at the check up 6 weeks later, I was told there was nothing wrong. That it had been a waste of time but they had discovered that I had a retroverted womb (where the uterus tilts back instead of forward).
The 'specialist' also said that I absolutely HAD to have surgery to correct it. When I asked why, all he could say was, "Well, because it tilts backwards instead of forwards."
After finding out that it actually doesn't cause ant problems, both my Mum and I stated that there wouldn't be any surgery for it. Little did I know that this kind of "I know better than you" attitude would become something I would struggle with and fight with for many, many years to come.
So after all of that crap, I'm about 6 months after the curette and my periods were still hell! Getting drunk on a bad one definitely helped, not that I did it all the time. I was lucky enough that I still lived at home and my Mum helped out with stuff a lot.
So during a bad one, I might get blotto and then just flake it. BLISS. I wasn't conscious so the pain wasn't bothering me. I was about 17, almost 18, the first time I went to an ED for period pain. It was insane, the worst pain I had ever experienced (Including labour, birth AND ripping the ACL ligament clean off a knee). I told the triage nurse what was wrong, that panadol wasn't doing anything (it never ever did) and I couldn't stand it any longer.
The waiting room was empty and it was so quiet. I was laying on the chairs in the waiting room for about 2 hours by the time the nurse called me in. I was wailing and sobbing, clutching my tummy and unable to stand up properly. I got to the bed and climbed on and curled up in the fetal position. The nurse never said a word to me. Some time later I heard a doctor say "Oh for Christ sake. Just give her a paracetamol and get rid of her, I don't have the time or patience to deal with junkies right now!"
The reason I knew it was directed at me was because the only other patient there was an elderly gentleman. After a long wait, I decided to leave. Clearly no one gave a rats about me so why hang around? I can just go home to the comfort of my own bed and suffer there.
As I was just about to open the curtain and leave, the nurse came in. She looked at me like "Ha, typical". She asked if I needed the toilet and when I said no and that I was leaving, she raised an eyebrow and let out a, "Ha, of course you are."
I gave her a glare and hobbled out. I saw a clock and realised I had been there for about 4 hours. That entire time I was in various stages of sobbing, from quiet crying to outright wailing. For 4 hours and no help, nothing. I felt small and completely unimportant.
My second time going to the ED I was about 20. Again the triage nurse huffed when I said my period pain was unbearable. Again I waited for over an hour in an almost empty waiting room.
Again, when I finally got taken in, the beds were all empty bar two of them. The nurse tending to me this time seemed to be nice and considerate. I had been laying on the bed for what seemed like years, but was probably about an hour or so. I heard the nurse say to someone, "So, the girl in that bed, she really needs help," then I hear a male say, "Really? I mean, there's nothing I can do for her."
"What? She's in a lot of pain, she really needs help!" the nurse argued.
"Ha ha. Ok, so you obviously haven't dealt with her kind before. I tell you what though, I'll give her points for being original. I haven't heard period pain being used before."
The nurse asked what he meant. He responded with "Well, clearly she's in need of drugs. Her dealer has probably run out, or been arrested," he chuckled. The nurse argued that she didn't think that's what's wrong, "She's really in a lot of pain though doctor. I really don't think she's an addict!"
The doctors response? "Of course she is! She's in withdrawals! That's what happens, they can't find a dealer, they end up in withdrawals and then they come here. Ha ha, period pain—that really is a first for me!"
I had heard all I needed to hear, I was leaving. Clearly I wouldn't be getting any help here, again. It's the only hospital in town, so I had no where else to go. Just as I was putting my shoes back on to leave, the nurse came back in. She asked if I needed help and I responded with "Yes, but I'm clearly not going to get it, so I'm going home!". She looked shocked and said to me "No please don't go. I can help you. If you stay the doctor will realise that you really are in pain and we can get you some tests and find out what's wrong!"
I told her that I heard the conversation and then I said something about how she's just a nurse and without the doctors say so, she can't do shit for me. She begged me to stay, she pleaded with me that she believed me. It didn't matter, I was leaving. Why would stay when I know the doctor has already made his mind up about me and my situation. She followed me all the way outside and even grabbed me when I had a spike of pain that almost took my legs from under me. It didn't matter what she said, I was going home so I could at least suffer in my own bed. It would be 14 and a half years before I would be brave enough to go to an ED again.
At about 18, I went back to my GP, again, to discuss my periods. This time he said I needed a stronger dose of the pill. So I upgraded from Levlen ED to Microgynon. What a crock of steaming poop that was.
There was no difference at all! Well, not with my periods, my face acne however, well, it just flourished. There was a saturday beach day planned one day and I was really looking forward to it. Friends, sun, ocean and a new pair of swimmers for my little girl to show off. One thing bummed me out though. I was going to be on my period. So I decided to skip it. Now, that might seem like nothing to most of you, but I was in the generation of girls that were told to NOT do it. It was part of our HRE (sex ed) class. You know that scene in Mean Girls, where the Coach is telling the kids "Don't have sex! If you have sex you WILL get pregnant and YOU WILL DIE" (or however it goes), well that was basically the talk about skipping your period. It was the early 90's, everything was dangerous.
