It's been a while!!!

Hello everyone!

Wow, it's been a long time since I was on here last! I've been meaning to write an update for some time now but things have been unbelievably stressful & busy, & I just haven't had time. Alot has happened in the last few months, & I have had alot on my plate. Many things haven't gone as planned & there have been alot of unexpected things that have needed to be dealt with. So this is going to be a bit of a long one today as I update you on what has been happening!

Firstly, a health update. Things haven't been great health-wise, & I've been finding that I'm struggling more as time goes on. I'm finding that most of the time I'm exhausted by simple tasks, & pain will often stop me from doing things. For a while I've been trying to fight off a rather nasty kidney & urinary infection, & have had several courses of strong antibiotics, which haven't helped. My new GP has made the decision to refer me to a urologist, as he feels that this needs to be looked into. One of his concerns is that this could be endometriosis related. Due to the fact that I have already got endo on the outside of my bladder, he is worried that the endo could well have penetrated inside my bladder, & also possibly be spreading to my kidneys & urethral tubes.

I've got an appointment with the urologist in March (it was originally scheduled for this month but it clashed with another appointment). Hopefully this will lead to some answers. Secondly I've been given a referral to pain management. The purpose of this is mainly to discuss other ways that may help me to cope with the pain, such as nerve blocks, acupuncture & therapies. From a medication point of view, my GP & myself are happy that I am managing my medications fine, as even though I am on alot of very strong painkillers, that I know what works for me.

I've also been put back under the care of the bowel team, for further investigations & possible treatment. During the colonoscopy I had a few months ago, it was found that the endo had penetrated into my bowel. More tests are needed to see if there are any other problems lurking, & decisions need to be made on the best course of action.

In myself, as I said before, things seem to be taking it's toll. I've noticed my stomach hurts more, & this urinary/kidney infection has been taking its toll. Simple tasks tire me out & I often need to sleep for long periods of time.

As for a general life update, things have been pretty hectic. Sadly, for several reasons, me & my man had the hard decision of postponing the wedding. Because neither of us are very well, it was too much strain to deal with at the moment & we both decided to wait until things have calmed down. However we're still very happy together & I still feel very lucky to have him in my life.

Christmas was a very busy & stressful time. Over the actual Christmas period, we had a lovely week up North with my family, & visited all of our family members as well as making lots of memories. Christmas day was particularly important this year, as it was probably the last Christmas I would get to spend with my Granddad.

The big stressful part came after that week- we had to go & spend 2 weeks with my mans family, which neither of us enjoyed. I won't say much about it but needless to say there are certain things that really wound us both up, & some people need to realise that they are not the only ones with lives to lead! Much of the visit was tainted by nastiness, backstabbing, arguments & uncalled for behaviour, & getting home was a huge releif!

Now we are in 2015, most people have made their New Years Resolutions (& probably broken them). It sounds strange but this year I didn't make a New Years Resolution. This wasn't through fear of breaking it or not being able to carry it out, but because none of us can forsee what life has in store for us. I just want to be able to take things as they happen. I have plans for things I want to do, obviously, & with a bit of luck they will happen. But as 2014 proved to be unpredictable, I want to be able to just take things as they happen.

So there we have it! I hope you all had a lovely Christmas & here's to a happy new year!!!

Jes xxx

Endometriosis- an update

Hello everyone,

So as some of you may have seen in previous posts, I had a meeting with the bowel & endo specialist on Wednesday (The same one who during our last meeting was totally unhelpful & was the cause of that very depressing post I wrote after). I did not hold out much hope for this second meeting- & it turns out I was right not to. The only reason I was seeing him was because my GP had written a strongly worded letter telling him that I needed to be treated properly.

I am not a medical professional but I know when I am being fobbed off. He obviously hadn't read the report from my surgery as he commented "Well it can't be the endometriosis causing the problem as we did remove some of it & it obviously hasn't helped". No, they removed a tiny amount for biopsy as it was TOO DANGEROUS to remove more (due to bleeding, my oxygen levels dropping ect). He avoided discussing my questions (such as what treatment is there?) & told me he was just going to refer me back to my GP who could decide my treatment. What a nice, helpful doctor!

So meantime I am stuck with no end of problems, I am not ovulating so I don't even know if I can have kids, I am in constant pain & now have the stress of waiting. I know my GP will not be happy with the way I have been treated by this particular doctor (again!). She has been fantastic through all of this, & I know she will do everything possible to get me the treatment I need. But in the meantime I am still suffering & it isn't fair.

On a more cheerful note at least now I can say that hopefully I will be referred to somewhere that I can actually get treated, & until then I will keep my chin up. I am still pretty poorly from my chest infection, but it is very slowly getting better (finally!) & am just taking each day as it comes.

On a slightly different note I want to say thankyou to someone. I am a member of the Health Unlocked Endometriosis UK support forum. Its basically a page where women who suffer from endometriosis can go to get advice, share experiences & generally support each other. I won't mention names but there is one particular person who I have been chatting to for a while now, & consider her a friend. Every day I always get a message asking how I am & how I am feeling, & its just nice to be able to chat, talk through the ups & downs, & to help eachother out. So thankyou :)

Hope you all have a good week. I'm doing a few new posts this week so watch this space! Thanks for reading! Xxx