# Feel so alone, Stage IV Endometriosis, IVF Care Sheffield



## Shippo

HI Everyone.
I really feel like I am the only person in the world going through this, and would really love to hear from others in the same situation for support.
Bit about me: I am 35 (36 in March) DH is 46 and all ok with him.  We've been TTc for 2 years in June. Nov 2012 diagnosed with stage IV endo.  Every month is utter agony.  I feel like this is ripping my  insides out and destroying all my lady bits! Gyne from York referred us to Leeds and they have been nothing but rude on the phone to me.  We have heard nothing from them.
I have since self referred to Care Sheffield and we have our first appointment in Feb.
I only have one clear free working tube, but am terrified every month, the endo destroys a little bit more of me and diminished my chances further of being a mum. 
Is anyone else suffering from this debilitating disease?
Has anyone had any success with IVF and Endo?
I am terrified of the cost from start to finish with the IVF, as we have to pay for everything ourselves. Does anyone have any ball park figures?
I feel so alone, whilst it seems like the whole world around me is pregnant! 
Really would like to make some friends and find a support network
Thank you
Claire


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## Wraakgodin

Welcome to FF, Claire!!! Have a good look round the site, post in whatever section you want and make yourself at home. There are so many sections here with a huge amount of information, so whatever you are going through there will be someone here to help you.

I haven´t got endo myself, we have been marked as unexplained, and I am over in The Netherlands so not sure how much it costs over in the UK. In those respects I am pretty useless to you, but I can give you a few inks that I think might help you (either now or in the future).

Endo ~ CLICK HERE

Tubal Factors ~ CLICK HERE

IVF General chat ~ CLICK HERE

Keep a diary of your treatment (or read the experiences of others) ~ CLICK HERE

Cycle Buddies (undergoing treatment at the same time) - CLICK HERE

Complementary and Holistic Approaches - CLICK HERE

Yorkshire ~ CLICK HERE

Coping With Infertility ~ CLICK HERE

What Every New Member Needs To Know (includes a list of common abbreviations) ~   CLICK HERE

Our live chat room has a new member chat at 8pm on Wednesday. Here is our Chat Zone section which will give you info on other chats: CLICK HERE

Please feel free to ask more questions here, or on any other part of the site, there will be wonderful helpful people there to give you lots of support, information and cyber hugs if you need it.

Good luck!          

Sue


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## Shippo

Thanks Sue. Am navigating around ok I think! 
It's a really scary start, so thank you for ur reply. 
Taken me a while to pluck up the courage to even reply! Just hoping to hear some positive outcomes from others in the same boat!


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## Roodkate

Hi shippo,

How did you find out about your endo. They would probably want to thin your lining prior to Ivf after perhaps Adhesiolysis which can increase likely hood of natural conception too, if it's your only issue.

Don't just jump into private as you may need other treatment first. I have seen on here where people pay for many ivfs before finding out other things that prevented it working all along- expensive lessons!

I have had 3 months of gonapeptyl after my Adhesiolysis prior to my first round. Before I knew I was off private too, but if I had not waited for my first nhs appointment all that au have been missed!

Best wishes

X kate


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## Shippo

Hi Kate
I had a laperoscopy in November that discovered the endo after such severe pain. I've got various things stuck together, and gyne said my only hope is IVF. Got my first consultation on the 14th to see what's what. I know they've seen some cysts on my ovaries, so don't know what that'll mean.
What are the drugs U've mentioned? How come doctors seem to do nothing for such a debilitating disease? My gyne pretty much said I had less than 7% chance of ever getting pregnant, even with ivf. I've been hospitalised with the pain twice, she comes and sees me and just says I need a hysterectomy! 
I cry so much with the pain, emotion and utter helplessness!
What stage u at? 
Best wishes, Shippo xx 😃


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## duckybun

Hi shippo,

You are definitely not alone! I have stage 4 endo which I was diagnose with last year and I'm on the pill back to back now in the lead up to our first ivf in a couple of months time. We've also been given pretty low statistics on getting pg, less than 10%, but we still have to try!