So my weekend was fab and I went swimming and had fun and was one of those disgustingly happy people you see on the TV. Next month my period came and it was utter hell! It was like it was getting back at me for keeping it locked up the pervious month.
The next time I skipped one, I ended up skipping the next one after that too out of fear of the hell-fire repercussion period. Then when I did let it happen, it was horrific.
The most months I have skipped is 3 in a row. I am now wise enough to know that the more I skip, the worse it will be when I let it 'flow'. Nothing, and I mean literally nothing, is worth that much pain and suffering.
So the new pill wasn't working, I had decided to go to another doctor for a second opinion. Three second opinions later and I was still stuck in a waste land of "I know I'm in pain. But I'm constantly told nothing is wrong with me, so am I really in pain?"
It was all about taking Ponstan or going on a specific type of the pill. Every other female I would talk to about my periods would always screw up their face and say that my experience wasn't normal. What does it matter, I would think, no one cares, no one believes me. I'm just the wuss that cries when she has her period, I'm the weakling.
My last conversation with my GP was when I was about 22. It was maybe the 5th time I raised it with him. Shake your head all you want, I was raised with the attitude that what the Dr said was law, no ifs or buts. I said to him "Seriously. We need to get to the bottom of this. It's not right, no other girls throughout the years have the same experience as me. Something's wrong and it needs to be sorted!". "You're absolutely right, Lisa", was his response. He started scratching around for a piece of paper. "No, this is definitely it. We are getting to the bottom of this once and for all."
Finally, I thought to myself, smiling as he continued on. "There's a woman I want you to see and she's great. She's really going to help you and then this problem will just go away. So she's a behavioural specialist . . ."
"Excuse me, what?" I interrupted him.
"Oh yeah!" he said, "She's great. So once a week for 6 weeks and what's going to happen is that she's going to retrain your brain into understanding the difference between what you think is pain and what actually is pain! In 6 weeks, you'll be just like a brand new person!".
I was truly speechless.
I couldn't believe it. Retrain my brain? How about he get his damn attitude retrained!
I walked out with the referral and while I waited in line at the desk, I ripped up the letter and put it in the bin. However, the fallout mentally from that appointment has stayed with me, even now after diagnosis. Was I really truly imagining this pain? I mean, yeah ok, I'm a little nutty by some (boring) people's standards, but am I really that crazy?
Am I one of those hypochondriacs?
A couple of periods later, I was huddled on the floor of the shower, sobbing in agony and repeating to myself over and over "I know this is real. I know this is real". But what was I to do? Move on to another doctor. That's it. There were other things that had happened with this guy that helped to cement that this guy is utterly useless, to say the least.
So, one of the things that makes me heartbroken over my experience and long trial of trying to get answers, is how it had affected my loved ones. in particular, my daughter.
She has watched me time and time again, huddled in the fetal position, crying or even screaming in agony. She was told over and over that mummy couldn't go to the hospital because they won't help her. One evening, when my girl was about 8 and a half, I had just finished a shower. I was having quite a bad period. No sooner had I just stepped out of the shower, I felt what I term as a 'fall out' of blood about to happen. Now, this happens so fast that there's no time to do anything other than squeeze my legs shut and hope to god that there's not too much mess. So my legs squeezed up so tight that not even a crow bar could prise it open and blood splattered everywhere.
It was gushing any direction it could, which was on the cupboard in front of me, all over the floor behind me, on the side of the bath and down my legs. Now having just gotten out of the shower, of course there was a small puddle of water at my feet, which now had a ton of blood mixed into it. The best thing to do in this situation is just stand there and hope that it doesn't last too long. So I'm standing there, naked, blood everywhere, in a ton of pain, when all of a sudden I hear "Hey muuuum!" and the door flings open.
I had been standing there for a bit, so my daughter probably just figured that mum was now dressed and probably just popping a pimple in the mirror. She stood there for a second, glanced at the floor, then up at me, then started to scream. I told her I was ok and to just go wait for me in her room, which was directly across from the bathroom.
I could hear her crying to my partner that I was dying and there's blood everywhere and that he had to call an ambulance and it was all chaos and I had no idea what to tell her. I didn't want her to know about periods yet! But what do I tell her after she's just seen what probably looked like a murder scene? I very quickly washed myself off, got dressed, cleaned up all the blood and took a second to try and conjure up some story. I couldn't think of anything. I could still hear her crying and all I wanted to do was to make sure she knew I was ok. That's it, I'm going to have to tell her the truth. So I did, and I was heart broken. I didn't want her know about that stuff yet, or like this. So I explained the whole thing, the uterus, the ovaries, all of it. At first she was totally grossed out, but then she wanted to know about literally everything to do with the human body. How do we poop? Where does poop come from? How do we think? What happens to food when we eat it? What are boobs made of? I mean everything.
