CARE Fertility Bulletin Board

FlossieJones · 19 Feb 2013

Hiya Folks,

I'm new to the board and as you'll see by my posts (no laughing!), very new to this whole IVF thing. To be quite honest, I'm scared stiff but quite determined all at the same time. I posted in the general forum asking for opinions and advice on Care-Manchester and got three lovely responses and am looking for more. Best get a cup of tea for this one. It's a tad on the long side.

If I tell you about me then hopefully I might find some of you who have experienced some of the same. What I could use is some support from women who know what they're talking about, having been through it themselves. I have a tremendous support network around me and I love them all dearly but they're all very fertile and functional and sometimes, I wish I had people in the know to talk to for a bit of guidance, maybe some moral support and definitely some constructive opinions and advice.

A bit about me: This probably WAY too much info! I feel a bit strange telling all this to people I've never met but after what I've been through my whole life I'm pretty used to talking about this to strangers! Not to mention having had so many hands down there, there might as well be a guest book and a pen on a chain attached!

First diagnosed with endometriosis at age 21. I was put through HRT to try to sort it, then put on every type of the pill known to man to try to regulate and lessen the severity of my periods, all of which had weird side effects. Around the same time I had a diagnostic laparoscopy to confirm endo. A couple of years later I was having positive pregnancy tests and severe pain so they rushed me in thinking it was ectopic. It turned out to be a massive cyst on my right ovary which ruptured on its own taking half my ovary with it. There were complications with surgery and I vowed never again to be cut open. For the next 20 odd years I dealt with it with pain meds and being rushed into A&E every second or third month. In the 80s and early 90s they thought that to help with heavy periods they would give you a D&C. This helped the next month, but certainly not with years of subsequent scar tissue! So for years I suffered and kept getting told by doctors that IF and when I wanted a child I would need to get the endo sorted and probably need a lot of assistance.

I was always the girl who wanted to be a career girl. I always thought I would have homes all over the world, do whatever I wanted, never settle down, never get married, I would be the crazy, eccentric and glamorous auntie to all my mates kids, swan in, bring them lavish gifts, pack them full of sugar, wind them up and then swan off again, left with their parents to cope with, back to my clean and quiet downtown flat. This was still the case until I met my Husband when I was 35.

We're both only children and I started off on our first date with, "I can't have kids so lets just get THAT into the open from the get go". He responded with "I never really wanted kids, so lets not even worry about it". Great! That's me sorted! Waiting until 35 to really settle down has had it's merits but also it's pitfalls. As we were planning the wedding I was never supposed to be having we both started thinking about how we had changed in ourselves and how not only would our child have the greatest Grandparents in the world, we would make pretty damn good parents. It was then that I decided to once and for all, bite the bullet and have the long awaited surgery to remove endometriosis.

In 2010 I had another diagnostic laparoscopy to draw a road map of where they needed to be and what they needed to do. Three months later I had removal of stage 3. It was on both ovaries, all over the pelvic area, there were adhesions trying to fuse my ovaries to my uterus and there was slight bladder involvement. Surgery was successful, it was all removed and I started having normal periods for once in my miserable period having career.

Fast forward to 2012 when we're married, have a great family, friends, home and careers and the periods start mis-behaving themselves again. Another laparoscopy is done with minor removal of endo, a dye test shows my tubes are patent and a hysteroscopy shows 'patchy' but healthy uterine cavity. They 'think' but don't know for sure that this may be adenomyosis but since it looks healthy there shouldn't be any reason I couldn't carry a child. The battery of hormone testing starts to determine why we've been together for five years, never used contraception and I've never been pregnant.

Five laparoscopies later my surgeon says that he would like to refer me to my local hospital for NHS funded IVF. I go, only to be told that indeed I don't qualify for IVF on the NHS because I'm now 41, even though I was referred when I was 40. The consultant discussed all my recent test results with me telling me that my FSH is high, my AMH is low and my progesterone is low. He very matter of factly gives me a 5% chance of conceiving with my own eggs and tells me to come back and talk to him seriously when I want to discuss donor eggs. He says that these results show that I'm not ovulating probably due to the fact that endo over the years has damaged my ovaries and therefore my eggs, leading to my progesterone being low, leading to my reserves being depleted and 'possibly' leading me to start the beginnings of menopause at age 40. He was utterly uninterested in doing any more investigations into all this, gave me the 5% opinion and I was dismissed like a naughty schoolgirl who had asked too many questions and wasted his precious time.

