Hello beautiful ladies and gents! I went a little off the radar again and apologies for not keeping you all updated. I lost faith in the blog and wanted to completely stop writing because I felt it wasn't helping myself let alone anyone else. But, I am here and I am carrying on. But like I said in my last post , I want to take things back to basics now and find the enjoyment in writing again - instead of feeling under pressure to get lots of posts out constantly. You must get fed up of me constantly saying how much I don't want to write but I find it really difficult sometimes. I was never one of these people to sit on forums or Facebook groups talking about my endometriosis with others because it never helped me emotionally. In fact, still now, I find reading constant posts on Facebook and Twitter etc just wind me up. I know what works for some doesn't always work for others and I believe that to be very true when it comes to talking about this disease also. I love reading people's stories, how they discovered they had endometriosis, what life is like with the disease and what the future holds, but when it's constant talk about something so horrible, well, it just gets me down. But, because I've felt like this, I've also been left feeling like I must be constantly letting all you lovely people down. I'm not an endo sister that posts constant inspirational posts or talks to other ladies all day, every day. Somedays, I'm going through terrible pain and depression and I can't find anything in me that wants to be 'inspirational' - then on my good days, well, I don't want to be brought down. I realise that must sound like the most selfish thing in the world but, if I've learnt anything over the past year and a half, it's that my health is paramount and I must put it first, well before anything else. So I apologise if I don't post pictures of my sorry face and swollen tum every day on Instagram , I'm sorry I don't actively participate in chatter on Twitter or Facebook and I'm sorry once again for losing faith in my blog. Sometimes, I need space from this horrible disease and this is my way of coping. Anyway, I seem to be ranting so let me get back to updating you all on recent events.
June saw the start of mine and the boys fertility journey. Wednesday 19th June was a very big day for us because we had our first appointment at the fertility clinic. We went through our history with our doctor and I explained how damaged my insides were and how my periods were all over the place. Unfortunately, we hadn't been able to get our samples (blood tests for me and sperm sample for the boy) done in time for the appointment - mainly because my period had mucked up so much in May/June - but, luckily, the blood tests I needed were changed so now I just have to have 1 test and then the boys sample. My blood test will be to check if I'm ovulating because, sadly, they don't think I am. I then had to have an internal examination and some swabs taken to check for infections. And then, I had to have the dreaded internal scan! GAH. I've only had one before, when I went in to hospital with my flare-up last year and they are blummin' horrible! I think I got so worked up about it that I made it worse and ended up in tears with the pain. The doctor, her registrar and nurse were so lovely though and were really caring - they were even holding my hand to try and get me to calm down! Unfortunately, it looks like the big mass on my left side, where my fallopian tube, ovary and bowel were all joined together and attached to my abdominal wall, which was all pulled apart during my surgery in January, is now back! I'm pretty gutted that it's gone back to how it was so quickly. But, apart from that, they think my womb looks healthy which is great news. The doctor wants to put us straight through for IVF - on hearing this I burst in to tears again! - and before the treatment we have to go to counselling together. I also need to continue with my Liaison Psychiatry . We see her again in September, by which time I need to have had a smear test and my blood test, and the boy needs to have got his sample in to the hospital also, and then we will discuss the next steps and about having my fallopian tubes checked for blockages (which they can either do via laparoscopy or with me awake and inserting something in to the vagina - both as bad as each other really!). I was told in January that my left tube is blocked so I'm praying my right tube is fine. Anyway, I'll keep you posted as to what happens next.
I've been very down since the appointment. It's hard trying to get your head around so many things being wrong with your body - especially with the not ovulating part. My body should do this naturally and yet mine isn't. I just feel completely broken and useless. And so very guilty. Guilty for having to put the boy through all this. Guilty for not being able to give him a child naturally. Guilty for being so completely useless. But, he's still here. I tried to push him away, on more than one occasion, but, thankfully, he won't go anywhere. I'd be lost without him. Just nothingness.
June was a good month socially because not only did I have my first night out in over 6 months, but we also went to Download Festival and spent a beautiful day celebrating our friends Laura and Chris' wedding. Download was wonderfully epic as usual but it's hard work. This year it was headlined by Slipknot, Iron Maiden and Rammstein. We didn't do as much walking as last year (mainly because we knew our way around this time and didn't have to listen to silly stewards sending us the wrong way!) but it rained pretty heavy on the first two days and, with there being little seating, standing all day took it's toll. By Monday I was completely dead to the world! We managed to find a little tea tent called Motley Brew where we frequented more than anywhere else because they did 'proper' cups of tea and we also managed to get some of Iron Maidens Trooper beer before it sold out (so my one alcoholic drink of the weekend was pretty special!)! I can't wait for next year now but I need to get saving! This years and last years tickets were paid out of my redundancy money so I need to gather some funds to pay for this ticket! As for our friends wedding, it was an absolutely lovely day. I saw friends that I hadn't seen in months, made new friends and even had a little boogie at the end of the night all on top of the moving ceremony and summery location! Congratulations Mr and Mrs. Bumpus!