My child was the kind that always wanted to share what she learnt, so it didn't take long for her to tell family members, as well as her entire class. This caused some people to chastise me for telling her about periods so young. I was too open or trying to make her grow up too fast. So I said to them "What would you do if your child walked in on you and there's blood everywhere and she panics and thinks you're dying?", to which they would say "You should have told her that you cut your leg shaving". To which I would say "It wasn't a little trickle on my ankle! There was blood everywhere! I bleed excessively. It looked like a murder scene in there". The response was almost always the same, "Oh don't over exaggerate!". So I chose to ignore them for they do not know, understand or believe.
So at about 22, I'm seeing a new 'doctor'. The first time I bring up my period woes, she offers the pill, we change the type I'm already on. Six months later, I'm still munted—not that I was one bit surprised by this stage. Next time I bring it up, it's getting worse, she suggests the Depro injection. A month after starting, I tell her that it's crap and I'm bleeding on and off all the time. At the end of the 3 months, she says that there's no point continuing as I had constant bleeding with severe pain pretty much the entire time. I say, "Ok, what now?", she says, "Um, well there's nothing else I can do. I could give a tablet called Ponstan. It's specifically for period pain."
I tell her that they are about as effective as using Tic Tacs for the pain, they're useless. She says with a shrug, "Well then, there's nothing I can do for you."
Defeated, pissed off and annoyed, I gave up, again, looking for answers. Why bother right? So a number of months go by and I was having a period that I believed was sent from satan himself. I was screaming into my pillow, I was in horrific pain.
It was definitely getting worse.
My partner pleaded with me to go to the hospital, as far as I'm concerned that wasn't an option. So he called the GP and got me in on an emergency appointment. When we got there I lay on the chairs with a hand cupped over my mouth to muffle my screams, my legs and knees pulled up as far as I could get them into my chest. The receptionist ran off to tell my doctor that I was here. I waited there, like that, for almost an hour. No other patients came out, there was no one there but us as it was the end of the day. She finally swanned out to get me, she didn't look or sound concerned at all in any way. I sat on the chair in her room and immediately bought my legs up. She asked what was wrong....if I wasn't in so much pain, I would had the sense to slap her with a heavy book...or a chair. I told her what the go was and that I had taken Mersyndol and it didn't even make a dent in the pain. So she said she was going to give me an injection. I still had an intense needle phobia at this time so severe that I would have full on panic attacks.
I didn't flinch when she came back with it, or when she jabbed me in my thigh. I was in that much pain I just didn't care. She turned around to dispose of the needle, turned back to me and asked how I felt. I started to speak, "Well actually it's . . ." that's as far as I got.
She snapped back at me, almost yelling, "There is no way you are still in pain with what I just gave you!"
I snapped back at her, "Well if you had of let me finish, you would have heard me say that's it's settling down a bit now!" I asked her if there was anything she could do long term for when I have my period, she said no.
When I went back out to the reception, I asked what I needed to do in order to get my medical records, they said it would cost me $90. I decided I may as well just stay where I was.
A couple of years later I started experiencing severe pain during a bowel movement when I was on my periods. The first time it happened I was scared out of my brain. I had never felt a pain so sharp and severe, not even birthing a baby was as painful. I would yell and scream no matter how I tried not to. It was automatic. After about 8 months of this (I was stupidly convinced that if I ignored it, it would go away....yes I know, I am a massive idiot!). I finally got the courage up to talk to my best friend and partner about it. It was, honestly, the most ridiculous conversation I've ever had. I don't think they really understood what I was saying and explaining. They kept saying that I needed more fiber and I needed laxatives. Noooo.
I don't have a problem getting it out, the problem is the pain that happens when it comes out. Then they would say I maybe had a hemorrhoid or polyps. Nooooo, the pain is in my abdomen. It was proving useless so I ended the conversation and decided that I needed to tell my doctor. So I'm with this woman, telling her about the painful poopie problem. When I finished she said "Yes. It's perfectly normal. Everything is all tense and tender in there, so of course there's going to be pain". I argued her 'logic' with the fact that it was a NEW problem and if it was normal, then why hasn't it been happening for the past 10+ years I've been having my periods? Her response started with "Ok, so when you have a period, the lining of your uterus,"
I jumped in and cut her off by telling her that I knew all this basic info because I learnt it years ago in high school. She looked really pissed off and snapped back at me, "So why am I having to explain this to you then!" almost yelling.
So I yelled back at her "I DON'T KNOW WHY!"
We stared at each other for a while before she finally spoke. "Honestly Lisa, there's nothing wrong with you and I don't know why you keep insisting there is! This nonsense HAS to stop!"