I have also had a consultation with the London Women's Clinic. The consultant there was lovely and we thought we might go back to him. After reading a story in the paper about a couple at this clinic receiving the wrong sperm and not knowing this until the child was born, we've gone off the nice man just a little bit.

So here I am. We're very pragmatic about our chances of a live birth with my eggs being 5%. We're also thinking that if we don't throw 100% of everything at our disposal at this 5% chance then we may be 50 year olds thinking "what if we had tried" or "there was something that we didn't do that we maybe could have". Coulda, shoulda, woulda. Those are the killers. I'd rather be the 50 year old woman saying "well, we tried absolutely everything we could, it didn't work, but at least we gave it all we had". Peace of mind is worth any amount of money or percentage as far as I'm concerned.

I have approached Care-Manchester after lurking on a few message boards and reading quite a few stats and articles. I'd like to stay in this country for a few reasons but I've seen MANY stories, positive and otherwise about women going abroad with fairly high success rates. I don't know which end is up right now. My head is starting to strangely resemble my backside. Kind of like those dog owners who start to resemble their dogs.

I'm partly in this mess because I decided to wait to settle down. I felt like I needed to get a few things out of my system and get to really know just who in the hell I was before I could be of any use to anyone else for a long period of time. I'm under no illusion that had I gotten my endo sorted earlier or been more open to the idea of marriage earlier then I would have better chances than I do now. I made the best decisions I could with what I had at the time. Now I have to live with those decisions and try my best to do what I can within the confines of what's available to me now. Incidentally, this is my only regret. I've had a good ride!

Any advice or opinion or help you can give with regard to Care or any other clinic, abroad or otherwise will help greatly. We've had some time to think of a battery of questions to be getting on with but if after reading my epic novella above, there are any questions you think I should be asking, I'd love to hear from you.

Thanks for your time and all the best to you!

Flossie xo

Briony · 06 Apr 2001

Hi Flossie,

Wow, that's some opening post! You've really been through the mill - I'm a fellow endo sufferer so can relate to much of what you say. It strikes me that you've got 2 paths at this juncture - try the own egg route, at the clinic which will suit you best in order to roll that dice and see what happens. The alternative would be to go down the donor egg route, but I can understand why this would be harder to accept straight off without having first tried OEs.

I'm sure some of the others who have been in this situation will be along to add their experiences. Another thing to throw into the mix for you (helpful, or otherwise?) is that sometimes endo can trigger immune issues whereby the body doesn't recognise the embryo as an embryo and more as an 'altered self' cell - so attacks the embryo to prevent implantation. Most of the Care clinics now do immune testing and protocols as standard I think, the 'Gold Standard' for immune issues is probably George Ndwuke who used to be based at Care Notts, but is now working at Zita West in London.

Something else to think about might be a procedure called 'Soft IVF' which one of the ladies who posts on here called Pika used, and has a lovely daughter as a result. She def used one of the London clinics, but I don't know which one off the top of my head.

Really good luck, I'm sure lots of other ladies will be along soon too!

Love Briony

Loui5e · 21 Oct 2004

Welcome Flossie, didn't want to read and run not got time to post properly but you've come to the right place. I'm a fan of Care Manchester it gave me my first Son I got pg on all 3 IVFS there but m/c 2 of them.

Welcome

Louise x

FlossieJones · 19 Feb 2013

Hiya Ladies! Thanks for your replies and for the warm welcome. Let me pose another question to you. I am more open to the idea of a donor egg than my husband is BUT he has agreed to do some reading, research and thinking on his own and we have agreed to re-address the issue if my own eggs don't work. As strong and realistic as we both think we are there are still niggling questions in our minds. Would you, knowing you had a 5% chance of a live birth (a term I don't particularly like, just seems a bit cold to me) with your own eggs, put yourselves through an attempt with the heartache and costs that go along with it? 5% is tiny. But to me, it's still 5% better than nothing. I know no one can make this decision for me, so I'm not asking for your help in that way, I'm just very interested in other women's thoughts.