Was your lap in November purely diagnostic or did you have surgical treatment as well? You should look into whether or not your surgeon is an endo specialist, believe it or not many gynaes do not actually know a huge amount abou endo. Have a look and see if there is a hospital near you that has an endo centre of excellence, there are a few dotted about the country and if you can get referred over to one by your gp they should be able to offer you better surgical treatment than just saying you need a hysterectomy. You can find a list of endo centres here .... http://www.bsge.org.uk/endometriosis-centres.php

The drugs Kate mentioned bring on a pseudo menopause state for 6 months, they don't cure the endo but the theory is that they stop your hormones from feeding it so they reduce the bleeding and pain and can shrink the actual endo lesions. If your gynae hasn't even discussed these drug options with you then I would strongly suggest you need to do a bit of research on the endo centres then get yourself down to your gp and get referred.

As for the pain and crying with the emotional and physical fallout of this hideous disease, you are most definitely not alone on that front.  there is a great support site on the healthunlocked site for endo, here's the link... http://endometriosis-uk.healthunlocked.com/

X
Ducky

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fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


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## Roodkate

Hi shippo, 

The gonapeptyl or sometimes they was zolodex, will reduce the endo so take away the hostility of the womb. It also then acts as the down regulating part of the IVF. I don't get bad pain post having an mirena coil some years ago. Don't know why when it's stage 4. 

Yes I agree, I would have thought you'd be on either prior to trying the IVF?

I also have a 5% or less chance of the IVF working.

Sorry for your troubles pet  

X


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## Shippo

Thank you all for your replies, and thank you Duckybun, there is a clinic near me in the link that you provided. I will be asking my doctor.
My Lap was just a diagnostic one, but after my first admission back in hospital, my gyne came to see me, to say that everything as too mangled to try surgery.  She said it was too dangerous to my uterus, as I want children.
I will defo look at the support link you have posted too.  I need all the support I can get at the moment.
As I mentioned, I have my first consultation at Sheffield Care this Thusday with DH and maybe they will suggest the menopause inducing drugs?  I'm not sure what to expect, but am going with my mind open. I really want my own child, and this endo has totally taken over my health, mind and my life!
As for the symptoms Roodkate, apparently they can differ widely between sufferer's.  It can happen that some one even with stage one can have horrendous pain, and someone with stage 4 has no symptoms.  I just happen to be in excruciating pain every month.
I have got to say, my doctor and gyne have been fairly crap, but seen as though Sheffield has seen us so quick, I am going to see what they say to try move on with the best way forward to help try make my dreams come true.
Do any of you know when you're starting your IVF?
I know it sounds like our chances are slim, but there are some encouraging things on here, lets hope we all get some good news!
I will post again, once I've been seen 14/02 at Care, to let you all know what they recommend
Thank you all again for your replies and support
Shippo x x x


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## Roodkate

Marvellous news!

My IVF consultant said there is no way to predict the stage of endo to your chances as she had seen it all, ie stage 4's who had no problem getting pregnant. Anyhow it was her who put me on the gonapeptyl. However the gyno was in the same hospital and they are a specialist centre. 

Be sure to ask Sheffield about those drugs.

Best of luck, talk tomorrow when you have the next stage covered  

I am stimming at the moment, not too much happening in my easter eggs on the 7 day scan, but enough to carry on, next scan Friday....  I am on max dose due to my s**t AMH. So at least I am not a non responder and still in the game  

 Kate x


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## Shippo

Hi all
I have just left Sheffield after our consultation. Good news and bad. It seems my AMH is really low (2.7), which obviously means there's not many eggs left in the basket! Dr Shaker was really positive though and said he's had successful out comes with ladies in my situation. I've been given prostrap (or whatever it's called!) for 3 months and then straight to long protocol.
Feel good that something is happening and I won't be in as much pain in the mean time. 
Let me know how Friday goes for u Kate, fingers crossed they've responded like a good 'un and U've U've got a batch of good ones. My dr said today, it only takes one good one. Thinking of u
Shippo xxxxx


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## Roodkate

Fabulous news, 

Prostrap is gonapeptyl, hello hot flushes !

