# How to make that decision



## Twopence (Dec 14, 2008)

Hi peeps

I have been searching this site for a while and hope I am now posting in the right place. I would love some advice please.

DD was born in Jan 2010 and she is my world. I can honestly say that hand on heart. I am obsessed with her   and love her more than life itself. For a number of reasons (like so many of us) I would love to give her a sibling. I would also love to have another child to experience this whole amazing thing all over again. I am sure I am not saying anything new to any of you.

I concieved DD after being told it wouldnt happen without IVF/ ICSI (due to DH's sperm). I tested positive after having only two AF's after extensive surgery for endo. However, we have been ttc since October last year and no hint of anything. I am having a lap etc next week and my Cons has said that if my tubes are blocked he will remove them as we will need  IVF and my tubes removing to help any implantation. I have also had blood tests and sperm tests (DH) with another Cons who wont operate with me but liases with the other bloke. I have so many questions and dont know where to turn.

I think I stupidly believed those 'helpful' people who said that because it happened once it would happen again, those who know nothing of my situation and know nothing of the pain of IF and say this rubbish as they dont know what else to say and feel awkward.

We originally said we wouldnt have IVF for a second but now I feel that my want for another child over rides this. 
I assume that as we already have DD we wont be eligible on the NHS.
How will I feel having my tubes removed - it feels like the end of the road for any ttc naturally and how would we get the money for private tx?
How many attempts would we have before giving up?
Will we miss out on no.1 ttc no 2?
Shouldnt we just count our blessings?
Should I ask him to keep them there 'just in case'.
When do I know I am ready to move on
How can I get over the fact I will never run my hands over a swollen belly again feeling those little kicks from the inside?
How can I ever accept that I wont hold another newborn of my own in my hands?
When will I ever stop feeling jealous of other people and their good luck at getting pregnant at what seems like the blink of an eye!!
When do the tears stop?
When do I stop feeling guilty at not being able to give DD a sibling?
When can I just sit back, enjoy what I have and let go?

I am sorry for the waffle ladies, I need a place to put my thoughts down. Thank you for reading even if you don't reply.

I know how lucky I am for DD and for that I am eternally grateful.

Love and babydust to all xx


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## Caddy (Feb 14, 2006)

Hi SHRIMPER.  


I remember you from the endo thread.    Evil thing that it is..... I jut hate it. (endo, not the thread!!!)


I am afraid I cannot answer all your questions, but would urge you to think about what surgery you are going to have done and who you trust to do it. I only say this as I have had a bad experience with a gynae who was not an endo expert and whose attitude was just to remove things instead of trying to remove the endo and free it all up. I then found an excellent con and so wished I had been more questioning.
Do your tubes really need to come out? Can the endo or blockages (if there even are any) be removed? It is harder to do than a simple removal but gives you the option of ttc naturally.
Why does the con think you will have to have IVF? It could be that a further endo clear out will mean that you can ttc again.
Have you thought about immune issues? Many many endo ladies have them as it is an autoimmune condition itself. Maybe ttc naturally with immune help would be an option. Even if you do have IVF then keeping your tubes would still be nice!!!!!!!!!!


Your wish for another child is just normal and not selfish in any way. Other people just have as many children as they want so why should we think any differently.


I truly believe that investigating all avenues so you do not have any regrets in years to come is so important.


It is so hard because when you are pregnant after all that trying you hope all the angst is behind you and for some people it is, but for many the longing continues.
Try not to be too hard on yourself. Many of us on here echo your sentiments.


Big hugs.
Caddy x


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## Twopence (Dec 14, 2008)

Hi Caddy

Thank you for your post, I really appreciate it   I have printed off your questions and will ask my Cons tomorrow. I see a cons for the fertility (he wont touch me due to the severity of the endo surgery wise and then i have an endo specialist surgeon).

They do both say very different things and so I will also take your questions with me on Monday before the surgery. DH and I are currently sat here trying to work out if we would take out a loan for IVF or just leave it. I think I would probably be devestated if we didnt at least give it a go.

Hopefully we will get a few more answers tomorrow when we have seen the first cons.

Thanks again. And thank you for being so understanding   

xx


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## Caddy (Feb 14, 2006)

Hi Shrimper.


