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Discussion Starter · #1 ·
Hi

I am not really sure if here is where I should be posting. I dont think I really fall into the same category as many people. I have a condition called hypogonadotropic hypogonadism. That means that there is no message from my brain to my reproductive system to do anything. Never had periods naturally, but did with the pill for years. Also my sister has the same condition but did simple ovulation induction and now has 3 kids (from only 4 cycles I think!).

Thats where I started about 3 years ago, with ovulation induction and it has worked its way onto IVF and now FETs with the embies that I was lucky enough to be able to save. I still have 5 left.

But the problem from the first cycle on has always been my lining. From the original lutrolef I was getting up to about 3.5mm, then with Gonal F I have gotten up to the 5-7mm area, but always the same thing happens. Doc says, ah yes your lining after 1 week of injections is 5mm, once these follicles start growing more, then the lining will thicken. Lo and behold every time, the follicles get to their target 18-20mm, and in plenty numbers, but then we look at the lining it has not changed a bit.

I dont understand it, clearly my doc doesnt understand it. Is there anyone out there who can shed some light on this?

Maybe there are suggestions for tests that I should have done. I have suggested to my doc that maybe I should see an endocrinologist, to try to find someone who actually understands what my hormones are doing, but she poo-pooed the idea... Doesnt mean I will not, but I suppose I just need some focus, to figure what is the best direction to go next.

I am living in Holland and having gone through 2 different hospitals, with equally useless results, I am considering going to Belgium or London to find proper specialists who dont just do the standard thing and not really care when it doesnt work.

Would really appreciate any little bit of info or help that any of you could give.
Thanks
aissha
 

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well, I am not sure why they haven't been measuring your blood levels of E2 (estrodial) and making sure they are in the target range for developing a good lining thickness whilst they've been monitoring your OIs/IVFs.

you might want to read the section in my FAQ under L for lining issues, but basically, you'd want to find out whether your lining is capable of growing to sufficient thickness (e.g, 9mm) to support a pregnancy so I would GUESS the first thing to do would be to do a monitored test cycle where you take E2 and measure the lining thickness with monitoring scans and also your blood levels of E2 to make sure it is getting high enough (if they don't get high enough, then you could look at having shots of E2 and possibly patches/pessaries rather than relying on E2 pills.  Then, if that reveals that even when there is enough E2, lining growth is still poor, you'd do a trial of vaginal viagra pessaries on top of the E2 supplementation, possibly with terbutaline and blood thinners (e.g., clexane), in case the problem is one of blood flow and nutrition to the lining.  You also might want to do a doppler ultrasound to the uterus to see whether the overall blood flow to the uterus is adequate - and again, drugs aimed at dilating the vessels and thinning the blood may help if this shows a problem.    Finally, you would want to rule out a physical reason for the lack of lining growth e.g., scarring, adhesions, so that would entail a hysteroscopy.

Dr Sher, I think, has done some articles about lining issues on his blog at ivfauthority.com so you might want to look there and possibly post a question on his forum - then you can see whether his advice is similar to my guesses?

hope this helps

 

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Aissha
Unfortunately i can not help you with personal experience, but i have a friend who told me that she had a condition where her brain wasnt sending messages to her reproductive system and that actually she had never ovulated or had a proper period since aged 13. She obviously only found this out when after 2+ years of TTC when she went to a specialist.

Anyway the consultant she was under ( one of the best in the country)made her have bloods done and have scans done EVERY SINGLE DAY for 2 weeks from day 1 of her period. Every day she had to fax him through the results and every day he changed her meds according to those results. IN short her treatment was totally tailor made for her. She didnt do IVF with him but IUI with a specially shaped utensil that he inserted directly into her womb. kind of u shaped??? - dont ask me why! And he did IUI two days running.
She has 5 year old twins.
Unfortunately she does not live in the UK and this consultant is the head of the Hadassah fertility hospital in Jerusalem. His name is Professor Neri Lauffer. Google him. Her condition sounds similar to yours...
Good luck
 

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Discussion Starter · #4 ·
Thanks JBox and agate for your replies

JBox, I am starting to think along those lines and am trying to figure out a good clinic in london/uk for this day by day treatment. Very interesting to hear that your friend faxed in her blood results, it is something I had not thought of, but could help as I live in Holland and want to be treated in UK.

Agate, I followed your link and am totally in awe, the amount of information you have put on there, incredible, all the girls on FF owe you a debt of gratitude,  ^hugme^

I have gone along the patches route (estradiol) and they didnt make a huge difference alas. The next cycle my doc is going to supplement the Gonal F with Ascal, which i think is like baby aspirin, a blood thinner, to see if that helps. I guess that we should also add in the estradiol patches just for good measure. TBH I feel I am just trundling along with no proper focus. I should get organised and research a good clinic and get a consultation there....

thanks to you both for the helpful responses  ^hugme^
aissha
 
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