Quick Update

It's all a bit mad at the moment as we're in the process of moving house! I feel a bit rubbish because I'm not really feeling well enough to help with a lot of the packing and won't be able to do all the heavy lifting and heavy cleaning etc which needs to be done in the coming days.

I saw my gynae consultant last week and he thinks that the reason I'm having so much additional pain during my period is that I have adenomyosis as well as the endometriosis. The good news just keeps on coming! He also referred me to a gastroenterologist to help with my bowel issues so I've got a colonoscopy to look forward to on Tuesday. I saw my GP as well this week and he thinks I have a slight spinal problem where I keep trapping nerves in my back. All this and I'm only 20! 

I've no time to write more at the moment but as usual my head is spinning with ideas that I need to get out there so expect another update very soon!

Endo at Work.

I'm having a few problems with work, mainly because my manager is being not very nice. He rejected all of the Occupational Health adjustments, and then made some highly inappropriate suggestions of his own. 

Basically, or not so basically... The latest Endo I had removed was from my bowel tissue, and since then I've had 'urgency issues' where I pretty much get a window of just under a minute to get to a bathroom, otherwise I'm in excruciating and unbearable pain- meaning I would have about 10 seconds to explain to a customer I would need to call them back. Bearing in mind this would probably only happen once a day, maybe twice, and had been okayed by Occupational Health, my manager said this was in no way acceptable and would affect his figures i.e his bonus! He went on to say there were no adjustments that he could make, and that it was up to me to sort myself out. He said that the doctor mustn't understand that I work in a contact centre when he said I could return to work. I said that I had explained that to the doctor, but my manager just kept saying it wasn't acceptable.

My manager then said that it was mine and the doctor's responsibility to get me back to work. He asked if the doctor could give me something to block my bowel. When I said that this would probably make my issues worse, he said:

"Can the doctor not arrange for you to have a colostomy bag?"

Everyone I have spoken to about this since has been outraged, and to quote my lovely Grannie, "What a horrendous, wicked suggestion!"

He then said that I needed to get timescales of how long this would affect me from my doctor- as though I hadn't already asked this?! I explained that there were no specific timescales and that the only thing we could do was wait. I said this was why I had asked to be referred to OH- so that we could make some adjustments for me to come back to work. He said I needed to ask again.

I have been re-referred to Occupational Health, and have spoken to my doctor in the meantime. My doctor was furious at what my manager had said, and very sympathetic and nice to me. He said he had no idea when, or even if, my bowel would return to normal, and the only thing he could suggest is further surgery, but this would likely aggravate it even more. We just need to cross our fingers and hope that my body will heal itself.

I am currently waiting for my OH review. I don't think my manager understands that I am under Disability Discrimination Act, or that he has to arrange reasonable adjustments, so am trying to think of a way to get it out there without sounding condescending or confrontational. It may be best if it comes from OH, so we will see what happens in my next  appointment!


I just can't believe that someone can be so cold-hearted- he surely must have seen in the last OH report that Endo is a serious condition which will affect me for my whole life?!

In other news, I have had a horrible cold all week, and have now lost my voice :(

Things can only get better?

Are you okay?

Are you okay? How are you getting on? Bearing up, are we?


I hate those sorts of questions. Really, really hate them. What I want to do is turn around and say 'No, no, I'm not bloody okay!' I'm sick of the pain, sick of worrying, sick of other people worrying for me, sick of being tired, sick of missing out on things, sick of not being able to look after myself, and most of all, I'm sick of being such a cynical bitch. Of letting it all get to me when I know I should be fighting against it. Of having such a defeatist attitude sometimes. 


I'm sick of it ruling my life, making my choices for me, stopping me from doing the things in life I most want to do. I'm sick of not feeling sexy, feeling too nauseous from all the medication, too tired from doing nothing. 


I'm sick of it messing with my emotions, sending my hormones crazy, bearing down on my relationship.


I'm so angry. With the people who mis-diagnosed me. With the people who judge me because they can't see my pain. With the guys that I slept with who didn't care or recognise that I shouldn't be in that much pain. With the world for not knowing more about it, for being more preoccupied with stupid cosmetic things rather than finding a cure. With stupid people who try and sympathise when they have no idea what it's like.


I'm sick of being angry, being cynical and letting it define me. But I'll tell you, most of all, I'm sick of being sick.

What next?

I'm waiting for my next follow up with my gynae consultant on 1st May.  I'm feeling pretty rubbish at the moment, and can't help but think 'What next?' What's the next thing to try, the next thing to mess around with my body, and cause havoc.


During my 3rd lap...Actually, I think I've only mentioned my 2 most recent laps here, so just to fill you in, the first one was in an NHS hospital, under a gynae consultant with no specialism in Endo. He couldn't find anything, so packed me off home where I waited another 2 years to be taken seriously again. 