I had my first pain management appointment a few days ago. After having weeks of being very, very, down and feeling like there was no hope, I came out of the hospital with a new found punch of positivity. The doctor I saw was lovely. She put me completely at ease and was very easy to talk too. She was also commenting on the trousers I was wearing so we were laughing about her wanting to steal them! I had no idea of what to expect other than what the Liaison Psychiatrist had said about getting help with pain relief to enable me to get back to work. I explained to the doctor whats been happening with my health, what treatments and surgeries I've had in the past and exactly where my pain is and how often it occurs. She then did a full examination. I had to strip down to my pantaloons (thank goodness I'd worn nice knickers!... Though they were see through at the back which I don't think the nurse must have appreciated! What a sight!) and move in different ways, like trying to bend to touch my toes, bending my body sideways and arching my back as well as trying to do a little sit up with her poking my tummy at the same time (ouch!). I then had an internal examination too. She was very gentle but she could instantly feel how tender my muscles were. After the examination, she talked through her findings and has diagnosed me with a condition called "endometriosis associated pain". She explained to me that after having had so much endometriosis removed in my surgeries, the types of pain I am having with going to the toilet and a lot of pain in the muscles, along with the pain being constant, all point to it not actually being my endometriosis that is causing the pain but this endometriosis associated pain, which she sees in many women with endometriosis, but not all of them. She also mentioned something about my pain receptors splitting as they are going up to my brain and half off them coming back down in to the muscles. She told me that in the examination I had found doing a sit up with her pressing on my tummy far more painful than doing the sit up without her pressing on it and also, internally, she hadn't touched anywhere near my endometriosis sites, just the muscles on entry. This all points to the same diagnosis. So, she wants me to see a physiotherapist to help my core and a psychologist to teach me relaxation techniques (I feel proper mental now seeing a Psychologist and a Psychiatrist - on top of the counselling we'll be having pre-IVF!). She also suggested I get back in to swimming by doing a width of the pool at first and increasing the exercise from then on. For now I have to stay on the same medication. She wanted to put me on something else also but since we are trying to conceive she suggested I didn't start it as it would be hard to come off of. I see her again in February next year and I would assume that by then she wants to be seeing results. I'm really excited about all this. I feel if I can get rid of this extra pain then I can get back to how I was pre-flare-up and be back to 'normal'!
So, now it's just a case of waiting for all my appointments to come through and to get working on this broken body of mine.
As for my benefits, I won my second appeal also! I was put back in to the support group status in June and since then they've back paid me to March and put me back up to the full amount of weekly payment. Unfortunately, several weeks ago I had yet another 20 page questionnaire from them because my next medical assessment is due by the end of July. Ridiculous isn't it!? I've spent the last 5 months fighting the outcome of my last assessment and now it looks like I have to go through the same thing all over again. At least this time I can go in and show them that some progress has been made with regards to treatment. I'll keep you posted - I can feel a rant coming on so I need to get off this subject quick!
We finally got Bunty and Grandpa's gravestone in place and so we had a little family gathering at the cemetery and few weeks ago for it. It looks beautiful and afterwards we had a lovely barbecue in the sunshine to celebrate.
I went to the Royal International Air Tattoo at RAF Fairford last weekend with my parents and the boy. I am such a massive plane geek and I love watching them. The weather, laughably, was a little cool on the day (it's been an incredibly hot heatwave the last few weeks over here in England - just typical that the one day we want to sit out in it all day long, the sun goes in to hiding!), but we took a picnic and it was a lovely day. On top of seeing plenty of jets and helicopters we also got to see the Airbus A380 perform a special flight flanked by the Red Arrows and it was absolutely amazing. I also couldn't believe some of the tricks the Apache and Chinook helicopters were able to perform. The Chinook especially looked like it was going to drop out of the sky! They also had a special commemorative flight of a Lancaster, Hurricane and Spitfire for the 50th anniversary of the Dambusters and all those who have lost their lives in action which was very moving.
Me and the boy are off on a little holiday in August to my parents caravan again. We can't wait to get away for a bit and be near the sea. It's such a beautiful area of the country and there is so much to see and do nearby. Not long now!
Anyway, this post has taken me weeks to write and the boy finishes work soon so I better go and make myself pretty so he can chauffeur me in to town for a slow wander around! I hope you are all well and hopefully coping as best you can... I promise to post again as soon as I can!