# Nearly 40, diagnosed with Endo, about to start IVF, first appointment Friday



## kazzzee (Jul 29, 2014)

I've just written up my whole story over on the Endometriosis section of this site, but hopefully I'm not breaking any rules by posting it here too: 

On Friday we have our first appointment at the hospital on our journey to IVF... I'm really looking for any advice and tips of things we should do to prepare for the appointment, things to fight for, any stories from people with endo and age against them... 

Here's my background. 

Prior to being admitted to hospital in 2007 I'd been in and out of casualty on a number of occasions with what must have been ruptured cysts or adhesions but each time they were putting it down to IBS. Luckily a GP made the connection and referred me to a gynaecologist eventually so in November 2007 when I was rushed in  (collapsed on the tube) they knew that I was awaiting investigative surgery and that's probably why they didn't just send me home. They found severe endometriosis and I was in surgery for a long time. 

Further surgery in September 2008 removed more endo and adhesions including one from below my appendix scar (I used to experience what I described as phantom appendicitis following my appendectomy in 1991. My consultant noted endo on my ureter. 

The last major surgery was in April 2009 when I had the ureter opened up to address an issue with my kidney not draining that they say I was born with (but I was convinced was connected to the endo due to the findings in 200. They discovered the kidney was quite damaged in an ultrasound. I was suffering excruciating middle back pain before having this surgery.

Fast forward to 2010 when I came off Cerazette which I'd been taking two a day since 2008... I was fed up with the symptoms, low sex drive, painful sex, etc. I also had it in my head that we should start trying to conceive. I knew my time was limited. It felt like a step in the right direction. 

(I almost forget to mention - I can't eat gluten without being immediately very ill, and I also have to avoid dairy too. Apparently this is pretty common in people with endo). 

By February 2013 my endo was stating to play up again, I was suffering from excruciating back pain for two weeks every month after my period. I was referred to the hospital and the consultant said I had to try and conceive and if it failed they would address the endo. Maybe he thought I needed the push, but I was terrified that if I got pregnant I would have a miscarriage due to the endo. He said that I just wouldn't get pregnant. I'm still announced that they basally ignored the endo and told me to get pregnant... 

My boyfriend (of a couple of decades) and I talked about TTC, but it took until the end of 2013 for him to come to terms with the fact that time was running out, and for us to properly start trying. I wonder if I'll blame myself for not pushing him more, or if the reason I didn't is that I was afraid of failure (and miscarriage), and it was easier to pretend it wasn't really happening. 

Anyway. Here we are, after months of getting the blood tests and semen tests, and all the other things my doctor insisted they needed before they could refer me (even though I had a letter saying to refer me after 6 months of TTC). 

So, now you know my story. Has anyone been in my position. What should I expect from the 1st appointment at the fertility clinic. Should I push for a lap as soon as possible? We're prepared to pay for the IVF if necessary, but at least I should get the endo dealt with on the NHS... 

Sorry, I went on a bit there!


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## Hbkmorris (Apr 7, 2010)

Wowzters you have been through the mill so BIG   to you flower. 

Reading your story I would say go for a lap and push for one ASAP to may sure everything is ok. I'm a lap girl since 2010 where my hydro tube was clipped (with a terrible pants of a clinic)anyhow as the failures kept coming I felt something else was wrong. I had a hysto in Jan 2014 (NHS hospital wouldn't do a lap as they said it was required.. I continued to know something was wrong and went to a private BMI clinic only to find YES there was a major problem.. Left tube was hydro and measured 14cm long by 10cm in diameter, tennis ball cyst which hung off my left ovary, everything was stuck to my bowl & bladder and then I was covered in adhesions.. Thankfully one operation later and I'm restored to a pain free life, my handbag is cleaner and more perfect than ever before and I'm ready to fight another day. SO you push for a lap chicken.. it's really the only way they can check deep inside. 

So your first apt they will give you more tests, make sure they include:-
AMH
FSH
HIV
Hep B
Hep C
Rubella 

They may also include some other CD3 blood works such as:-
Progesterone
Estradiol 
LH
Prolactin
Testosterone

They'll ask for another Sperm Sample (as a rule) 
Scan you internally 
and discuss the protocols available to you. 

Once thing with your age to bear in mind is, if you have a low or below average AMH & FSH may be higher for your age I'd always opt or push for Short protocol. If these are normal a lot of NHS clinics like ladies to do Long protocol.. Now I personally don't long protocol with 2-3 weeks of down regging as the medication makes me feel pants!! 

