Sunday, 22 September 2013

The dumb resurgence of hope.




 



 
It feels like such a long time since I last wrote on here and I have so much to tell you all... And yet I feel like I really haven't done anything in the last month and a half, other than visit doctors and hospitals!

As per usual, nothing has changed with my endometriosis. The pain is still as bad and every now and then I get new, agonising pains that almost bring me to my knees. I'm still on the full amount of tablets and my periods are still all over the place. Last month it was 3 days late and, of course, I got my hopes up, but alas, a pregnancy test soon sorted that one out for me and then said period arrived and gave me hell for almost 2 weeks again. I feel sad that the clump of endo that had been pulled apart in January is back to 'normal' and stuck together again and I think about that a lot. I feel now like the surgery I had waited on for so long was pointless. But then, you have to try everything (again and again) don't you!?

My acne has also been getting worse and worse over the past months and right now I'm at a total loss with it. I bought a fancy facial brush a few months back and it has made a huge difference to the texture and cleanliness of my skin, but it's my hormones that are the problem. I can get my skin to moderately clear and smooth with just blemishes that need covering but then, that time of the month comes and unfortunately, so does a mass of painful, itchy spots. Has anyone got any tips with coping with hormonal acne? I've pretty much tried everything I can now cosmetically, and using the facial brush (which I'll do a little write up on soon) has shown me how dirty my skin still was even after cleansing each day, but, hormonally, what can I try? I don't want to try tablets (I'm on enough as it is!) and obviously the contraceptive pill is out of the question. I've tried one cream from the doctors before but that just dried my skin out terribly and made it sore. Are there any natural treatments anyone can suggest?

I had my second liaison psychiatry appointment in August and boy, what a pile of shite that was. As mentioned previously, I'd been struggling with the fact my appointment had been pushed back by a month already - amongst other things. But, I arrived at the hospital and found I was seeing a different doctor. This time it was a man, and I didn't catch his name but he said he'd be seeing me over the next year. I didn't know how much he knew about my situation so I filled him in but he seemed to forget all that and kept referring back to the letter that my pain management doctor had copied psychiatry in on. I explained where I was having problems, what was happening treatment wise, what had come out of my last psychiatry appointment and, basically, he butted in and ignored everything I said. He told me that other people with chronic pain are able to work so we need to work out why I can't. He said that I'm only depressed because of the recent fertility clinic appointment we had and that after my other pain management treatments (psychology and physiotherapy) are complete I won't be depressed. He also said that I need to get out the house more. Great ha!? So apparently my depression that I've suffered with since I was 16 will all be completely gone by February next year and I won't have any more problems. I tried questioning him on things and tried to make him see that I was attending liaison psychiatry for that exact point, that I cannot get out the house, but he just wouldn't take that in to consideration. I said that I try and get out the house whenever I can but I cannot drive (due to the pain and amount of medication) and cannot always walk the distance to the bus stop. When someone is around to drive me then I will go out with them (he also questioned why people weren't around to drive me - errrmmm because they work!?). He asked why I don't go out for walks and I reiterated my above point and said that some days I can't even get down the stairs without being in agony and when I do walk, I suffer more on the following days - to this he suggested I walk as far as I can and back again. I was so upset that he just didn't listen to me at all and came out of the hospital and sat on a bench in tears. I had waited all that time for someone to give me a totally generalised view of depression and not know anything about endometriosis or care to take in to consideration my situation. I felt completely lost and empty. I didn't know where to go from there or what to think. I was just devastated from it and felt really hurt that someone in that sort of position could care so little and hurt someone so much by not thinking.

I went back to my GP following that appointment and told my doctor all about it and asked for some help. My head was all over the place, I was crying all the time and I felt more depressed than I had done in months. I was at the point of pleading with her when she talked me through everything and suggested I try counselling again along with a different antidepressant. I've now been on Duloxetine 30mg (Cymbalta) for just over 2 weeks and so far I've not noticed too much difference - as I'm not expected to have yet. I feel a little better for having someone understand me and help me but apart from that my emotions are still very much the same. I see my GP again on Tuesday, this week, so she can assess how I'm doing on these tablets but I don't think I'll be going back to liaison psychiatry again.

I received a referral to the counselling service last week, but on the same day I also got my appointment through for my psychology appointment (part of my pain management - oh, and just to add, I'm still on the waiting list for the physiotherapy) and I had my first appointment with my psychologist this Thursday just gone. I didn't know what to expect and was very anxious on the day but my pain management doctor had really recommended this psychologist (who also runs a pelvic pain clinic so knows what she is talking about) so I was somewhat excited about it. I had a few forms to complete and then we sat and talked for about 40 minutes. At the end I felt like giving her a big hug because she enabled me to talk about everything that has been troubling me - not just the endometriosis, not just the infertility, not just the seclusion, but all my other personal issues too. I was really upset from having to talk about everything but I know I have to do that to get past the issues. I see her again in just over a week and between now and then, I have to complete a diary for her and also listen to a relaxation CD for 15 minutes each day. That will be my second of six sessions and then we see where we both feel like going from there. She did say though that I shouldn't do any other counselling as that would work against her work with me (which I had assumed anyway). I've been very down since Thursday and it's been a struggle. I've found I'm more tearful again and I'm thinking more about everything but I feel so thankful that I have found this doctor, my psychologist, because I finally feel like I have found someone who can help me with all my struggles.