Good luck with appointment tomorrow.
It is so hard to know what to do as fertility cons have one approach and an endo specialist another.
When I had surgery initially I just went with the gynae advice. She removed my left tube. When I was in agony months later I saw one of the best endo specialists in the country who queried why she did not try and unblock my tube, which made me feel sick to the pit of my stomach that I had maybe lost it unnecessarily. He did some great surgery over the course of a few ops in order to clear the endo, relieve pain AND preserve my fertility. I then had IVF shortly afterwards at the ARGC and got a BFP (after three crap cycle elsewhere prior to that - again another badly thought out decision). I think the immune treatment there is what swung it for me. I then conceived my second daughter in 2009 after a failed cycle there the month later, I think because of all the immune drugs still in my system.
If I were you I would make it clear that you ideally have not completed your family and want your fertility preserved as much as possible and only tubes removed as a very last resort if they absolutely cannot be saved. Be careful what you sign up to pre op.


If you do decide to have IVF then chose a clinic very carefully to give you your best shot as all the stimulation is generally not good for endo so you want the best chance of it working first time. I would look for one that is at the for front of immune treatment.


Let me know how you get on tomorrow.


Love Caddy xxxx


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## Twopence (Dec 14, 2008)

Caddy you are an absoloute gem, thank you so much.

DH and I have decided to take some money out of the house if we need t for tx so lets see what happens later. 

You are right, the specialists do have different priorities. The fertility bloke wont touch me surgery wise and the endo man says he is only here to sort out endo, not fertility!!

Am going to get it all written down and make it absoloutely clear that we want more children and tubes out only if no other option. I saw a friend today who Iwent to ante natal with and she is pregnant with her third (will have three under the age of two!!) and saw another who is pg with her second. then heard another has already had her second. Really brings back this IF cr*p to the front of my mind.

take care xx


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## Caddy (Feb 14, 2006)

Hi Shrimper!  


Can understand fertility con not wanting to touch the endo, but I think it is a bit poor of the endo con to say he is only there to sort out the endo. He is there to help you and at the moment that includes trying to get things in as good a position as possible for feeling well and ttc. I think a lot of cons would just like to do hysterectomies, but even after that drastic surgery people can still get endo. It is not a very well researched area and I have found most cons are not very bold in wanting to excise the endo rather than the surrounding tubes/ovaries etc. I was all set for a bowel excision after my last surgery, but they managed to clear it off, but he did say to me once you are finished having your family (which seemed like an impossible dream at the time after ttc for 6 years) then I would need more surgery. I just do not feel ready for that yet and will keep going until I really need it. It is horrible to feel endo stuff happening again though. My first rubbish fertility con and gynae said it would go after having a baby and GPs have told me that too. I knew from having read around that that was not the case and it certainly is not.


Re the IVF, I am not sure where you are in the country but I highly recommend the ARGC in London. There is a huge difference in what you will get in each clinic. The ARGC scan you every day, do bloods every day and will do immune treatment too.
In that regard, ask your endo con if he is going to do a hysteroscopy during surgery as the ARGC like you to have one before IVF. I know I have had them before during surgery.
What is the con planning to do? Are you having the surgery because of pain or to check what is going on? The mere fact that you have not conceived may not mean blocked tubes. It may be an immune issue or something else entirely. I was ttc for years with open tubes and I am convinced it was because of my immune system.


It really is so rubbish having to deal with IF again. It just never seems to go away. However there are so many positives for you, the main one being the fact you have had your gorgeous daughter, that would point to there being a great chance of having another.  


Oh for a simple life of deciding to have a baby then having one!!!!!!!!!!!!!


Lots of love,
Caddy x


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## Twopence (Dec 14, 2008)

Caddy I cant thank you enough for your help and advice.

The last time round the Cons cut off all the endo and did a bowel resection. There was no choice with that as I had a stricture around the bowel and was literally months away from it rupturing. I was very lucky to have the (seperate) bowel surgeon that I did as I didnt end up with a bag. A cole-rectal surgeon has since told me that I only didn't get a bag because of the surgeon I had so I am very greatful for that!!

The cons has said he will remove any small scale endo but otherwise he is literally there to do a hysteroscopy and lap and dye. He is really reluctant to do much else due to the previous scarring and everything that went with it. It was very extensive last time and there isnt much left to take away elsewhere. Both tubes were blocked last time and he did sorth them out soI think in all honesty it will be a last resort.

We saw the other cons today. My blood tests were OK in that I am ovulating. Anything over 20 is good (of what I dont know though) and I scored 32. Apparently if it hits 40 they think someone has relaesed two eggs!!

