So I thought I would update you all on my IVF journey and I guess reach out to anybody who is/has going through the same thing. Not able to sleep, so just writing this post. I had my 1st IVF consultation yesterday with a clinic yesterday. I went in feeling positive but deep down I guess I never really knew what was to come. She went through all our notes and results of some of the blood test results which we had done over the past few weeks and she went through each bit step by step.
She told us that my situation is too complex and that due to its severity, IVF is most likely a no go. I have severe
endometriosis (stage 4), a 10 week size Uterus (adenomyosis) and a scan which I had done earlier this year showed that my tubes are abnormal and one is inflamed. The scan also outlines that my ovary (right) has been pulled out of section by the condition and tucked behind the uterus which means to get eggs via the needle for IVF would not be possible.
said my AMH results (5.4) are categorised in the very low section and have lowered severely due to my condition damaging the ovaries (adhesions growing over the ovaries) and as I am also older (37), the number and quality of eggs have deteriorated.
I feel totally heartbroken, and just can't stop crying at everything they told me. I feel depressed and just not sure what to do, who to speak to and where I really go from here. I feel I have been punished for any bad I may have done in my life. I know I shouldn't blame anybody but sometimes I blame God for doing this to me. The DR said this isn't my fault and that I have done nothing for this to happen. I never ever imagined that I would be told that IVF isnt most likely an option for me. I always thought and maybe I didnt know enough, that every one of us could have IVF regardless of who severe our situations were. They said they would rather be honest with me and give me all the worst case scenarios rather than fibbing to me and telling me that everything would be great and my success rates would be high. I asked the dr if they had treated cases like mine - she said yes they had but it didnt work. She also told us that we just wouldnt get pregnant naturally as my areas are not normal and if i were to get pregnant it would most likely end in a miscarriage/ectopic.
I have been presented with the following options and told to think about them in the next month or so.
Option 1 - To have an ovarian reserve scan when I have my period - This will indicate my egg reserve and if they can access my ovaries. If they can they will then go to next step which is get my eggs, - as many as they can to form the embryo and freeze what they can. I would then need to go and have both my tubes cut as the toxic waste from them could damage the transferred embryo. Only then would they transfer the embryo/s. She said even if I pass all these hurdles and we get to this point, because of the severity of my condition, my success rates are very low - only 10-15%. This was most devastating to hear as the number is so low.
Option 2 - If my ovary is not accessible then to use a donor egg and a surrogate. using my husbands sperm. The surrogate would be the birth mother and we would have to adopt the baby back. This is an option which we don't have enough knowledge on and something I never thought we would have to do.
Option 3 - If they can get to my ovary and get the eggs, they would make the embryo, freeze what they could, I then go away and have my hysterectomy and colon surgery and a surrogate would carry the child for us. I am asian so I don't know the ethical background to this however.
Is there anybody who has gone through anything similar to me and can shed some light on these options or even someone who has/is going down the surrogate option using eg donor? I dont know if I can use another egg donor as it may feel strange knowing its not my child genetically.
Using a surrogate would mean I would go away and have a hysterectomy as thats the only option left which will help eliminate the daily pain that I get from it.
Why is this awful thing happening to me? I have had to work hard at everything as nothing is ever easy for me - my career, to find my husband after so many years of searching, and now this - the dreadful prospect that we may never be parents.
Sorry for my long post. Thank you for reading and good luck to all of you regardless of what stage you are at on this journey. I must try and pick myself up but right now I feel numb and like there has been a close death.
x
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cryst4l
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I haven't gone through the exact same scenario as you, I am going through ivf, my infertility is "unexplained".
Firstly I'm so sorry that you've gotten such poor news, I'm the same age as you so can empathise how devastated you must feel.
I'm no expert but it would seem from the medical advice outlined in your post you really only have one option, surrogacy. Personally I don't think I would go through the stress of the full ivf process with a 10% chance of success and further risk of miscarriage due to your physical limitations. The drugs are tough on your body not to mention the psychological effects.
In addition it sounds like it would have a significant impact on your existing health conditions, you need to be firing on all cylinders to have a newborn!