Thanks,

Flossie xo

Briony · 06 Apr 2001

As you say Flossie, 5% is more than 0%. We used donor sperm as our chances of conception with DH were nothing, its not a decision I've regretted for a minute, but we had no alternative at that point. Lots and lots of couples want to try with their own gametes before possibly reassessing and moving to using donor. I think that's really understandable and human nature tbh.

Its such an individual decision - all I can say is that for us being parents was more important than using our own genetics. And although it seems like a monumental decision beforehand somehow once you've involved in the nitty-gritty of everyday parenthood it doesn't really have the same significance, something I know other ladies who've used DE have said. But it is a big decision that's for sure.

All I'd say about the 5% OE chance is to make sure you've got yourself as level a playing field as you can before you get going - so if you're going to roll the dice once possibly look into immune stuff, lining issues etc etc as much as you can to maximise everything as far as possible if you know what I mean?

Love Briony

FlossieJones · 19 Feb 2013

Absolutely Briony. VERY wise words. Thank you.

Elizabeth hope · 20 Oct 2007

Hi flossie, I loved the concept of the visitor book!! I felt very much like that. Endo diagnosed after 5 yrs of internals aged 25. I was thrown into the ringer go ivf straight away as I was trying and in the end it was that, that made them take notice. Anyhow, I really sympathise with any endo lady as not only do you have infertility issues you have the vile vile pains.

Long story short my first marriage ended, when I met my current dh I said immediately 'I can't have children', I laugh now at my bluntness so it's nice to know I share that with someone. His reply was, 'ok we can adopt'!! We didn't really imagine a) the relationship would go anywhere and b) we wld adopt. He already had a four year old son and in many ways I thought it would mean he wouldn't want anymore, therefore protecting myself from the heartache.

Fast forward to now, the 4 year old is 19 and we have another 4 year old son) adopted at 1) and an adopted daughter 18 months who has been home for 4 months. I can barely remember child free moments. It doesnt matter to me that i dont share genes with any of my children, im too busy loving them and too exhausted to care. My advice would be, listen to the experts and give yourself the very best chance. Ivf is such a game if chance you need to maximise the odds from all angles. You sound really positive, which will help you. It's a very big adventure with life changing outcomes. It's also like pandora a box, now it's open it's open.

I know you will gets lots of support from everyone, just ask away. The questions only increase once you get your bundle of joy. My vote says go for it!!!

Good luck

Elizabeth
X

FlossieJones · 19 Feb 2013

"It doesnt matter to me that i dont share genes with any of my children, im too busy loving them and too exhausted to care. My advice would be, listen to the experts and give yourself the very best chance. Ivf is such a game if chance you need to maximise the odds from all angles. You sound really positive, which will help you. It's a very big adventure with life changing outcomes. It's also like pandora a box, now it's open it's open."

That really hit me, Elizabeth. Wonderful sentiment. Thank you very much.

Flossie

Lil Elvis · 01 Jul 2008

Hi Flossie,

We have a lot of similarities! I was never a maternal person - I thought I had a lifetime to make that decision - and only met my DH when I was in my mid-30s. Both of us had come out of long-term relationships which had gone south so we spent a few years just enjoying each others company before we made the commitment of buying a house and marriage. I probably only started thinking of children when I saw him with his teenage godchildren in South Africa - the bond and love between them was amazing. So fast forward and I had a miscarriage at 38 - devastating but we rationalised it as one of those very sad things. Carried on trying, bought an ovulation monitor, was reassured by my GP ... and didn't do anything until I had turned 40. When we started fertility treatment we were encouraged by the fact that all my tests showed that my fertility looked better than my chronological age would suggest. So we got stuck into IVF - only to find that though I have lots of eggs my body really doeasn't like the drugs and we only got 1 egg and a pregnancy which lasted a whole 24 hours. So we tried again and we got one egg which was too immature to even fertilise until the next day. Whilst my husband was still very positive I knew that it was really not going to work and that my chances were very slim indeed. We both accepted that we had tried as hard as we could and that if we really wanted a family then an egg donor was really the only chance we had - our chances of success were <5% with my eggs. I can honestly say that I have not one moments regret - Hannah is the most wonderful thing to happen to us and is the centre of our world. That a stranger had an empathy with our situation and was prepared to go through so much to help us still astounds me every day! What would I do if I were you (and you have the money!) then try a cycle of IVF with your eggs - try to go for ArrayCGH testing (it worked for Noggin) to know that the embryos are genetically normal. Hopefully this will work, but if not then donor eggs stop the clock as far as fertility is concerned - your chances of success will be based on the age of the donor. Perhaps look at having a detailled investigation of your uterus (hysteroscopy?) and a dummy run with the drugs to thicken your womb lining to ensure that everything is looking viable for implantation.