However, DH's SA was pretty rubbish and he has recommended ICSI for us based on the result. Only 8% decent swimmers which is a decrease on last time (10%). He suggested the Lister as that is where they send people.

We are based North of London in Herts so will look at the Lister and deffo the AGRC as you suggested. Where in London is it?

Thanks again for all your advice and help.

Lots of love 

Shrimper xx


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## Caddy (Feb 14, 2006)

Hi Shrimper.  


Hope you are ok and not feeling too sore.   Not nice.


Great news that you are ovulating. The levels they measured are progesterone. 


ICSI might not be a bad thing anyway. We had ICSI at the ARGC even though the sample was ok because of repeated IVF failure and it worked for us! Having said that the approach the ARGC take is incredibly thorough and tailor made to the individual. Mr Taranissi who runs the clinic reviews all the files personally every day and advises each person accordingly, so there are no set protocols like lots of other clinics. He also believes in treating immune issues quite aggressively. It can be quite chaotic though so you just have to go with the flow!
I do not know so much about the Lister. I know they take ladies who have raised fsh levels and have a slightly different approach. There are also highly regarded.
I think the ARGC have the edge when it comes to success rates.
If i were you I would go for an appointment with both clinics and see how you like them and what they advise. The wait time for an appointment can be longish at the ARGC so better to book an appointment sooner rather than later.
The ARGC is in Upper Wimpole Street near Marylebone High Street. They have a website too.


Let me know how you got on today.


Lots of love,
Caddy x


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## Twopence (Dec 14, 2008)

Thanks for the info Caddy. We will deffo check out the ARGC and marylebone isnt to rubbish for us to get to.

Surgery went ahead yesterday. I lost my left tube in that it has been sewn off. This is because it was so knackered that IF i were to get pg then it could cause problems i.e. ectopic. My tube was actually stuck to my bowel and womb and any further surgery would recover a colostomy bag, even if I were to have a hysterectomy to put all this endo nightmare behind me. It would only be a temp measure but he did say I could just do hormone tx until the menopause such as the pill or mireva coil. 

He wasnt sure where the constant bleeding comes from but could either be part of my womb he couldnt see properly (C sec scar) or the mass of jumble round my left tube as there was brown blood there but he wasnt sure if it was a cyst he burst and then repaired or someting else.

Cons suggested IUI but he isn't a fertility expert. He said they can wash the sperm but I dont know much about it and will see what the other chap says. 

The surgery findings also make me wonder if a pg is too high risk so again, will talk it all over.

Thanks again for all your support, you are a star.


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## Caddy (Feb 14, 2006)

Hi Shrimper.


Sorry for the slow reply. Tend to look at FF on my Ipad and cannot seem to post on there.


Glad surgery went ok. You always dread what they are going to say afterwards, but at least you have one tube left. I had the left tube removed in 2005 and still conceived.
If I were you I would definitely have appointments with the ARGC and the Lister and see what they say re IUI, ICSI and chances of success etc. I think immunes may be an issue for you too just because of the endo.


I am feeling a bit down in the dumps today as had really unusual cycle for me, spotting 8 days post ovulation (dpo) (not that I had that before when pregnant) and various other symptoms, so being an idiot my mind started racing and did a million tests and despite one incredibly faint one on 11dpo which was probably nothing, they have been all bfns with none of my usual signs of AF. Now 2 days late, still bfn but spotting started. I am never late when I know exactly when I ovulated, so goodness knows what went on there.
Am thinking of giving the prednisolone a try this next cycle. All a bit left up to me really as I am abroad at the mo and you can get this stuff prescribed easily, but left to you really when and if to take it. Oh I don't know.... It is never straightforward.


Lots of love,
Caddy xx


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## Twopence (Dec 14, 2008)

Hi Caddy

Sorry to hear you were feeling down in the dumps.   Hope you are feeling better now.

Is there any further news on the HPT's? 

Where are you based now then? And what is Prednisolone? Sorry for all the questions and my ignorance!!

Will take your advice and spk to the clinics. DH and I are going to go to the fertility show in November to see if we get anything useful.

I suppose we just call and make appointments. Hopefully DH can get time off work.

Good luck to you Caddy and thanks again for all your help xx


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## Caddy (Feb 14, 2006)

Hi Shrimper!  