Did the doctor refer you to any surrogacy agencies or for some specialist counselling ?
If it was me I would:
1. Harvest my eggs (only if the doctor recommended this in light of existing health issues)
Thanks for your reply and advice. I hope ivf is going ok for you.
The Dr didnt give us any info on surrogacy apart from saying that they would use an agency and no talk on counselling as she said to spend the nxt few weeks thinking of our options. I just dont feel hopeful on anything at the moment. I dnt think yesterday's news could have been any worse. I dont think I have come across anybody on this forum saying they have been told its the end of the road for ivf or that their eggs cant be reached. I just feel so abnormal.
I know it must be impossible to see any positives right now but you do still have options, it doesn't have to be the end of the road. You do have surrogacy and possibly adoption available to you?
I do think that you should speak to a specialist councillor to mull over your options, 5 weeks a is a long time to be stewing over things yourself and becoming more stressed/despondent
In terms of no one else posting in your situation, most people who post here are going through ivf which is probably why you're not seeing people like you or they're not brace enough to post
Stay strong, treat yourself and ask your doctor to refer you to a specialist councillor who can work with you. There must also be support groups for people in your situation, your doctors office should be able to help
Did you not discuss surgery for the endo, to remove the tube (which you don't need for ivf) and free the ovary? My OBY-GYN did a laparoscopy and hysteroscopy (had two - first one when about your age and second last October) to clear my endo and free my ovaries. Second one I had other things going on, including an enlarged uterus. He's also an IVF specialist so when I asked about that, he said it would not be an issue. I had my first cycle of IVF in May (with a different consultant- same opinions on my situation though!) which wasn't successful but we got my eggs out ok!! The endo may be causing me an issue with inflammation and implantation but my consultant also says likely not. I'd really get a second opinion before making any decisions!! DM me if you want to chat more - don't give up just yet!! xx
Sorry - early and I have brain fog! Should have said surgery BEFORE they try to get the eggs. And take a look at a book called 'endometriosis - a key to healing and fertility through nutrition' by Dian Shepperson Mills. You can get it on Amazon for about £15. xx
Hello cryst4l , I'm really sorry to hear how you are feeling after what sounds like a very difficult consultation at your clinic.
Whilst I can't fully relate to your situation, there are parts of it I can do I hope it helps even a little bit. I too have endometriosis - mine is in my left ovary and Pouch of Douglas. I didn't know it had affected my left tube and so when I fell pregnant in February (after trying for a year and a half), I found out at 9 weeks that it was ectopic and my tube and the pregnancy had to be removed during emergency surgery. The surgeon couldn't confirm whether my other tube is healthy, just that it looked ok from the outside but no guarantees that inside is not blocked. I would agree that getting your tubes removed or 'clipped' prior to any treatment is a good thing to do based on what you've said.
With regards to your endometriosis, there is an Endometriosis UK forum on here if you search for it, you might get some good information and advice from the people on there too. Have you been referred to a BSGE Accredited endometriosis centre? These centres have endometriosis specialists who may be able to offer a second opinion.
I can relate to your AMH levels too, mine are low at 4.7! It is pretty devastating to hear but it does only provide you with an idea of your egg quantity rather than quality and also is used to judge the level of drugs you are likely to require. You do still have eggs and there are women who have AMH levels of less than 1 who go on to have successful treatment - or so I've been told! There is also, like you say, the option of donor eggs which I know a few ladies on here have experience of.
It sounds to me like you have so much information to process and some big decisions to make, I really hope you have support at home and can speak to someone about this. As I say, I think it would be a good idea to get a second opinion from an endometriosis specialist with regards to your treatment options. You can search for BSGE Accredited centres online.
Whatever you decide to do, I hope that it works out for you and you get your well deserved happy ending. Xx
Thank you for your reply. I have joined the endo forum on here. I have a complex situation where the fertility DR said that as my ovaries may not be free (surgeon was unable to do this due it leading to further bleeding and a complex procedure) they may not be able to retrieve the eggs via the needle which means IVF can not happen. I will have my ovarian reserve scan in a months time and I am praying that she tells me that they can access the ovary but right not I am preparing for the worst case. In regards to going to endo specialists, I went to best surgeon in London for both the advice and operation with them at the specialist centre. Thank you for your support on here xx
Wow what a blow, I do think talking this through with a councillor may help you with your decisions. I just wanted to say I'm sorry to hear your news and I hope that whatever you decide in your journey you have a happy ending xx
Hello. Sorry to hear you've been given such devastating news from your dr. I just want to tell u my story so far.