I didn't know if I wanted to scratch her eyes out, or breakdown sobbing. I was angry and disgusted. I stood up and told her this would be the last time she would see me. When I got out into the waiting room, my partner took one look at me and instantly knew it hadn't gone well. "What happened?" he asked when I got to him. I let lose, hell for leather going off. "That stupid bitch in there thinks it's normal to have pain so bad you almost pass out when you shit! She's a total quack! I don't even think she's a real qualified doctor", I was saying it very loudly so that everyone in the room could hear, knowing that they would know it was her because she was the only female doctor there. The receptionists didn't know where to look and people where whispering to each other. Good, I wanted the bitch run out of town.
I ended up at another clinic suggested to me by some co-workers. The doctor I saw did the usual standard crap, suggesting the pill, the depro, ponstan. I refused all saying that I had done them all. So I had a blood test and an ultrasound. No need in saying what the outcome of those was. I asked about pain management, to which I got the usual, just keep taking mersyndol when it's bad and if it's unbearable then go to the hospital. Not long later I had a pap-smear that showed abnormal cells. Within about 9 months, I was told I had to have a procedure to remove the bad cells. I was diagnosed as CIN1 and I had a LLETZ procedure (They lasered off the end of my cervix).
The paper work they gave me about the procedure and what to expect afterwards stated that it wasn't uncommon to experience heavier and more painful periods afterwards. My partner joked "What is that gonna mean for you? Do you even think it could get worse?"
I joked back that if it did get worse, he and my daughter should leave because no one should see someone bleeding that much or in that much pain. I didn't really pay much attention to it because I thought it wasn't possible.
Oh how wrong I was. My first period after the surgery was one of the most horrific I've ever experienced. I was in so much pain that I was stunned. I was bleeding so much that I had to go back to putting a towel under me in bed. My partner had a bit of a go at me on the second day of my first period after the op. He was annoyed that I hadn't hung out the load of washing I had put on that morning. I was so disappointed and pissed off at him. How dare he! Are his arms painted on? Or is it so damaging to his masculinity if he were to hang it out himself? I got up and dragged the washing basket to the top of the stairs and dragged it down them. I was only 2 weeks post op and had been told to be careful of straining myself for a few weeks. I didn't want to lift, if I did I was worried that blood would literally burst out of me, my bleeding was that heavy and out of control.
I dragged it all the way round and up to the clothes line. Bending over killed me, then stretching up to the line made me really dizzy. My second bend to pick up a piece of washing blood gushed out of me and I felt like I was going to throw up. I started crying. This was horrible and hanging these clothes out was really hard. My partner came over from the shed. He told me to go back upstairs but I refused. Screw you! You wanted me to do it, I'm doing it. I bent down again and then I felt my face go cold and I thought I was going to pass out. Just as I lost my footing, my partner grabbed me. He helped me upstairs and got me some mersyndol. For 3 more days I was like this. Even getting up off the lounge made me so giddy I almost passed out. It was so much more worse than I thought it would, or could, be. Over the next few months this kind of experience during my periods eased, but never went back to what it was before the operation.
Over the next year or so, I started to notice a pattern emerging with my periods. If I had a relatively good one (good by my standard would terrify a woman without Endo), then the next one would be bad. If I had two relatively good one's in a row, the third one would be hell. If, on a very rare occasion, I had three good ones, the fourth would have me seriously considering cutting open my abdomen and throwing my uterus in the bin. There's no way I'd even feel it because my pain was so incredibly severe.
At about 2 years post cervical operation, my usual doctor left. I was asked if I would mind seeing his replacement as he needed to get patients. I agreed and hoped it would be someone I could trust, seeing as my faith in doctors was pretty low. I had been seeing him for some months when I decided to see what he would have to say about better pain management for my periods. He said to me "Well, I could, but I'd rather you tell me what's going on. Tell me why you need a prescription for the pain. I want to know everything, from the beginning when you started your period". I was a bit shocked and stunned. I told him everything, including all the hell from doctors and the things that have been said to me and that I had googled my symptoms and I thought I had Endo.
I told him about the bitch that said painful bowel movements during a period was normal, he asked me if I remembered her name and where she worked. So I told him and he wrote it down.
He said "That is absolutely ridiculous and I hope you know that she was VERY wrong! I'm so sorry she was so horrible to you."
I felt like I was going to cry, I was also confused. I asked him what he was going to do. What pill was he going to suggest, or was he going to say I needed to go on the depro, or was he just going to say that there's nothing he could do for me. He grabbed a piece of paper and said "No. I'm not doing any of that. I agree with you, I believe you have endometriosis, so I'm sending you to a specialist."
I immediately burst into tears. He stopped what he was doing, moved his chair in front of me and took my hands in his. He asked me why I was crying, I said because he was the first person in about 16 years that believed me and wanted to help me. He was so wonderful and caring. I may have, just a tiny little bit, fallen in love with him.