Af was two days late in the end but felt like an eternity.   Got a bit carried away. Mental after 6 years of ttc no.1!!!!!!  
Prednisolone is a steroid prescribed to suppress natural killer cells that I have taken before during IVF cycles. I am out in the USA part of the time and had it prescribed here, but it is all a bit casual as you can buy half this stuff online. May give it a go this cycle and see what happens.
Also I have got an app with Dr Gorgy in London to discuss immune treatment whilst ttc naturally in a month or so, so I will see what that brings.
You got anything lined up yet?
Hope you feeling ok now post op. I just dread more surgery.   Being pregnant is the only answer!!!!!!!!!!!!!!   


Love Caddy x


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## Twopence (Dec 14, 2008)

Hi Caddy,

If my AF is seconds late then I get twitchy. Not helped that it has been all over the place since DD but as soon as day 28 hits (I used to be very regular) then thats it. Have wasted a fortune this past year   on HPT's!!

DH and I are going to the fertility show and going to a couple of seminars. One on endo and one on male fertility as these are both our problems. After that we will probably get appointments at the Lister and ARGC just for a chat. You dont happen to know if you can visit either at the weekend do you? I think the ARGC is prob first choice at the mo but it is good to get comparisons.

Feeling much better post op thanks   Just tired. Or is that from being a mummy   

Take care love Shrimper xx


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## Caddy (Feb 14, 2006)

Yes being a Mum is knackering!!!!!!!!  But totally brilliant!    


I have not had a lap since having DD1 and just cannot begin to imagine trying to recover and look after little ones. Not good.


Your plan sounds like a good one. I always like to have a plan as it makes me feel proactive (hence the Dr G app). Think my DH thought I was mad, but he just goes along with it. Poor man.


Don't know about the Lister, but I think from recollection that the ARGC only do apps weekdays. I know they do telephone apps, but I always prefer face to face really as I somehow feel I cannot take it all in over the phone (or maybe just because I be thick  ). The ARGC thread are good for asking any questions like that as they are always busy. The great thing about the ARGC is that once you have done a monitoring cycle with them, as long as your hormone levels are ok you can get going right away.


Be interested to hear what they say in the endo seminar. I just wish they would put FAR more funding into research about endo because most GPs and a lot of gynaes are so ignorant about it. The amount of times I have heard them say "once you get pregnant it will go". It is like something out of the ark. Yet it affects so many women with pain and infertility. Argghh....don't get me started. 


Anyway, enough ranting and time for bed.


Love Caddy x


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## Twopence (Dec 14, 2008)

You are like me, once I start ranting about the evil endo then I am done for. Could go on forever!!

When i had the last of my stitches removed today there was a student Dr watching. I started ranting on about how this was all due to endo and Dr's fobbing me off for years and if any woman ever comes to him with painful periods not to fob her off with the 'it will get better when you have had a baby' line and to take her seriously. I then listed all my side effects. He was only there to observe!!!

Think he thought I was mad but if he remembers me then hopefully it will do some good   

Thanks for the THREAD ADVICE. WILL HOP OVER AND VISIT THEM asaP

THANKS


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## Caddy (Feb 14, 2006)

Good on you. The more people know and listen the better. I still cannot understand the ignorance despite endo being so common. I suspect because it is a "woman's disease", is not fatal and is a bit like a period pain (yeah right!!!).


Glad you had the stitches out. I have mainly had those ones that dissolve. When I had my last c section my con who was totally fab just told me to snip the end myself and pull it. It was great. The silly local midwife was horrified when I told her.    Once you have had tons of laps it does not really phase you anymore.


Am deffo thinking of using the prednisolone this month to see if it helps.   


Love Caddy x


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## Twopence (Dec 14, 2008)

Good luck this month! Would love to hear sone good news.    What does it do then? Sorry for the ignorance    

First lap was dissolvables, 2nd was staples, C section was like a long thread with the ball thing on the end and this last lot were dossilvable. Only they didnt dissolve so Dr said I had to have them cut out!

Currently munching my way through a box of choccie biccies. Doing wonders for my diet. Not!!

Good luck this month   

Love Shrimper


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## Caddy (Feb 14, 2006)

Mmmm.... chocs.....
I just eat them if they are in the house. Terrible. Although I seem to be able to stay away from the girls' choc buttons!!!   Don't know why.
I think some chocs are just the order of the day post lap!  


The prednisolone suppresses natural killer cells which can interfere with fertilisation and implantation. It is worth a go I suppose. 