Like the others on here I can't thank Care enough for what they did for us, and for treating us as human beings rather than 'patients' with a medical condition. Hannah's conception may not have been what I envisaged, but it was one of the most memorable days of my life - an entire theatre of staff singing along to Elvis on my i-Pod! And 'Ellis' is her favourite music!

Caroline xxx

vip · 16 May 2007

HI Flossie,

I have answered you on another thread re Care Manchester.

In answer to your question....yes, I would definitely try with my own eggs with a 5% chance. You may be one of the lucky ladies get a positive Smile

The consultants learn a lot from your first round and how your body responds to the drugs and are able to tweak your protocol on the next attempt if you decide to try again. I would make it clear that you are only thinking of having one attempt with your eggs and ask if they can throw in additional support drugs perhaps to help an achieve pg. On my 1st ivf I m/c and when doing my FET Mr Patel agreed to add some immune drugs ie steroids, baby asprin, increased hrt, viagra as well as claxene and gestone into the mix (I have immune problems as well as blood flow/lining issues) I would want to try anything and everything that may increase your chances.

I was successful with my own eggs (FET from a fresh cycle at 36) and after having my son had 5 attempts for a sibling - all negative (between 39-40). Our last 2 attempts only resulted in 1 embie and our consultant suggested donor eggs to improve my chances, his opinion was that my eggs had deteriorated and even with a drug that may improve the quality we were given a 9% chance of pg as we had all the immune drugs inc intralipids. We decided to give it one final attempt with donor eggs (my friend donated) and fresh cycle resulted in MMC and FET has resulted in this pg. I know we tried absolutely everything and like you my worst fear was having regrets in years to come. What ifs can be so painful.

Wishing you all the best with your cycle and I really hope you're a mummy soon Smile

xx

FlossieJones · 19 Feb 2013

Caroline: I love me some 'Ellis' too! You've given me some new stuff to look into with the CGH. Like I said, I've never heard of half the stuff I'm now coming up against so well informed is well armed and all that. I thank you.

vip: Thank you again. You offer wise words and insight and again, more for me to check into. One question I have if you don't mind. We've discussed the donor egg idea until I'm blue in the face and he has either fallen asleep or tuned out completely, bless him. My preference would be to have the donor be someone I know. I understand the pros and cons of each idea thoroughly. I know why clinicians would prefer to have it anonymous. My preference would still be to know. How on earth did you approach your friend about being your donor? Did you have the clinic trying to talk you all out of it? What is your opinion on that?

LADIES: The way my Husband is viewing the donor egg idea is not the way I'm seeing it but I absolutely understand where he is coming from. He never wanted babies. He met me and that changed because he wants the chance to be a Dad to a child that is half me and half him (the good bits AND his big ol' nose!). He's saying that it would be strange for him to have a child not knowing anything about the mother. He doesn't love that mother, he loves me.

The way I'm seeing it is I will be carrying that baby that he and I will be planning for and looking forward to and it will be growing inside me and I will give birth to it. Of course I have no idea as to the percentages but a certain amount of my cells and or dna has to get into that baby through the placenta so it becomes more a part of me than he is thinking. I don't think it matters that you may have had some help in the creating of that baby when someone puts a child in your arms, you just instantly fall in love. I've asked him what the difference is for someone who has to have a heart, liver or kidney transplant. Yours isn't working properly so you need someone else's. Do you then look at that person as different? Not the same person you fell in love with? Of course you don't! My ovaries may not be working to the point where I can't have a baby. Surely the next best thing would be to accept that help from someone else.

He's thinking about it as the 5% we've been given looms large on the horizon. Did any of you have trouble convincing your other halves regarding donor eggs? What do you think about anonymous donation as opposed to knowing your donor?

