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.