He was handsome, beautifully charming, very happy and always smiling, and now here he is, believing me and wanting to genuinely help me. Sixteen years of hell and horror and sadness just unloaded all at once. He put me on top priority so that hopefully I wouldn't wait too long.
My specialist appointment rolled around and, as my partner was unable to get out of work obligations, I took my best friend with me. She had seen me suffering and getting worse for years, so she would be good for information. She'd also be able to listen as well, in case I missed anything. I got called in and we sat down and I grabbed my besties hand. I was really nervous. I went through everything, answered all his questions, I left nothing at all out, including that I believed I had Endo and I wanted the laparscopy surgery to diagnose it. He said no. "No, what you're going to do is have the Depo Provera injections". He went on to explain it. I interrupted him and told him I knew what it was and that I had already done it and it didn't work.
My bestie gave my hand a reassuring squeeze. He asked how long I had been on it for. I said only one round. He said that's where I had gone wrong and that I needed to be on it for 9 months. I said that I wasn't going to do the shots again and that after 16 years, I just wanted answers. He flung himself up from his chair so fast that his chair went flying behind him, he stood in front of me, pointed a finger at me and went on to yell, "I am the doctor! YOU are just the patient! I know this will stop your problems! You WILL do this or you can feel free to leave!"
I squeezing my friends hand so hard, I was shaking and on the verge of tears. I looked at my friend, she was livid, but also in complete shock. I managed to stammer "Well, I spose I'll do the depro agian then."
Before he had even left the room, my bestie said loudly enough for him to hear "That f***er is lucky I don't rip his throat out and ram it fair up his arse!". I was utterly destroyed. I really thought I'd get answers this time.
Three months later I went back to have the next injection. I had to do this appointment alone, but I thought—nope, I can handle this. It's not working, I'm constantly bleeding and constantly in pain, this will be easy. I was completely terrified though, that I would get the same guy and that he would bully me again, maybe even worse seeing that I was alone. Thankfully I didn't see him, another guy called me in. We sat down and he asked how things had been going and I told him about all the bleeding and pain. I then also said that I wasn't going to have the next injection and that I just wanted the diagnostic surgery. He said to me, "Ok, yes, but ma'am, it says here that you are to have 3 injections, but you have only had one."
So I thought I would just say it again in a different way. "Ok, yes, but ma'am, it says here that you must have 3 injections, which is 9 months in total, but you have only had one, which is only 3 months". I thought that maybe he wasn't really understanding me too well, so I re-worded, AGAIN, and spoke slower and put in a lot of description and explanation. I got the exact same response again. I sighed and just asked if there was any way that I could just go straight to the surgery option....I got, almost the same response from him. So I just waved my hands and said "Oh what ever then! I was stupid to think you people would actually help me!". He asked if I could tell the nurse to get ready for me. I nodded and when he left the room, I burst into tears. I was still crying a little when the nurse came to get me. As I was getting ready for the jab, sh asked if I was ok and what was wrong. I explained everything to her and she said that I should just refuse and demand the operation. I told her that I just didn't have any fight left in me.
So, within a few weeks of that 2nd injection, things were getting worse for me. The bleeding was getting heavier, longer and more frequent. The pain was insane, I was going insane. By the second month in, I had been bleeding for about 16 days straight and the pain just kept escalating. My partner desperately wanted to take me to the hospital, but I flat out refused. I would rather die in my bed in agony, than go to the hospital and be treated like a junkie again. I rand 13 HEALTH, knowing that they would say there was nothing that could be done because the Depro just had to run it's course, and that was exactly what I was told. My partner called my GP anyway and had arranged an appointment for the next day.
When I got there and told him what was going on, he was so upset for me. I looked utterly horrible. My hair hadn't been brushed in about 10 days, I was wearing my most daggiest home clothes I had, my eyes were red from days and days worth of constant crying and my skin was ashen. He told me that when I went back to the specialist I was to refuse to have another injection and if they insist, I was to call him straight away. He made note of when the appointment was and assured me that I would leave there with the surgery booked. I ended up bleeding for 21 days straight. I went back for round three with these bastards, partner in tow, determined that THEY were going to listen to me for a change. We walked into the room, sat down and the female doctor said "So, would you like to tell me what's been happening and how you are now," and I immediately burst into tears.
I was trying to talk, but it was inaudible, I was a complete mess, nothing like I had planned and psyched myself up to be. My partner took over talking and as he did, the doctor moved her chair over to me and held my hands, rubbing them while she tried to calm me down. When I had stopped bawling enough to talk she asked a bunch of questions. As she started to write stuff down, I blurted out that there was no way in hell that I was having the last shot. She agreed. So I then took the opportunity to say that I believed I have endometriosis and I wanted diagnostic surgery. She agreed, again, "Oh no! There will be no more depro injections for you. It's very clear that it's simply not working at all. And you will most definitely be having a laparascopy and I'm quite confident you will be diagnosed as having endometriosis."