Mine is lower than yours and by the state of my stomach something is growing in there!


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## duckybun

Hi ladies,

Kate how did Friday go?

Shippo, when do you start with the prostrap?

X
Ducky


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## Roodkate

Hi ducky,

Well have 3 follicle per ovary. Problem is best 3 are on rt ovary which has gone back to where it was found on my op, behind my uterus. Meaning they may not be able to get those eggs. Now I know the reason for my rt sided abdo pain. On the last scan they said they  could not see that ovary because my bladder was still to full.

Only one of those 3 on the lt was looking viable. So stimming for a few more days to see. Next scan tomorrow am. Going between thinking you only need one to what's the point....

DH has a flu. What more could go wrong?

Kate


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## Shippo

Try keep positive Kate, I knows it so hard when it feels like everything is against you. One if my ovaries and gone round my uterous too, plus there is nothing but Endo completely covering it. 
I'm at my own Gyne on 22nd and am gonna ask for the injection then, otherwise I'm waiting for doctor to refer me back. 
These people have no idea what waiting and time means to us girls!!!
Come on ur Follies Kate, rooting for u so much!
When are u back to the clinic Duckybun? 
Really big wishes to u all xx


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## Roodkate

Shippo,

Well the secret life of ovaries....right is back out and now left is behind uterus. 3 on each, with one on each side looking very good. Doctor today thought they would not have much problems going after the pesky ovary but may need GA for EC.

Trigger tonight and EC Wednesday.

Eeeeaaakkkk.....

You only need one, you only need one, you only need one


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## Shippo

That's great news Kate!! Am really pleased. Come on good egg! Lol. 
We only do need the one, hope ur managing to rest and please let me know ur progress!!
Will be thinking of you Wednesday on ur egg collection
Shippo xxxx


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## Roodkate

Shippo,

Home from ec, they could not get to the missing ovary, however magic 5 eggs from the other one, can you believe it...   

Fertilise, fertilise, fertilise


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## Roodkate

Well shippo and ducky,

4 fertilised and two went back in the morning..... 

So now we wait....

Hope you are both well


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## duckybun

Aw Kate!!! Brilliant news. Well done embies xxx     here's to them burrowing in nice and safe xx


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## Shippo

Hi girls! On been on here for a few days as another horrendous period ending in doctor giving me morphine at home. I'm ok now though.
No prostap yet, specialist said it has to be given in first day of my period, so now I'm confused. Will ring doctor later.
Wow Kate, that is so fantastic news! I hope ur 2ww doesn't drag into eternity!!!
I have everything crossed for you and hope ur not tortured in ur wait. Keep in touch! Xx


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## duckybun

blinking hell shippo, you are having a right nasty time of it! keep on at your doctor and get them to phone your consultant if you think he said something different tot he timing of the shot than they're telling you.

Huge hot water bottle hugs (dont think I'm qualified to administer huge morphine hugs    )

Hope you're feeling better and the aul witch puts herself back in her box and leaves you in peace soon.

Kate   hope the dreaded   isn't being to long and draggy on you, everything crossed for you xx

x
ducky


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## Roodkate

Shippo,

That sounds horrendous  .

My consultant said day 1-5 of period to start prostrap. It's only to definitely rule out pregnancy as its tetrogenic.

Shame the sooner the better for you to start pet, get some relief from it. I must say I' m pleased to not have hot flushes anymore! 

I have alot of discomfort since EC. You should not have pain relief after, only paracetamol   and I like my pain relief!  Today 5 days post I went to a conference and by the end of the day I was in pain   I hope my embies are okay...

Take care shippo


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## Shippo

Thanks girls. Really know that you both understand what it's like. So many don't!
Can't get in the docs till 6th of march which is ****e! I'm going to be so upset if my stimms don't start in June. 
Anyway, hope ur not too uncomfortable Kate, and hope its them nestling into you! I really hope the time is passing ok for you!
Best wishes
Shippo xxxxx


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## Roodkate

Don 't have unprotected sex and beg them to start it!?