So long protocol:- Is where you down reg for 2-3 weeks on day 21 of your last period using an injection or a nasal spray then after a DR scan to check your lady bits have closed down lovely you will then start stimming medication which again is in injection form.. You will have a further 2 or 3 scans to check follicles have been recruiting and growing into juicy grapes then they book you in for EC. They'll tell you when your last injection day is then you'll be asked to injection Pregnal (or something like it) to mature your eggs ready for collection and from memory it's 36 hours prior to collection. 

Short Flare cycle:- (which suits me very much) You have a scan on day 2 of your period, then you start DR medication and on day 3 start stimming medication I have a scan 5 days later to check follies and normally 3 days after that another then at that point I either go back for another scan or I'm cooked and ready to go and follow the above pregnal injection. 

I also have immunes drugs as I have raised NK cells so I take Prednisolone, Clexane, Gestone and have intralipids.. 

It is a mind field and clinics do lots of different protocols and tweak things to suit you.. Sorry if I've confused you.. hope not. 

All the very best. I shall look out for you.. I'm going to start cycle no 6 in October!! For my sins! xx


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## kazzzee (Jul 29, 2014)

Thank you so much for all your help hbk  

You've certainly answered a lot of the questions I have right now! 

Lots of terminology for me to become familiar with!


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## Talkingfrog (Apr 17, 2014)

Kazzzee - if you have a look in the newbees section there is a list of abbreviations and other useful info.  Good luck.


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## kazzzee (Jul 29, 2014)

Thanks Talkingfrog, I will look! Need a cheat sheet!


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## Dinkyminky (Apr 26, 2014)

Hi Kazzzee,

Sorry to hear of all you've been through.

Hbkmorris's response is really thorough. 

Whilst I've mild/moderate endo which was only diagnosed when I had my ectopic, it was interesting to learn when we started to consider ivf that the fertility consultant indicated that IBS was seen as immune system disorder. I realise you were misdiagnosed for ages but I'd ask if the clinic does immune tests.  For me, having these showed that my immune system was quite high and potentially a cause for the embryo to not stick (high immune tries to attach what it sees as a foreign object).  I'm pleased we found out as it's helped me to work on addressing that and hopefully have a successful outcome with ivf. 

Good luck with your appointment today.


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## kazzzee (Jul 29, 2014)

We had our first hospital appointment at the fertility clinic at Croydon University Hospital and I think it went well. We saw a really lovely nurse, Alison, and she asked the other half a load of questions, which he passed with flying colours because he only has asthma, rarely drinks, eats healthily, exercises, and claimed his job is not stressful (although I disagree because I've seen him stressed because of it). 

Then she moved on to me. Four operations - two for endo, one for my kidney, and a appendectomy. A gluten and dairy intolerance. And a mother who had a congenital heart defect. I told her about all my recent endo symptoms, and told her I was worried that something was wrong, and she arranged a nurse to scan me. 

Nothing showed up in the scan, but the nurse said that she could see the eggs that were left over from ovulating this month. A decent collection by all accounts, I think there were around three in each ovary, or at least one ovary had three or more, I couldn't exactly write it down at the time  

Despite the 'all clear' as far as they were concerned, and having been advised that doing another lap might be detrimental to my chances, because further surgery would just cause more adhesions, Alison booked me in to see the lead consultant Mr Booker on 15 August. She basically recognised that my case was going to be quite complicated, and she wanted to make sure he was aware of my current symptoms. He gets to make the decision of whether I have a lap or not. I've a feeling they are going to opt for not, but at least he's an expert so I guess I have to trust his judgement. 

Of course the other thing that came up was my age. With just over two months now until I turn 40 (I don't look 40, I wish I could say the same about my insides). I was sure that they would say that there is no chance of doing this on the NHS. However, it turns out that as long as they get the funding for me before my 40th birthday, then I get 6 months from when I get the funding - which could mean that I start just after I turn 40. The other great bit of news is that because of my age I basically get fast tracked. 

This makes me feel a little bit guilty about the people who have to wait longer. Especially because my friend who is also going through this process has to wait until September to have a laproscopy to see if she has endo. Of course there is no need to diagnose me because we already know what's wrong so I don't have to join that queue. I hope she doesn't feel hard done by if I get to go first (she's also 2 years younger than me, so I'm guessing there will be no queue jumping for her). 

So there you go. In summary: saw the nurse; answered loads of questions; was scanned and they were pleased with the number of eggs they could see; I had a blood test for AMH (Antimullerian hormone) which will check my egg reserves; the nurse has made an appointment for me to see the lead consultant to talk endo on 15 August; and my application for IVF funding is being sent off straight away in an attempt to get it before I turn 40.


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