Along with all my other hospital trips, we had our second fertility clinic appointment last week. Our doctor ran us through our test results and we came out positively beaming! My blood tests show that my ovaries are healthy and are working as they should be - though I'm still not ovulating. The boy's sperm is well above average and, as you can tell, he's over the moon about that! So we passed our tests and everything is as it should be which is great, great news. From this she has now referred us on to the actual Fertility Clinic (not the sub-fertility clinic which is where we were being seen) and after a course of counselling we will be on our way to starting our little family with IVF treatment! Isn't that just fantastic, fantastic news!? Another good thing is I won't need to have my fallopian tubes checked because having IVF treatment just cuts them out all together, so if the left one is blocked (like they told me in January) it won't matter anyway now. I feel overjoyed and so very blessed that we have this chance. I have read so much now about how you may not match all of the criteria to be put through for IVF, let alone all of those people who cannot afford to have the treatment. We have one course of funded IVF and then if that doesn't work then we will need to pay. At the moment I only know what's on the leaflets they have given us but we have our first planning appointment in just over a week so we should know more then. It still hurts that we have to take this route to having a family and that my body isn't working how it should be, but, nevertheless, we will have a family. I have to keep telling myself that because I know that even with IVF we may still have to deal with ectopic pregnancies, miscarriage or it just simply not working. It's just a case of relaxing and seeing how it goes. It all feels so surreal right now.

I have been battling a little with whether to share our IVF journey on here or not. Since we had our appointment, we've not really discussed it with anyone other than our parents and I've felt like I wanted to keep it secret as others get to do when they are pregnant. But the boy pushed me to continue writing because he is worried I may need support from others while we are going through this. And he's right. Right now especially I really want advice from people who are in the same position as me, or those with endometriosis who have had IVF. If you are one of those people please get in touch because I'd love to know how its been for you. I've read quite a lot on IVF but I suppose it's different for everyone and to be honest, I'm really frightened at the moment. I don't know what to expect and I don't want to be too happy about everything because I know how much stands in the way still. It's such a strange feeling and the boy just tells me to think positively and be happy but I can't because realistically, anything could happen.

We had our little holiday (as you may have gathered from my last post) and that was lovely. I wish I could wake up next to the sea everyday! I've also been on a couple of fishing trips with the boy, my dad and next door neighbour, which have been lovely because I get to sit in peace all day and read and take photos. We cleared my grandma and grandpas house out last week as that has finally sold and that was heartbreaking. But, we got the things we wanted to keep, the things that meant something to us, so our house, currently, is full to the rafters! We've been trying to clear things out and I've slowly been getting things EBay'ed because of it but it takes so long to do! But soon, soon we shall have a clear house again! With all that going on I've been splitting my time mainly between resting and EBay but when that's all done I plan to finally get the shop open - I have 2 big boxes filled with beautiful vintage goods to be sold so far so it needs to be open now, now, now! 

Anyway, there you go, quite a lot has been happening! Apart from that I've been keeping myself to myself and trying to cope with everything that's been happening really. 

Please, please continue to leave your lovely comments and emails because I do read them all. As I said previously, as soon as I've made some headway with this house clearing and the shops open, I can dedicate some time finally to replying to you all - so please don't think you are being ignored!

<3

2 comments:

  1. Hey I found your blog recently and find it so helpful. I'm recovering from being run over a year ago and 3 weeks ago had a laparoscopy and was diagnosed with Endometriosis. I'm still waiting for a follow up on that but feeling so frustrated and confused if you would be happy to chat at all that would be amazing..I'll leave my blog and twitter and hope to hear from you lot's of love, Georgia xx
    https://twitter.com/1992_georgia
    http://georgiasurvivingtheunsurvivable.blogspot.co.uk/

    ReplyDelete
  2. Thank you for sharing! I ran across your blog by googling "blogs about endometriosis". I was diagnosed with endo about a year and half ago, by having a laparoscopic surgery to have a cyst removed, and low and behold they found several lesions of endo. Since then, I've had another surgery to remove more. Just recently, the pain has become worse. My husband and I are trying for a baby and at times it can be a little discouraging. I am glad I found your blog, please continue to share your journey! It helps other people in theirs.

    Best,
    Allison Grubbs

    ReplyDelete

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