From my calculations it would stil be June even if you have to wait a few weeks. Apparenty IVF works better in the summer!

I am signed off for the week, swelling and discomfort, it's all good when I lie down!


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## Shippo

That's great advice Kate, I will definitely be insisting on having it. York Gyne said it can only be administered on day 1 of your cycle, so I rang Care and they said just get it as soon as possible.
Sounds like ur gonna have to lay down for a while Kate if that's how u can get relief! Get some books/mags and try take it easy and try not let ur head think everything!! 
When do you take ur test/end of 2WW? 
Come on Embies! Get nesting!! 
Shippo xxxxx


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## Roodkate

Shippo,

Official day is next friday, may do test before, we'll see! Am watching alot of tv! Damages- fabulous if you have not seen it before....so am in the day bed, trying to change beds at least! And am going to watch greys anatomy and then back to damages......life choices


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## HoneyCupcakes

Hi Shippo,

Just thought I'd jump in and say that I have grade IV endo as well. After two ops which included having my left tube removed I was eventually put on a down regulation drug called "Prostap" injections for 3 months. This helped shrink my cysts, and have been told they cant be seen any more. The down side to this drug what I found is that I got lots of hot flushes, but am glad I went on in.

The next tx I had I got 15 follicles and  15 eggs which was such a different from the previous cycles of 6 follicles and the 5 follicles. I also think the meds helped with the Prostap. I was on 300mls of Gonal -F.

I am now booked in to have immune tests in Athens due to no bfp, but I would go back on Prostap if the cycts have grown back I felt that confident that it helped.

I hope this gives you some thing to look into that could help you.

Good luck with everything x


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## Romeo123

Hi Shippo

Sorry to hear you are feeling so down, however I defo know how you're feeling. I had a laparoscopy in January and found the endometriosis was really bad and again too difficult to sort through keyhole surgery. I saw my consultant at seacroft hospital last week, at this stage feeling positive about having IVF only to be told that the chances of it working are only 1%, I was devastated. On top of that I must have surgery to try and put things right which requires removing both tubes, a cyst, unsticking things etc.

I'm guessing from what I've picked up from your post that you are probably in the same boat as us and don't get any funding in your area? Which makes the decision all the more difficult as you have no option but to consider to financial implications even though you really don't want to have to think about the money when making such an important decision. I've seen lots of positive things about Care Sheffield and there success rates are higher than Seacroft, however I'm not sure if this may be because they don't take on as many complex cases as Seacroft do which would obviously have an impact. So far my experience with Seacroft has been good, I know mrs Sharma one of the leading consultants there has a bit of a reputation of been abrupt on the plus side she has a reputation of been one of the best in her field.

I've also seen a lot of posts from people travelling abroad which I would not be adverse to if I felt it would improve our chances of success.

I'd be interested to know how you get on at Care.  By the way are you in North Yorkshire, I'm not sure if you're aware that the policies for funding are due to change on the 1st April?

Good luck.

Xx


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## Minako

Hi Ladies,

Sorry for interrupting your thread. It's just that Roodkate said she could only take paracetamol after EC. I was in a lot of pain after mine and paracetamol made no difference so the nurse gave me paracetamol and codeine which did take some of the edge of the pain. You can buy the stuff at your local chemist, ask for cocodamol,  though you are only supposed to take it for 3 days cos it can be addictive    

You maybe have already tried this, but just thought I would say.

Min


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## Shippo

Hi Ladies
Thank you all for ur advice and comments. Thank you for the info on prostap HoneyCupcakes, I hope I get some good follies in June like you. I've heard about the hot flushes, but I'm certain I can cope better with them, than my debilitating pain every month! Just hope the docs will give me it on Wednesday. 
Romeo123, you're right, I'm actually from York, so no funding at all. We've gone to Sheffield as Leeds has taken so long to even send us a letter! My endo is damaging more and more of me every month, so I litterally don't have time to wait around! 
I'm interested in the changes in April? What are they? 
How u doing Kate? Have u caved with a test? Not long till Friday now. Been thinking about you alot! Hope ur a bit more comfortable and still staying postitive. 
Duckybun, how u doing? Xx
Love and best wishes to you all
Shippo xxxx