Here's to good news for both of us.        


Love Caddy xxx


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## Twopence (Dec 14, 2008)

Thanks for clearing that up!! Have heard it a few times on this site and wondered what it was.

Have posted a few times on the ARGC thread now and everyone just totally seems to rate it. 

However, how much do you think we would need to budget for? I have been told between £12k and £20k on there and that seems a bit excessive to our budget!! Dowe have to have all the scans that people are talking about up to 12 weeks? I would get some done by referral from the GP anyway given my circs.

Thanks

Shrimper xx


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## Caddy (Feb 14, 2006)

Hi Shrimper.  


Sorry so slow to reply. I tend to read on the Ipad but I cannot seem to post on there. Most annoying.


Re the ARGC prices, it just depends on what you need. Their ICSI is no more expensive than a lot of places (very roughly about 3,500, but I am a bit out of touch). You then need daily blood tests. Scans are included I think up to a BFP. The two real killers for me have been the cost of drugs as I always need a really high dose and immune treatment. You will need full immunes and that is about £700 just for the test. If you need humira then that is about £800 (raised cytokines). Re natural killer cells, they can treat with steroids, but may use IVIG which is really costly (over £1200 depending on the dose). I think they are also using intralipids there too which are much cheaper, but I am afraid I have never had those so not sure on price.
It is one of those places that you just have to go with the flow and get it all done in order to give it your best shot. Mr Tarannisi reviews each file personally every day and the treatment is tailored to you as an individual which many places are not, so I guess you get what you pay for.
All in all with a high dose of drugs and full immunes I think £10,000 is not unrealistic. To be honest the cost of scans post BFP are almost neither here nor there as you wont have loads, maybe one a week until 10 weeks and blood tests to check on your levels.


You got any apps lined up yet?


I have started the prednisolone, but no surge yet! Just as well as DH has been away!!!!!  
Also seem to have another bout of cystitis. This will be the third this year having only ever had one previously. Not been to docs yet (did for last two and got antibiotics) as trying a few home remedies cos not too bad. Last thing I need when ttc. Always post    which is even more annoying!   How many more ttc obstacles does a girl need!!!!!   


Anyway, enough moaning.
Love Caddy xx


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## Twopence (Dec 14, 2008)

Hi Caddy

Sorry to hear about the cystitis. How annoying!! I am on anti-biotics for life after my big lap   I can no longer pee by myself and have to self catheterise and am prone to infections. I have been hospitalised with them a few times.   I suppose the plus side is that when I do have an infection I dont feel the constant urge to pee which i used to find so annoying with cystitis (as I have no sensation of needing to pee).

We really need to get our finger out and book some appointments. Unfortunately we have had a few large problems arise here and it has gone on the back burner. I have to say though, the ARGC still sounds very tempting   Thank you for your cost advice. Do you know if you have to have the weekly scans post BFP? (assuming we get there of course!!)

Where has DH been? Is it work? Hope you dont miss him too much.

Take care xx


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## Caddy (Feb 14, 2006)

Hi Shrimper.


How is it all going?
Me got imminent AF (always depressing, although should be used to it!!!  ).
Tried the prednisolone this month to no avail although did not get much action in at the right time as DH was not here.


Hope you are well and making progress with your plans.


Love Caddy xx


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## criverisland (Oct 20, 2011)

Sorry shrimps, think only half my message posted. Chin up anyway hun, i know how much it hurts   send me a private message if you want to talk anytime.

Claire xx


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## Twopence (Dec 14, 2008)

Hi Caddy

Sorry to hear AF is on her way   MIne is just going. Flipping painful but hoping that was done to recent Lap!! Seeing cons tomorrow so will ask him.

Thanks for your offer, may well take you up on that. Do you have a spare half an hour to read all my probs   And you prob have enough of your own.

Anyhow, best be off, just cooking DD a pasta sauce for tomorrow!!

Take care

Love Shrimper xx


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## Caddy (Feb 14, 2006)

Hi Shrimper!  


How is it all going?
Nowt to report with me really.
You got any plans for treatment in the New Year?
I am seeing Dr Gorgy in a couple of weeks so it will be interesting to see what he says.   


Love Caddy xxxx


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## Twopence (Dec 14, 2008)

Hi Caddy

Sorry for the delay in replying. Has been made here I just dont know where to start!!

Hope you are well. Any news yet?

Love Shrimper xx


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