Endometriosis Diary

[Fliss]

Yeah for us its a minimum of £5,000 since it's almost impossible we'd qualify for free treatment on the NHS.

However to cheer me up a bit I've had a lovely evening.

Sat on the sofa with Nathan and we read his colour book and Where's My Cow and he was interacting wonderfully.

Okay so EVERY colour was 'lellow' or 'GREEN' but he was repeating things back to me, and asking questions about the pictures in the second book. May finally have some version of the bedtime story back that he ditched months ago. More than happy to read WITH rather than TO.

Can't wait til we can read bigger books together.

Then we snuggled on the sofa and watched most of Chicken Run and got all sleepy.

Just a lovely end to the day.

 

[Fliss]

Bleh random agonising pain day today.

On the up side - I had a letter through from my surgeon confirming that I definitely do not have ovarian cancer - always a good thing to know

 

[babyvaughan]

Yes a very good thing! I'm taking evening promise oil even though were not trying I heard it helps with cm and cramping with af! I have been taking it for two days and oh my has my cm increased lol

 

[Fliss]

Really? Might give that a go as well then - my DH has stated he'd much prefer I not mess about with serrapeptase as he can't find any sources he trusts that vouch for it.

He's half of this process so we will do that. Really hoping I get my follow up appointments through soon - I want to TALK to my surgeon about supplements and things I could try that she wouldn't object to...

Coil out tomorrow. Folic acid and temping already a regular part of my schedule.

B6 and OPKs purchased, just need to order some Agnus Castus then we are good to go...

 

[babyvaughan]

Have you both had your vitamin d checked? My boyfriend's was a 10 and mine was a 14 the minimum is 30 for dangerous but 50 is the minimum for normal. We have been on high dose for months and ours are still a little low but doubled! For men it can have a big effect on there sperm!

 

[babyvaughan]

With the evening primrose I read to take it up til O each cycle since I decided to not try to save my sanity I dont know when I O but I'm stopping at day 14!

 

[Fliss]

Soooooo they couldn't get it out. Strings were too high up. So I have to go into my surgery for 08:00 on Monday morning for the walk in that opens from 08:30 and specifically tell them which doctor I need to see as the coil removal specialist.

Been advised to bring a flask of tea and a book!!!

God alone knows how long I'll be there.

I'm just so sick of all of this now. I'd just like one part of the process to not go hideously wrong.

I want to NOT BE BROKEN.

Is that SO much to ask???

*headdesks and weeps*

 

[babyvaughan]

I feel you, everyone around me is prego or just finding out and its destroying me inside because its all I have wanted for so long!

 

[Fliss]

No joy. Coil still very much in place and expert doctor couldn't see the strings at all.

Difficult Coil Removal clinic referral. Or outpatient for my op if sooner. Not going to be fun.

Honestly I've just had enough. Now I'm sore and bleeding and it's all for bloody nothing.

 

[babyvaughan]

I have had enough as well this cycle we didn't try af arrived on day 24 when I normally am 28-30 :/ it was spotty so I was hopeful but then it came full course and I was bleeding way to much I went hospital the weird part is I didn't cramp once and still haven't my uterus is not contracting, no clots the docs can't figure it out but thankfully yesterday and today my bleeding has slowed down

 

[Fliss]

Oh darling I'm sorry

So as I've been venting thought I might post an update...

I got so so frustrated with the medicals not taking me seriously that I phoned the GUM clinic on Friday and asked to be seen.

We rushed up there on Friday (because they couldn't just 'do it' I needed to be assessed *sigh*) and waited.

When I got seen, the lovely doctor I saw went to book me in, and came back to tell me that my awesome GP (the one who initially failed to get the coil out) had already referred me up there and I've got a specialist appointment on the 12th November to get it out - it's going to involve an ultrasound and local anaesthetic on my cervix to get this ******* but it's going to happen.

Interestingly I also have a random appointment up at the Gynaecology clinic where I had my surgery done on the 2nd November - but although that's the one I literally cried for, no-one can tell me if that is actually to have an attempt at removing my coil.

So I've kept both - if they can't get it on the 2nd then I've got the back-up on the 12th.

I know I'm losing time, I feel it, but there's NOTHING more I can do. So I'm trying really hard not to obsess and stress.

I'm taking my FA, my Agnus Castus is on route, and I'm seriously debating the serrapeptase and so we shall see.

Oh and they did an STD screening whilst I was there too, as since they are doing some somewhat invasive stuff they like to check they won't be pushing infection where it really doesn't need to be...