Well, that was all I needed to hear to send me back into floods of tears. To say I walked out of there on cloud nine would be an understatement. Finally, onwards and upwards, instead of just onwards and being dumped like trash.
Surgery rolled around and I could barely contain myself. Of course only a very select few that I was happy about it. Anyone else would just think I was a mad hypochondriac. As soon as I was capable of asking questions after the operation, I did. I wanted to know if I was right. 16 and a half years of hell and no one believing me had caused doubt, what if I was the attention seeker that so many people thought and had told me I was?
I cried happy tears of joy when a nurse told me that there was endometriosis found. The surgeon came by later and told me that there was endo found ant that my uterus was fused to my pelvic wall and my left ovary had been twisted and fused to the back of my uterus. At my follow up I was told all this again and then there was only a very minimal conversation about endo and my future. The specialist asked if I was wanting to have more children one day. I was 30, just about to turn 31, I was definitely wanting to have more children one day. He said that I should start immediately. On the endo front his exact words to me were "So you endometriosis was removed, we unstuck you uterus and ovary. But it all looks really good in there and you have nothing to worry about from here on out. In really reare cases symptoms can return in 5 years, but honestly, you don't have to worry about that. You can just go and live your life". What I didn't know is that this knob-head was either lying through his arse OR that he really didn't have the faintest idea of what he was talking about.
My first two periods were wonderful. My friends that I was more strange than normal talking about having my period and how great it was and how I thought I could do anything. Lisa on her period AND happy, that was definitely different. It was short lived though. Within 18 months of surgery it all went straight back to how it was before. I was devastated to say the least. By the time I hit about three years post surgery, I was worse. My period was now irregular, something that never happened in my entire menstruation history. I was having very severe period type pain outside of my cycle, sometimes so bad that I would fall to the ground, crying, yelling and gasping. I was trying to ignore it, having just moved back to Perth, I just wanted to get my life goals on track and started, but it was getting worse and worse. So I did some reading up on the net and I found out that in fact, approximately 25% of women have symptoms return and/or worsen within 3 years of diagnostic surgery. I was so pissed off! Like I said, Dr Knobhead was either lying or he actually believed the bullshit he spewed at me. So clearly I needed to go to a GP, ask for a referral to a specialist and start this whole shitty process again. I thought that at least it would be so much easier this time around, given that I already have a diagnosis. I just needed the endo removed again. Nope, wrong. Straight up, the GP I saw said he wanted me to go on The Pill—are you effing serious I thought? So I did for 3 months and when he said that he wasn't sure why I needed to see a specialist again, for something I had already had surgery for, I thanked him for his time, walked out, knowing that I most definitely wouldn't be seeing him again.
I moved on to another GP and after some initial problems trying to get him to understand the full extent of my pain and giving him my past medical records from Queensland, we decided that there was no point putting me on any kind of 'treatment' and that a referral to a specialist was the only way to go. We also discussed pain management options. In the space of about 8 months I climbed up the pain killer ladder, starting with Naproxen, then Tramadol, the Oxycodone and then finally oral liquid Morphine. I was petrified of my body developing an addiction, but at the same time, was desperate for pain relief. My pain had become daily and so severe that not even Morphine touched it. I finally got the specialist appointment after waiting almost exactly 12 months.
It was suggested that I try a drug called Zoladex that would chemically force my system into menopause. I refused. Then she started to talk about the Mirena.
I told her that I had already decided I would try it, but only once I had another surgery. She asked why I believed I needed another operation and I swear to god I wanted to punch her right in her young not yet wrinkled neck to shut her up. I instead pointed out all the facts of my current situation. She said she would quickly consult with her superiors and when she came back in she said "Ok, so we're going to go ahead and book this surgery for you right now". Oh yes! Awesome! The surgery was in about 6 or so weeks time. I had to have an ultrasound before the op. There were concerns about endo affecting my bowel. This ultrasound was one of the most painful things I've had to endure.
There was a stuff up on the paper work, I was supposed to be given some bowel prep (really horrible stuff that makes your 'pipes' empty so they can be viewed better when having an ultrasound), but there wasn't any. It didn't matter anyway because at my pre-op appointment I was taken off the Morphine and mersyndol that I had been taking (they were replaced with some other medications recommended by a pain specialist). Now, my mersyndol usage was up to about 10 a day (this is really dangerous, but I was desperately self medicating, but honestly, DO NOT ever take that much of any thing, EVER). I had gone through almost 3 days of withdrawals from the codeine and that was pretty good bowel prep as it turned out. So the ultrasound was internal and pretty damn painful. I was wincing and whimpering. Then the radiologist said she was going to start looking at my bowel. What? That hadn't already been done!