Thanks,

Flossie xo

kitty1 · 12 Jun 2008

Hi Flossie,

I'm not yet 40 and don't have endo but I do have a very low ovarian reserve and after having one successful IVF with my OE in 2008, resulting in my son Lewis, I was told by George that if i were to try IVF again I would need to use DE. When I had IVF back in 2008 I had 8 follicles which resulted in 5 eggs, only 2 mature enough for Icsi which were both put back as embryos, one is now fast alsleep in bed Smile

however when I had a pre treatment scan in Dec 2010 I only had 2 follicles and an Amh of 0.07 Sad

We decided to put our names down on the De waiting list back then but only recently decided to have the counselling that you must have before embarking on De treatment. We have recently been matched to an anonymous donor and are due to start a DE cycle in the next month. It has taken me a while to accept that any possible further child I may have wont be genetically related to myself. I have half siblings as does my dh and I am very close to my siblings and have never looked upon them as anything other than just my siblings. I look so alike one of my sisters it is remarkable, yet our other sister who is 100% genetically related to the sister who looks like me, looks nothing like us! I would say I'm closer to one of my half sisters than I am to my 100% genetically related brother.
At first my dh was against the idea of using De but he has really come round to the idea now and it has been more me with the concerns!
If you can afford it then you could try an OE cycle then at least you'll know you gave it a shot then your dh may be more open to the idea of a de cycle.

Kitty xxxx

FlossieJones · 19 Feb 2013

Hiya Kitty,

I too have very low AMH. I recently had an internal ultrasound and they found 3 follicles so chances aren't great, we know that but I've been very lucky in that I have a small inheritance from when my Grandma and best friend died and I can't imagine her being happier than if I spent the money she left me on trying to have her great grandbaby. What a way to honor her. You're right in that family is family whether they have half your genes or a full set. One of my mates is adopted. She found out when she was 18. She loves her family so much that she's never even entertained the idea of finding her birth parents. She's too happy with hers!

Flossie xo

Rachel R · 30 Mar 2006

I can't help with the DE choices from experience, however, so many people on here have said how people have commented 'doesn't (s)he look like you?' to DE babies...
I'd like to suggest you look back on the Lovely Ladies thread to the picks Maryrose posted about her uncle and Olly - absolutely no genetic link, but identical! (I'd only think about suggesting it as find anything in the middle of that thread would take years of searching!)

It's pretty clear from all the experiences of the DE ladies that while you are carrying a baby, some of you gets into that baby and changes them. As you said, if someone donated you a kidney, it wouldn't change you. If you make a cake, you buy *all* the ingredients, but the cake was still made by you, and couldn't have been made by anyone else. It's yours. (well, until the rest of your family eat it while you aren't looking Laughing

)

Good luck whatever you decide. You sound exactly like your signature - hopeful, grounded and strong, and that's the best start you could have as you face this ivf journey.

Love
Rachxxx

Merlin71 · 06 Dec 2012

Hi. Just a quick post to say I'm 43 ovarian reserve pretty rubbish and partner sperm a bit slow and in short supply! I can't get NHs finding so am going to go private for 1 round ivf. 5% chance using my own eggs or over 40% chance using donor eggs. Will also use ICSI. There was no decision for me. If money was no object I would do own egg first but as can only afford one cycle got to go donor! Reading posts on here has really helped me as so many have used de to get bfp
Good luck with whatever you decide x

FlossieJones · 19 Feb 2013

Thanks Rachel. I appreciate those words. Most times I feel strong and some times I feel like a little girl going through her first day in the new school. Terrified! It helps to know that there are very strong, intelligent and successful women out there somewhere who have been and are going through it so I appreciate everyone who has replied.

Merlin: The posts have been helping me also. Just as women who provide the donor eggs are wonderful, so are the ones who bother to read and share as it goes a long way to helping others. I wish you all the best. I'm waiting for our consultation appointment so will be starting soon (I hope). Let me know how you go please.