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## Romeo123

Hi Shippo

I don't actually know what the changes are and to be honest I don't think anyone does at the moment, I contacted our local PCT http://www.nyypct.nhs.uk/AboutUs/ContactUs.htm as I'd heard changes were likely, they said come April funding MIGHT be available and to contact my GP at the end of march as they might know more then. We did briefly look into Care but I just felt that we might be better sticking with Seacroft as I was originally referred there and the main consultant there that did my Laparoscopy so her knowledge of my issues hopefully will be a benefit, however saying that we are now waiting for another appointment to see her which is likely to be April now and I'm scared that everyday my AMH will be getting lower and lower. How long have you been waiting for an appointment?

Xx

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fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


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## Roodkate

Hello ladies,

Back to normal!  just 2ww psychosis.....no shippo, I have not caved and tested yet.......yet....BFPs would only possibly show from tomorrow? Think a bfn would only send me loopy when it would be too soon to be conclusive.


G'luck for Wednesday, I hope they start your injection, fingers crossed  

Xx


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## Shippo

I am very proud of you for not caving Kate! Must be so flipping tough though! Glad ur not going round the bend too! ( well, as best as you can!) Am very excited for you!!! 
I'll post again about Docs on Wednesday. Make sure u update when you know Kate 

I've been waiting to hear from Leeds since November 2012, and got a letter in feb 2013. I self refered to Care and was seen a week later. My costs were the same for either clinic, so I thought if I was paying private, I might as well get private treatment (in Leeds, you join the queue no matter if self funded or NHS)

I'm very impressed with Care so far, just need to have this blinking injection!! Grrrrr. I must learn some patience!! 
Fingers crossed for everyone xxx


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## Romeo123

Wow Shippo that's a long time to wait no wonder you lost patience, I know what you mean about the paying private part I also has those same feelings, I'm very confused, don't know what to do for the best.

Good luck with Care x


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## Shippo

Hi all. 
Get my prosap from the chemist today. I need to see when ur can be injected. 
At the nurse today, so hopefully it'll be my first one day. 
Big day today Kate. Thinking of u and sending u all the baby dust/luck/fingers arms and legs crossed for you! 
   
Shippo xx


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## Roodkate

Shippo,

Its a  

Started POAS on Wednesday so know what was coming.  

I'll wait till review appointment and see what they say. 

Hope you got your injection.


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## Romeo123

Roodkate,

Really sorry to hear about your BFN, have big glass of wine tonight.

Big hugs and positive thoughts for the future xx


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## Shippo

I'm gutted for u Kate. Stupid thing to say, but I hope ur ok. I hope they'll give u some sort of answers?
Got zoladex today (not prostrap) so see if it helps for 3 months. 
Thinking of u Kate. Big hugs and kisses to you xx


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## Roodkate

Thanks shippo,

Zolodex is the same so no worries there.

Have a very sore head today   back to bed for the day me thinks.....


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## Shippo

How are you Kate? Been thinking about you a lot! Have a got any answers from the clinic?
Big hugs to you  
Shippo xx


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## Flossy996

Hi shippo
I'm sorry to hear your sad story, it's such a difficult thing to go through but remember you are not alone. You have all of your fertility friends here and even though each of our problems are different we all want the same outcome and go through the same emotions. 

I'm just about to start ICSI at care Northampton and like you I am having to pay for everything!! Me and my DF have worked out that it'll cost about £6000 and this includes the blood tests, SA, consultations, drugs and actual IVF proceedure. Ours is more expensive because we need ICSI and not normal IVF but we have saved money by using test results from our GP for certain things. 

Let us know how you get on and if you need any advice or just want to chat you know where we are 

Flossy x


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## Shippo

Thanks Flossy. Good luck with ur treatment, I hope all ur dreams come true  xx


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## lyzzibeth

Hi Claire, I realise your post was a long time ago but just wondered how you were getting on? I'm in a similar position. Helen x


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