The lady apologised for the fact that I wasn't told that I should take some type of analgesic for the pain. She said that it was going to get worse, and holy hell, she wasn't lying! I was bawling and clawing at the wall and almost yelling. The two ladies in there were so upset they themselves were on the verge of tears. It was horrific, but at the same time, necessary for the surgeon. I hobbled out of there crying and told my partner that it was one of the most brutal things I had experienced.
So, the surgery day arrived and I was talking away to one of the nurses ans saying how silly I think it is that there was only one hour allocated for it. I told her I knew that it would be longer and that for the last week or so I had a distinct gut feeling that it wasn't going to be straight forward and that there'd be some not so good news. She said the same thing everyone else did "Oh it's just nerves, you'll be fine". I drifted off to sleep (thank you Temazepan!) and got woken up to go off to the OR. Next thing I knew, I was in a room with no one in sight but a nurse.
Then, all of a sudden, I remembered being told that I was staying in over night. I was not happy! I'm not good in hospitals, but I'm also the kind of person that if you say "I'm going to walk over to the left" but you then go right, I get confused, worried and uncomfortable. I don't like it, make a plan and stick to it. So I was immediately stressed and panicked. No one had called my partner and no one could tell me anything much. So I called my other half, told him where to find me (he was worried to the max because it was 3 hours after he called and I was just going in and he knew nothing at all), tried to reason with the nurse that I could go home now.
She laughed and said "Yes, you were quite vocal about saying that you were fine to go home. You asked for some food so you could prove that you were fine, but you're not going home tonight, you could even stay tomorrow night too". Oh HELL NO, I said to her. They told me it was day surgery, I wasn't mentally prepared for a stay. The surgeon came the next day and boy did she have some info for me. The 1 hour operation turned into about 2 and a half hours and most of that was spent removing my bowel, uterus and left ovary and tube off each other. To quote the doctor, she said "They were all fused to each other in one giant mass of organs and endo". She said that my left side was covered in endo, but not as much on my right side. She also said that there was endo on my bowel. Then she said I needed another operation to remove the endo on the bowel and to remove all the disease in my pelvic cavity. The implantation of the mirena went well. I talked to my GP before my follow up about his thoughts on if I was to ask to have my left ovary and tube removed.
The thought process in my head was that this second surgery, 4 years after the first, things were significantly worse. It's also the second time that my left side was significantly impacted as well, so maybe if the left ovary and tube are removed, that might help in reducing complications, and possibly pain related issues. It would be one less thing getting tangled in a mass of endo and organs. My GP said that it wasn't a silly idea at all and that I should definitely bring it up with the surgeon at my follow up.
The follow up was 2 months after the operation. The mirena was messing with me terribly with constant cramps that felt far too similar to labour pains for my liking. On the day of the appointment I had been bleeding for 23 days, breaking my 21 day record on the depro. We talked about the endo and where to from here. She said that I would have to see a bowel surgeon and that I had to really pay attention in that appointment because it was major stuff. She said "If this guy says he can't do it, then it can't be done. But he will be really straight with you, so take notes and pay attention". Yeah ok lady, I don't need anymore anxiety over this!! I told her the Mirena was shit, I was on the 23rd day of my current period and that I wanted it out.
She asked me to persevere as long as possible as it can slow the growth of endo. So I pouted, gave it a thought and decided to try to stick it out a little longer. The I asked her about removing my left tube and ovary. She said that it was actually a responsible idea, I asked if I could record her saying that because no one would believe that someone said I was responsible. Of course, the cracking of jokes was to cover the nerves.
So she then went through her side of the operation and how the Endo surgeons and Colorectal surgeons (or butt surgeons, as I call them) work together kind of like a 'tag team' for the operation. It would be another 5 days until my period stopped, taking my record to 28 days of non stop bleeding. Then 3 days later it started again. Oh fun times.
I ended up not being able to take the Mirena for too much longer. I booked in at my GPs clinic, but as he was booked up for a while, and I just wanted it out, I let them book me in with another doctor. The day finally arrived and I walk into this room with this woman and she immediately started trying to talk me out of it. I had ducked into the loo when I arrived, when I came out she was waiting for me, I didn't get to bring my partner in. At first I just said that I was certain I wanted it out. The bleeding was constant and at times I was certain I could feel my uterus contracting, it was horrid. Then she starts going on about the surgeon and how she didn't to step on her toes and I should have bought confirmation from her—it was ridiculous. I started to get panicked and thought I was going to end up in full panic attack mode. Instead I let myself get angry and I said to her, "My surgeon already knows I want this out, she's perfectly fine with it. This is my choice and NO ONE will talk me out of it! I want it out and I want it out now!".
She started to talk, "Are you on the pill as well? Because you really should be on the pill with the mirena. I don't understand why that hasn't been done. So maybe we could put you on . . .", I cut her off and said "NO! I'm sure that the gyno SPECIALIST knows exactly what she's doing. I AM NOT going on the pill and I AM NOT keeping this thing in me any longer! If you won't do it, I'll find someone else!". "Ok then, we may as well get you into the room and do this then."