In other news, I was a complete pillock and let our Nintendo 3DS fall out of my handbag somewhere up at the hospital so unless some kind soul hands it in (which I doubt somehow) I've lost both it and the game I'd just bought for it that I was really enjoying. Oh and all our downloaded ones (paid content too) as Nintendo do not understand the concept of downloadable games and so the concept of losing/upgrading and thus wanting to you know, keep what you've paid for, doesn't seem to occur to them.

Oh and a very good friend told us that she's 9 weeks pregnant yesterday - her husband i one of my husband's oldest school friends and so I'm thrilled for both of them

I actually expected to be jealous, but I'm not - just excited - so I'm reassured that I've not gone totally insane with this all yet.

Oh and I have my gym induction appontment tomorrow at 10:30 so that's all started too.

I'm feeling more positive as the days go on.

 

[Fliss]

Well it's not baby-related, but the hospital HAD MY 3DS.

Hubby went back today and picked it up - it was even still charged enough that I hadn't lost all my progress.

Feeling grateful!

 

[Fliss]

So, in an attempt to regain any sort of control I have bought my serrapeptase and Oil of Evening Primrose.

I'm also debating getting my hands on Royal Jelly too.

Couple that with my Agnus Castus, Vitamin B6 and Folic Acid, I'm set up on supplements I think.

I feel like such a fraud considering how much I dislike homeopathy - but I look on it as I'm not abandoning traditional medicine, just trying to give myself as good a shot as I can.

It seems Royal Jelly is part of the Holland and Barratt penny sale, so may as well stock up a bit and save on Amazon postage too...

Honestly it's been so hit-and-miss I've not been in a particularly good place mentally if I'm honest.

My appointment on November 3rd up at Gynae has been cancelled. They then rebooked it for 8th DECEMBER - not bloody good enough. I only found this out by accident because I'd been bugging my surgeon and her secretary about the nature of the appointment up at Gynae.

So my surgeon looked into it, realised they'd cancelled and rebooked it for a month later - and I'm already pissed off I'm losing a month as it is. So she referred me back across to the Endo Clinic who have booked me in for the 3rd November again... but later in the afternoon.

So I have retained my appointment up at the GUM clinic in a different hospital on November 12th because quite honestly I'm appalled at how I've been treated and right now I trust nothing and no-one.

I got the cancellation and re-booking letter on Saturday and today the separate cancellation letter for that re-booking and a totally new letter for the appointment at the Endo Clinic... at least I HAVE that I suppose.

Oh, I randomly started spotting today with no pre-warning - i.e. no utterly agonising pain. Perhaps this is a sign of things to come... except that I have none of my CSP with me and no sposies either... must put some in my handbag tonight.... no point having the fluff if I don't have it to use...

 

[Fliss]

So at 16:30 today I WILL be up at the JR and I WILL be having this ******* out.

It's effectively giving birth to it and I'm bloody dreading it. But it has to happen.

 

[Fliss]

It's out its out the damn thing is OUT!!! Never been so grateful to bleed in my life!!!!

 

[babyvaughan]

Well as I said I would I stopped trying, I planned to get on birth control next week after af was suppose to come yesterday but instead I found out I am pregnant!!!
4 weeks 1 day and yesterday my hcg was 68 I go again tomorrow! I bawled my eyes out, really scared but excited! I never in a million years thought this would happen naturally we were planning to save for the next two years for IVF!

 

[Fliss]

OMG oh lovely oh I'm thrilled for you keep me posted - so so pleased!!!!!

 

[Fliss]

So, coil successfully out on Monday.

By Thursday what looks like my AF had made an appearance.

I say 'looks like' because it's totally different to how it was before - lighter and almost pain free!!!!! I mean honestly I'm in light-moderate pads and just a hot water bottle to keep slight cramps at bay.

I used to scream in agony and have to swallow all the pills ever!

So, that at least has been an upside to the surgery.

So, I'm back taking all the pills ever (Agnus Castus is CD 2- 6) so Tuesday I can stop taking that, then Oil of Evening Primrose til after I ovulate.

Completely unsure about when that will be, FF is predicting it to be next Thursday (so in two weeks time) based on my old data so we shall see.

Unfortuantely the dildo-cam scan on Monday did show that I already have at least one new cyst on one of my ovaries - but according to the scan tech this could just mean I ovulated - and damn well missed it due to coil issues bloody hell.

 

[babyvaughan]

My levels more than doubled!! 215!!

 

[Fliss]

Whoop whoop