# Complicated and complex - the words I can't shake off. My subfertility hell



## hoping-for-a-miracle (Aug 19, 2014)

It's been 3 months since I was hit with the unexpected and most heartbreaking news of my subfertility. So here's my history....

Been with my husband for 15 years and over the last three years we wanted to try for a baby. Having had several major open abdominal surgeries for a genetic cancer genetic condition, I was aware I may fall into some trouble due to internal scar adhesions. 2 years ago we started the wheels in motion and to add insult to injury I was diagnosed with endometriosis. My gyne was confident the operation went well but echoed the necessity of ivf as I needed help due to my scarring. We never tried to conceive a baby naturally for the fear of passing on my genetic condition. So we persued the correct channels and sort out getting on the list for PGD. We both had all the relevant tests done and to my surprise everything was working and there was no sign of my endo on the return. We waited for the funding and 2 years later in August 2014 I started my first cycle of IVF. It was apparent I had a low number of follicles but it was still possible to continue with the treatment. So we did and I produced 6 follicles and from the egg collection only 4 eggs were present. Of that 1 was already dead, 2 fell apart & the sole surviving egg fertilised under icsi. Our precious embryo cleaved to day 3 and stopped dividing after this time. I was terribly worried about why I responded badly and was totally heartbroken. In the back of my mind I thought I still have 2 more attempts and the first cycle is more like a trial run. Our appt came around to see the consultant and we were both eager to know the next step and how we could adjust my treatment. Well I couldn't have prepared myself for the next words from the consultant, I'm truly sorry but we had you on the highest possible dosage and you responded very poorly. I sat there in complete shock. For the last two years everyone told me everything was working ok and then in a blink of an eye my whole world fell to pieces. The hospital weren't prepared to start another cycle, my AMH levels were 6 and should have been in the region of 18. So my ovaries werent working as they should be. I cried my eyes out, I just couldn't take it in. The consultant said we had the option of egg donors or adoption but I just wanted our own baby. Currently we have been trying to conceive but I feel I am in denial. Everyone I know has a baby or first & second child and others are expecting. I feel like I'm in an exclusive club all on my own. I know what I have written appears selfish because I am aware this affects my husband too. But I can't help but feel that he's ok and he could still have a baby if he chose to walk away from my situation. I am 90% certain he never would but he was so quick to sign up to the egg donation, it made me realise how much he wanted a baby. I can't hide my thoughts on egg donation, thoughts of jealousy, failure, the loss of having my own bit of myself within the baby, the loss of the baby that should be both of ours, carrying a child that isn't mine, bonding issues, the lists go on. I just can't come to terms with this awful news and every month my period arrives is another opportunity to drag myself down further. I have started counselling but I feel it's me talking about it all and it doesn't make anything feel better. I feel so lost and so useless as a woman and as a wife. I guess there's got to be someone who can't have a baby - and that person is me. Something I never thought possible. I know I'm not the first or last woman in this situation but when no one you know suffers this pain, you feel you are the only lost broken woman.


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## Asja (Oct 8, 2013)

Back up...what stimulation drug did you use, at what dose? It is possible you could try a different drug, at a different dose.  Also get a second opinion. Just because one doctor told you his opinion, another doctor may have another conclusion, like altering your meds.  You could also look into treatment in Europe. It is significantly cheaper in the Czech Republic.


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## rubster (Jul 26, 2011)

Hello HFAM,

I'm so sorry this has all happened to you, but I have to echo what Asja has said, it is poss to dry diff doses. One clinic put me on 600iu's and I didn't respond at all they didn't even bother converting to IUI, another put me on 250 iu's of a different drug (menopur and fostimon) and I had about 12 follicles and 7 eggs. OK it didn't work, but the point is I went from terrible response to the best, the first was in Feb 2013 the second September 2013..... You have to be careful some clinics seem to want to dictate to DE to keep the non-responders out of the IVF category to protect their success rates. It's terrible and I know most of the time I felt terribly anxious that I didn't know what decision to make... My last clinic was the Lister and I thought they were FANTASTIC. Jaya Parikh in particular is amazing and just lovely. 

Best of luck, I hope you feel better soon. I understand your feelings, just try not to be so hard on yourself, this is all very hard and it sounds like you have had to deal with lots of other health issues too....

Take care

R xxx


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## M0ncris (Aug 25, 2013)

Dear HFAM,

I am sorry you have been through such difficulty.  

I absolutely echo what the other ladies have said.  Please go and get a second opinion.  Are you able to go private?  Amh of 6 is tricky but there is still hope (I have around that number).  6 follicles is decent.  I have had as low as 3. It is all about the right stimulation as if they stimulate you with the wrong drug or too much of it the eggs will be damaged.  I was speaking to an embryologist the other day who said it made all the difference.  Great as the nhs is I don't think it is for you and if you can afford it I would go to a private clinic (or a few) and see what they say.  Argc is brilliant.  I've heard good things about lister and fertility and gynae academy (dr gorgy).

I was on the highest dose of menopur on my last nhs round and it was a disaster (3 eggs, 1 immature, 1 didn't fertilise, 1 fertilised and I had a chemical pregnancy).  The next time I made it to blast and still had an embryo to freeze all from 6 eggs.  A much better response.

I don't know who your clinic were but I am quite cross with them on your behalf!