So, during my 3rd lap, I had the Mirena coil inserted. I'd heard mixed reviews, but it seemed as though it could be really beneficial in both stopping periods and helping to prevent the Endo coming back. I hoped that this could be the case for me, but does anything ever go how you want it to? I spent the next 7 weeks in increasingly agonising pain, with everyone telling me it was just 'growing pains' because my uterus had been underdeveloped. I later found out that my uterus had been rejecting the coil, spasming in a sort of 'mini labour' for weeks on end. When I finally got it removed, it was partway down my cervical canal. 


That really, really annoys me. The fact that I was in so much pain, and I knew something was wrong, but no one would help me. Don't I know my own body better than anyone? Don't I know what level of pain is acceptable? I very much appreciate all the hard work the gynae surgeons/ consultants/ nurses do, and I know most of them have an awful lot of experience in helping women through this, but really, does this qualify them to tell me that they know my body better than I do?


So here we are again. 2 days after I had the coil removed I started bleeding. I was expecting to have a very painful first period after the coil, but nothing could have prepared me for the days that followed. I spent 3 days rolling around, literally rolling around in pain on a cocktail of strong Co-Codamol, Tramadol, Diclofenac & Buscopan, supplemented with as many hot water bottles as I could get my hands on. Adam was at work for those 3 days, and each lunch break, he rushed home to change my hot water bottles, make sure I ate something and took my painkillers. The 4th day, I couldn't bear it any longer, and we were advised to go into A&E. We got a taxi there, and the taxi driver clearly thought I was in labour. As we got to the hospital, he said pretty nervously, 'Straight to Maternity, is it?' I would have laughed, if I weren't already moaning in so much pain. 


I have to say, the A&E nurses and doctors were fantastic. Within 2 minutes, I'd been assessed by the triage nurse, and was on a bed, in a gown, being given a morphine injection. They transferred me to a ward later that day, and until I stopped bleeding and having pain, they just dosed me up with morphine every 2 hours.


Now, 2 weeks later, I'm having a similar kind of pain- although not as severe, that I can only assume must be me ovulating. By no means at all, do I have a low pain threshold, but there is no way that I can put up with this kind of pain every 2 weeks, as well as the usual constant pain. So what next? 


What are the options? Well, I'll have to wait until 1st May to find that out. But I am sick and tired, sick and tired, sick and tired of having things mess with my body and my hormones. I'm sure many of my fellow Endo ladies feel the same, and I really, really hope we manage to find a decent treatment sometime soon. For the sake of me, and every other woman out there.

Working Together to Get Better

So he came back at 3.10am, and surprisingly seemed quite sober. He must have walked it off! I'm actually feeling a lot better now. We had a talk when he got in and talked about the way we were both feeling. Had lots of cuddles and enjoyed a really nice, peaceful day yesterday. I'm quite glad I got so upset and angry. It seems to have jolted us both into realising that we need to be working together against everything else, rather than against each other.

I can imagine that Endo causes so many relationship problems. It's not fair in the slightest that we have to cope with this as well as everything else. But I think for Adam and I at least, it's making us stronger.

Over 3 Hours Late

I know it's unfair of me because he doesn't go out with his friends so often, but I'm really, really upset. If in the first place he'd said to me he was staying out all night, I wouldn't have liked it, but at least it would have been the truth. He promised me he'd be home by 11.00pm for our special night. I got a call at 10.55pm saying he was going to stay out a bit longer but would be back by 1.00am, then a call at 1.00am saying he wanted to stay out later but would come home anyway. I called at 2.00am and he hasn't even left town yet- it takes at least half an hour to get home. I know I should let him have his fun, but I feel as though he can be so selfish when he drinks. He doesn't do it often, and definitely can't handle his drink, but he just doesn't seem  to be thinking about me at all.


I've had a really crappy night and been in tears for most of it. I just needed him to be home when he said he would, just to give me a cuddle. So much for our quality time together...

The Curse of Endo

Hi all,


Some of you may be Endometriosis sufferers, some of you may never have heard of Endo. If you haven't heard of Endo, please excuse my rudeness for not writing a detailed description of what it is. For the sake of my sanity, as I have explained it so many times over recent months, please check out Wikipedia, or www.endometriosis-uk.org . Suffice it to say, that Endo can be a horribly debilitating condition for women. I wouldn't wish it on anyone, and I really do wish that people knew a bit more about it. It gets me so angry that even the spell-check doesn't recognise it!


As an early teen I had a lot of symptoms. From starting my periods at the age of 10, they were heavy and painful. This was never really investigated so well. I have vague memories of being put on the pill and being prescribed drugs like Mefanamic Acid. Nothing really helped until I had the contraceptive implant (Implanon) put in. This stopped my periods completely and all seemed well. I then started to get pelvic pain and pain during sex. It almost makes me cry when I remember talking to my GP about this. He wasn't an old stuffy doctor who didn't know that Endometriosis hadn't been 'invented' yet. He was a young, male doctor; maybe 5 years out of medical school. He was very dismissive of my symptoms and told me to try 'more foreplay', and to relax. Incidentally, I had to see this GP earlier this week, when no other doctors were available. He is still as unhelpful as I remember and I hate to think how many poor girls have gone undiagnosed because of him and his patronising manner. 