Flossie xo

vip · 16 May 2007

Flossie, I didn't approach my friend - she offered Smile

After our last ivf attempt and getting only 1 embie again on full dose drugs I was about to give up on trying again as it seemed we were throwing away money and the thought of ending up with nothing to transfer after being on all the immune drugs scared me. My sister who is 4 years younger than me offered to donate after me saying we could possibly go down the donor route path but I wasn't keen at all as there was approx 12 months waiting list at the time. I thought long and hard about it then, to accept her kind offer or just to leave it. My d/p wasn't keen at all using my sister but he agreed to think about it. In the meantime, she became pg and had a m/c...this made up my mind that it wasn't the right way to go. Anyhow, my donor friend was asking me about when we were going to try again and when I told her we probably wouldn't again due to my reasons and out of the blue she asked if she could help us! She discussed it with her husband and approached us about donating after doing a load of research about it all! To this day I still can't believe she has been so generous and do this for us. We live quite a way from the clinic and she and her husband have been fantastic in going out of their way for us. Felt really bad when her husband too had to have hep b, c, hiv tests done especially as he is scared stiff of needles!!!! He supported her decision 100%, went with her to see councilor even though he has a very busy work schedule and is away from home quite often.

My consultant was v supportive of using my friend as a donor, eapecially with her being 10 years younger Smile

The councilor didn't try to put any of us off either, we all saw Ruth - she is really lovely and was positive about it all.

Oh, btw - with regard to looks etc, it's not important in my book. My d/s was like me when he was born but is the spit of his father now, I would say his eyes, long eye lashes are the only resemblance to me ....will be interesting to see what this new little man will look like - I'll let you know in a few weeks!

Decisions, decisions eh....one thing I will say is that once we'd made the decision to use d/e it was much easier thereafter Smile

xx

vip · 16 May 2007

Kitty and Merlin - good luck to you too Smile

x

FlossieJones · 19 Feb 2013

vip: She sounds like a wonderful lady. I've been told by a few people that clinics will always try to talk all parties involved out of knowing your donor and going with anonymous instead. I understand why but would still prefer to chose someone I know. That conversation...how would you even start?

Flossie xo

kitty1 · 12 Jun 2008

Flossie my neice offered to donate her eggs to me but I declined her kind offer. She's only young in her early twentys and not even married or a mum herself yet! I couldnt let her do it. My sis offered too but she's mid 40's and didnt fancy my sis being donor anyway, although she's too old to donate.
I'm more comfortable with an anonymous donor myself but if you do decide to go the de route and would prefer a known donor, I wish you the best of luck and whatever you decide I hope it works for you Smile

Thanks VIP Smile

Kitty xxxx

FlossieJones · 19 Feb 2013

Hiya Kitty,

I can't believe the generosity of some people. Of course it isn't something I ever thought about during my life as I've always had the issues I have and always pretty much knew I was buggered anyway BUT a woman offering to help either a woman she knows or even a complete stranger in this way baffles me and humbles me. I think we're pretty much resigned to the fact that if we go down the donor route we will do anonymous as neither of us can imagine how on earth we would ask some of the women we know. Both of us end up in fits of laughter as we're playing out the conversation we would have with some of our mates. "Giz yer eggs luv" was my personal favourite.

Flossie xo

Briony · 06 Apr 2001

A friend of mine has been an altruistic donor, she works with babies and has a child of her own, knows the pain of infertility because of friends and her work and decided it was something she'd like to do to help another woman. So generous! She also had the massive advantage of being in her 20s and has said its something she'll consider again when her family is complete, how lovely is that?

Love Briony

FlossieJones · 19 Feb 2013

That's lovely Briony. After being through all this, if it were possible for me, I would do it in a heartbeat. I don't think women realise the gift they're giving. I'm an organ donor and my family all have explicit instructions that should anything ever happen to me they are to let them take what they need. I won't be needing it, what if someone else desperately does?

Flossie xo

vip · 16 May 2007

Briony - your friend sounds lovely Smile

Flossie - you made me laugh with "Giz yer eggs luv" !! I know what you mean though about it being difficult to approach people re donating. It's not something I would have though of really either. My freind who donated knew what we were going through as she used to do my gestone injuctions for me when d/p was working. Maybe having a bit on insight into our situation and repeated failures made her think about helping us. Her little girl is a very good friend of d/s and she knew how desperate we were for a sibling for him.

You're lucky now as there isn't a waiting list in Manchester so at least you won't have to wait long at all if you decide to use an anonymous donor.

Good luck in your apt with Mr Patel - you're in the best hands there Smile

FlossieJones · 19 Feb 2013

Good to know vip, thank you!

I'm sure they've seen more trying cases than me but I keep thinking they're going to write me a letter and say "No way Sunshine, you're a mess!".

Flossie xo