Good luck,
Mon
Xx


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## bombsh3ll (Apr 19, 2012)

Hi hoping-for-a-miracle,

I'm sorry you're in such a dark place right now. I just wanted to share my thoughts and experience with you as although you may feel now that using DE is a kind of failure, it really can be the path to the miracle you are looking for & is in no way a second best option, especially as you mention having a genetic condition that you wouldn't wish to pass on.

I too have tubal infertility (appendix abscess), and my family have a BRCA2 mutation. I had risk reducing mastectomies but still have my ovaries. Although I had high AMH and produced many eggs which were good quality, I swiftly made the leap to DE after two cycles having suffered from severe OHSS and had to abandon the second OE cycle due to overstimulation.

It was the best decision I ever made. Not only is DE treatment far, far easier to undergo than OE, but my daughter will not have the gene for breast and ovarian cancer. Other than that she is the image of me and 100% my child.

I know some ladies feel strongly about OE, but especially if you are going private now I would really save yourself the expense and heartache and give DE some serious consideration. If you were going to have PGD for your condition, potentially half or more of your embies could be unusable anyway for this reason, and unfortunately that looks like half of a low number to start with.

Please don't be upset or offended by this if DE really isn't for you, I just wanted to let you know there is an easier and better way out there than putting yourself through cycle after cycle of OE with miserable chances of success.

I can totally relate to feeling "broken" at being unable conceive naturally, I felt like this too, but using DE rather than OE didn't make my body any more broken, it just mended my heart quicker.

Best wishes,

B xxx


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## hoping-for-a-miracle (Aug 19, 2014)

Hi everyone thank you for your messages. It's nice to hear from others in a similar situation to myself. I was seen at guys & St Thomas' and was on 300 units of gonal f and 0.25 cetrotide. I started gonal f from day 1 to day 10 & the cetrotide was started on day 6 to day 11. I took 50 units of buserlin as my trigger 12 hours before my EC. I was told my medication was ramped up as high as possible for a 30 year old and the "team" thought it was best not to put my body through another cycle - I was in so much shock I didn't have the capacity to fight back - not like me at all. So the question is would I be wasting my time going private, setting myself up for yet another fall or should I just face the cold light of day and stop chasing something that is near on impossible? Who did you see at the Lister clinic? Can you recommend anyone? I've been thinking about a second opinion for a little while now, even if it's just to sit and talk about my options. I don't want to throw in the towel yet and open to your ideas.


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## jules-m (Dec 12, 2011)

Hoping for a miracle,

an AMH of 6 is low but not THAT low.  Mine was 1.7 to put it in perspective.  If you are 30, then you are also young.

I'm also a lister lady - I saw Dr Farris.  They were fantastic - very realistic about my chances not just due to low AMH but also due to High FSH.

The NHS don't like to waste their cycles on people who have limited chances of succeeding & quite a lot of private clinics are the same.  Shop around - you obviously need to consider your genetic testing needs, I'm sure the lister have experience of this, but do some research.

don't let one consultant end your dream when you are young & your test results not that bad.  I had 6 follicles & got 4 eggs, 2 made it to day 5 & I have b/g twins.  So quality counts not number.  A change in medication could offset damage to the eggs which could be a possible cause of problems in your first cycle.

lots of luck

Jules


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## hoping-for-a-miracle (Aug 19, 2014)

Jules did you get turned down by NHS for ivf due to low AMH levels or were you like me and were only given one cycle? I am encouraged by your amazing results! What medication were you on?


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## Asja (Oct 8, 2013)

I wouldn't get hung up on your amh level.  Mine was 1.5 and yet I still have produced a dozen eggs twice this year.  I have taken Puregon 300, and Menopur 300, and responded better to Menopur.  You might consider a supplement such as DHEA to improve egg quality.


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## hoping-for-a-miracle (Aug 19, 2014)

Hi Asja, I have been taking 50mg of DHEA for the past month and also having acupuncture. Not sure of the effects of either but something increased my last cycle from 24-26 days to 28 days. I'm hoping this wasn't a fluke and maybe something positive coming my way?! Has anyone else been on DHEA?


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## jules-m (Dec 12, 2011)

Hoping for a miracle
My 2 combined problems - low amh and high fsh meant the nhs and many private clinics wouldn't touch me. 

The lister were realistic - 3% chance of success, but said if I could respond then it would be down to quality not quantity of eggs. 

I did acupuncture and took wheatgrass to teduce fsh and was in 375 of menopour. 

My response was slow - it was only on my final scan that more than 3 follies appeared. And luckily between that scan and ec one of the tinies produced an egg. 

I think you should def research other clinics if you can afford it. Your age and amh give you a good opportunity I would say. If not then you may find yourself more ready to consider donor eggs. 

Lots of luck

Jules


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## Haydan (Oct 12, 2013)

Hi there,

didnt want to read and run - firstly just want to say that the advice in this thread is sooo good!

and just wanted to add a bit of perspective to the whole 'bad response' issue...

i have a good fsh & amh level
i have (so far) no medical reason for infertility
i am still in my 20's (just  )

and yet throughout my IUIs and first IVF i responded really badly - was convinced something had gone wrong in my tests so has my FSH & AMH done again and still good.

they completely changed my IVF protocol for the 2nd cycle - and my response was so so much better.


like you said the first cycle is often trial and error so they often dont work - i really am shocked the dr told you there was nothing else they could do.

i also researched different supplements/vitamins etc to see what else i myself could do.

i know my starting point is very different to yours but just wanted to point out that bad response can be purely down to wrong combination/dosage of drugs/treatment

please dont give up after 1 go.


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