I'm single. Last year I was diagnosed with severe endo following a laparoscopy. Until then I'd had very little symptoms and the surgery was to investigate a mass I had that was blocking my left ureter and caused my left kidney to fail.
During the laparoscopy they found a large endometrioma on my left ovary and invading my left tube. These were subsequently removed. I was 36 at the time and fast approaching 37.
I then decided if I want to have any children I needed to get on. After a follow up with an endo specialist I went for ivf.
My Amh was 4.2 and I also had a low AFC. I had to wait to find out the plan for my non functioning kidney which took a few months but I was then able to try ivf. I was advised my chances were low but I knew I had to try. During the lap they had been able to assess my right ovary and tube and thankfully they were fine.
I had my first cycle of ivf in January and got 7 eggs following a short protocol. 6 were mature and fertilised. From that I got 3 blastocysts. 1 hatching blastocyst was transferred and 2 were frozen.
I got my bfp but sadly at my first scan there was no heartbeat. I miscarried at 9 weeks. 💔
After my miscarriage I had an acute flare up of my endo and I'm 10 weeks post op from endo removal. I also had my left kidney removed.
I'm now 38 and I had a follow up at my ivf clinic this week and I'm hoping for FET in November.
I've done lots of research and it all says that thorough endo removal with an endo (BSGE) specialist is needed and that in some cases this can improve fertility.
I don't know what lies ahead for me but I just wanted to let you know that even with low Amh and endometriosis that's done a lot of damage it is possible to have ivf. I have endo that they couldn't remove, severe adhesions and I also have adenomyosis.
Sorry for the long reply.
I hope you find the path that's right for your journey. I will keep trying until I've exhausted all options.
hi there- I am sorry to hear of your journey at the start. Did they tell you why you miscarried the first time? and what did they say regarding the adenomyosis? The fertility dr said that will be the main cause of an unsuccessful pregnancy if they do manage to implant an embryo in me. Its difficult as I have never of a situation where someone is told that the dr can't get to the ovary for eggs. most ovaries are freed up in the operation but mine couldn't be freed. I am praying that the scan will show that the ovary that may be ok is accessible. I was only given a 10-15% chance of success if the embryo (my own or donor) is implanted. Thank you for your well wishes. good luck on your journey too, keep me posted on how you get on. xx
It is so difficult to get these blows, but all is not lost. Surgery, surrogacy, adoption....I have a friend who went through 7 rounds of IVF without success and then adopted a little girl......she is lovely. It is so hard but then best to be told the truth, to avoid wasted time or investing in things that aren't likely to help ..... you WILL get there in the end. Plus there are lots of support groups out there to help you get your head around these different options, and you could talk to mums who have done it, help you to learn more about the options. Hopefully then it will seem less frightening. Good luck and stay strong. X
Thanks Tango789 - I know it can work out some way or another and it will take me some time to get my head around it all and digest what we have been told and accept things too. Only once I accept it, I can try and make some decisions with our next steps. Adoption is not easy in this country for someone who is of an Asian background and it takes up to 2-5 years going through the process. So right now, it feels all doors are closing in, and that our dream has been dashed before it has even begun. thank you for your well wishes xx
Hi, cryst41, I just wanted to say that reading the replies to your post, it sounds like you have people here offering their advice and support. It must have been so hard to hear the news from your clinic and I wanted to wish you the best of luck in whichever path you chose to take xxx
Thank you, I know there are some lovely people on this network and I appreciate everyone's advice. This is a very lonely process and you can't always open up to people easily. It has been the most devastating news to hear. I can't digest it all right now, but I hope that each day it gets easier for us and that when I do eventually accept what is happening, I can try and make the decisions that are required. Thank you for you well wishes xx
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