She was clearly very unhappy and pissed off, if only I gave a shit.
I also had an MRI. Not fun, I have to say. It's not the worst, but it wasn't great. My back and hips don't do well being rigid in one position for too long.
At the end of the 45 minutes, my right leg was starting to go numb and my hips were burning. The MRI showed that the endo on my bowel was close to my rectum, but not so close that it was going to problematic to remove. It showed, of course, extensive endo on my left side, but also more than was originally thought on my right side. It also showed that my uterus was pulled down and stuck to my pelvic wall so much that my Pouch Of Douglas was missing. Then it also showed that my bowel was stuck to my uterus—again. Only four months post surgery.
To say I was upset would be a major understatement. My butt surgeon appointment was a week later. I was so nervous and I was a pure bitch because of it. I was told that from the MRI, it looks like the endo has infiltrated my bowel which means that it couldn't just be shaved off. It would require a resection, which is exactly what you are thinking it is. My Grandad was a plumber, so I told the doctor I completely understood because it sounded like re-sectioning a pipe, kind of. The butt surgeon is going to have to remove the section of poopie-pipe with the endo on it, then they'll rejoin it. I will have to have a colostomy bag temporarily while the bowel heals. All sorts of things could go wrong, I know they told me and it is recorded, but I kind of hazed out. I was having a realisation of how huge this surgery will be. I had a bit of a funny time for a few days after the appointment. I was all different colours of stressed and scared. I calmed myself down and now I just don't think about unless someone brings it up....or I write a small novel for my friends blog about my endo hell..... Instead I am just waiting until the time arrives, which will be in a few months.
I know this is very long, but I feel I needed every nook and cranny of my experience out so that people can have a very precise look at what it can be like. I can't say that how it all went down for me was rare or just a lot of bad luck, because it's not. The things that happened to me, were said to me or said about me, they have happened to so many. So many women gone through very similar experiences. The current estimated number of sufferers in Australia is about 550,000. Wow. That's A LOT of women that have been shunted, shafted, lied to, rejected and basically treated like shit.
The national average time for how long it takes to get diagnosed is 7 to 10 years. Sadly, the stigma and mis-information doesn't go away after being diagnosed. Women are losing jobs, friendships and partners because of this disease. So many women keep their condition to themselves, only letting a very select few know about it. They shouldn't feel like they have to in order to avoid comments like "Oh it's just a way to use your period as an excuse", "So why don't you just have a hysterectomy and be rid of it?", "Oh I know a chick that had that. She *insert ridiculous cure claim here* and now she's fine now", or any number of the stupid and ignorant things that people throw at us.
There is no cure. No cure for Endo means exactly the same as it does for any other incurable condition, but for some reason, even though you've said there's no cure, someone will ALWAYS pipe up and say that you should have a hysterectomy. For some reason, they obviously don't believe you.
Our treatment options are pathetic. It's the same shit just given in different ways. Here, have some hormones to help. Oh, that didn't work....hmmm, Ok, here, take this hormone in this way instead....and so on and so on. It's ludacris! If it's likely that you'll be a regular for surgery, at some point, a doctor will pipe up and say that you've had too many and can't have any more. So then you're just left to suffer.
It is so much more than what people think and I for one am sick and tired of trying to nicely explain things to people. I'm trying to think of new ways to deal with them. These ideas include having little laminated pieces of paper that have questions and answers written on them so I can had that over and that way I don't have to constantly be saying the same thing over and over. Another idea is to get business cards that have website addresses on them so people can go look it up themselves because they obviously are having trouble doing it them selves.
I really hope I get to see the day when endometriosis is common knowledge and people don't treat you like you're lazy or a hypochonriac. I also hope I get to see some really great medical advancements in the treatment/management of symptoms and a dramatically shorter diagnosis time. Of course I want to see a cure, but with the pittance that funding gets, I think that could be a very long way off.
I'm Lisa. And I have been through hell and back, living with a condition that has caused both me and my loved ones a lot of suffering. I am still suffering, in many ways, at the mercy of endometriosis. My story is not a one off, nor is it rare. My story is one of hundreds of thousands. I am but just one face of this disease. I want to be heard. I want to be understood. I want to find a way to get over the wrong done by me at the hands of medical professionals that I had trusted. I want a better future for women with endo, the women now and the many, many more to come. I want to live with no inhibitions. I wish.....for something that will not happen for me.....a cure. So instead I will continue to live each day fighting. Fighting to get through the day. Fighting to be social. Fighting to keep the house maintained. Fighting to try and help spread awareness. And fighting to not let this disease get the better of me.
I'm Lisa. And I'm not as ok as the people around me think I am. I am sick to death of putting on a mask and saying that I'm ok. I'm not, but I won't let endo bring me down any further. I refuse to sink and I WILL fight like a girl.