I was finally diagnosed with Endo a month after turning 20, in January 2012. 


Since then:


- 1 x laparoscopic removal of extensive adhesions and mobilisation of bowel.
- Got result of MRI showing Endo hiding behind my uterus and penetrating my bowel tissue.
- 1 x laparoscopic excision of Endometriosis.
- Mirena coil inserted.
- Pelvic pain worse and problems with bowel.
- Mirena coil got stuck halfway out.
- Mirena coil removed. Pain much better.
-  First bleed since removal of coil, most agonising pain to date. After 3 days rolling around, literally screaming in pain, was taken into hospital, dosed with Morphine and let out when my period had stopped.
- Ongoing bowel problems, constant nausea.


It's not just the physical symptoms of Endometriosis though; sometimes the emotional upheaval that comes with it all is just as unbearable. 


I can't bear the idea of not having children. I want it so, so much, and selfish as it sounds, I want my own children. I hate it when people utter those standard words, 'There's always adoption.' It makes me feel selfish sometimes, but I can't help it. Those words seem so cold and callous to me, do people really think that the idea of being able to adopt a child is the same as carrying your own baby for 9 months and giving birth. Of course these children need families as well, and that's why I feel selfish. But I want my own babies, I truly do. I find it so hard when I see people around town who don't seem to show any care or affection towards their children. Sometimes I see people actively bullying their children; one woman on the bus today was saying to her child, 'Nana doesn't listen to ginger haired girls,' and then trying to bribe her into sitting next to her. It's not fair, it really isn't. So little is fair about this world, but this upsets me so much. People don't realise how lucky they are to be able to have children.


My fiance, Adam, is truly wonderful. He really is. Every other guy I've ever been with would have run a mile, but he's stuck with me through everything. He's been without sex for months on end with no complaint, taken over looking after the house completely, and looked after me so well. But I can see him struggling too. He's been so distant lately, and although he's still doing everything, I can see him gritting his teeth and getting annoyed at things. We've not spent much time together doing the things we enjoy recently, and that's because I haven't been able to. But that seems to be taking its toll. He's getting anxious about other things as well. His Mum hasn't been well recently- she had to go for a colonoscopy and an endoscopy, and now keeps forgetting to make an appointment for the results. He's also feeling rubbish at work. He hasn't enjoyed work for a long while, but it really is getting him down now. 


We talked about this a couple of days ago now. We never, ever used to argue about anything, and seem to be arguing a bit over the last few weeks. The upshot of it is that he's finding that doing everything around the house, working full time and everything else too much to cope with. I know he's tried so hard to manage, and did do for a few months, so I do understand how he feels. The problem is, in my current state I'm finding it hard to do any more than a little bit around the house, and there's not a whole lot I can do to help improve his situation. I've suggested getting a cleaner in to help for a few weeks, but he doesn't want to, and we can't really afford it, as I'm now only getting statutory sick pay. I hope the talk helped us. I did a lot of crying and a bit of shouting about how I was sick of us seeming to fight against each other instead of working together to fight against the Endo. He seemed scarily distant a lot of the time, but reassuring at the same time, saying that this was just because he was so stressed out. The thought that he would leave me terrifies me. I know this is irrational because he's always reassuring me that I'm the one he wants to spend the rest of his life with, but I honestly couldn't do this without him. I think I'd just give up if it weren't for him being here.


The last couple of days have been a bit better; I've made more of an effort around the house and in general. Last night we had sex with almost no pain for the first time in ages. Tonight I feel a bit rubbish again. He's out with his work friends for someone's leaving do. He had promised me he wouldn't get drunk and would be home by 10.30-11.00pm at the latest. I made him a lovely meal before he went out, and was hoping that we could have some quality 'adult time' again when he got back. He seemed happy enough with the meal, but rejected my advances earlier this evening, saying he wasn't in the mood quite then, and we'd wait until later. I felt a bit rejected- this is the first time I've instigated sex in a long time, due to the Endo, but decided to brush it off and look forward to him coming home. At 11.00pm I got a call from him saying that he had already had 5 pints (his limit is 2, then he's definitely drunk), and was going to stay out until 1am. 


I appreciate that it does him good to get out of the house and be with his friends, and maybe part of it is that I'm jealous that I can't do the same. But I can't help but feel so unwanted sat here at home on my own. I'd put on a nice bra and knicker set, and now I just feel even more unsexy than ever. After months of not having sex because of the pain, I had hoped for a bit more enthusiasm from him.


This is the thing I hate most about Endo. I never wanted it, I never asked for it, but it seems determined to ruin my life for me. Hopefully I'll be feeling a bit more upbeat in the morning, and ready to battle with it again, but for tonight I just can't help feeling low.