No down regulation before FET (with e... - Fertility Network UK

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No down regulation before FET (with endometriosis)

Skittles11 profile image
12 Replies

Please tell me that this is okay for when I do an FET?

I had prostap on a previous cycle which failed and had it again in September with the intention of having an FET the next month.

That cycle had to be cancelled because of spotting related issues and lining not developing.

I then had a mega long cycle without any period - 64 days!! So the prostap appeared to close everything down for a very long time and the decision has been taken to not have me down regulate again.

My first ever cycle was also an issue with this, my ovaries did not give any eggs as they did not wake up after down regulation.

So I definitely see the merits of having no down regulation after as my body doesn't seem to be able to wake back up afterwards.

But I must admit I am concerned about having endometriosis and having no down regulation. It will be a medicated cycle with estrogen and progesterone.

I have no endometriosis symptoms and am not having a laparoscopy at least for now.

I have had implantation before and development of a pregnancy without any down reg (no live birth).

Please share your encouragement on this if you can xx

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Skittles11
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12 Replies
Fruitandflowers profile image
Fruitandflowers

I had endometriosis for years and although my most recent lap said it had gone, I don't react 'normally' to any of the meds so something's still not quite right. First cycle they put me on long protocol down reg and my body just ignored the meds and I had quite a bad reaction to it anyway, much better rounds without. And on FETs my private clinic didn't seem to even offer it provided my cycles were regular, and one out of two of those worked. Was even about to go for a fully natural FET because why not, hadn't tried that sort yet(!) also my body seems to kick off on all synthetic hormones and is much 'calmer' without. Could have been a disaster, but if you try it they should monitor you closely so hopefully could cancel if there's a problem? (although I know how frustrating it is to cancel)

Skittles11 profile image
Skittles11 in reply toFruitandflowers

It's just annoying that despite having been 'here' so long myself, I still don't know if no down reg is an okay way forward. I know it's been really stressful not having a period for over 60 days after my last day 1 in September and dont really want a repeat of that, but equally I am worried about the estrogen causing inflammation to the endo and there is nothing preventing that. Natural cycle seems to be out as well because my ovulation is all over the place and totally unpredictable (the sticks say I haven't ovulated but when I am scanned there is evidence to say I have) so it is too risky to go on a natural cycle. Makes me really cross with my body that everything seems to be a problem. I guess I will just have to trust my clinic.

Thank you so much for your reply x

Fruitandflowers profile image
Fruitandflowers in reply toSkittles11

It's maddening - after three full rounds and one cancelled, the two clinics I've used have no clue what's best (or worst) for me. Each time I think we've got somewhere and identify a possible issue (like progestetone) or protocol that works, it's repeated and I get totally different outcomes - last round I got one egg and it ended very badly. And my doctors shrug and say maybe it was an off month, there are no guarantees, it's just numbers. And the whole time it's mega expensive, time-cosuming, life-eating and god knows what it's done to my body in the long run. I know I have ultimately been very lucky, but I share the frustration and I feel like a human petri dish and no-one is any the wiser despite all the experiments. On down reg, buserelin was the absolute worst for me for many reasons. I still think I have an oestrogen dominance/progesterone resistance, which is apparently a very common hangover from endo. The best outcomes I've had have been very low/minimal oestrogen and a lot of progesterone, and basically rule out fresh transfers because of the oestrogen levels and inflammation. It's so individual but maybe if you've not had a period for so long, your body is effectively down-regulated already and could be very calm/low inflammation going into a FET. And you only take the oestrogen on a FET for a short time before introducing progesterone so maybe it wouldn't have time to cause any major issues. I don't know, just one more theory to add...

Skittles11 profile image
Skittles11 in reply toFruitandflowers

Thank you for putting a positive slant on it and pointing out I am taking estrogen for a short time before introducing progesterone. Sometimes you need people to point out these details as you get locked in to your own head and thoughts. It is extremely frustrating when nobody seems any the wiser after we put ourselves through treatment time and time again. Xx

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK

Hi Skittles. Do you have a one month or three month prostap. I would have thought you needed some down regulation if your lining is super thick. I’m sure they know what they’re doing. Good luck. Diane

Skittles11 profile image
Skittles11 in reply toDianeArnold

The prostap I had was just a one month down reg. My lining has never been particularly thick but the clinic has been satisfied with it in the past. Thanks for the good luck wishes

hazzahill12 profile image
hazzahill12

Hi, just a thought what about buserline to down reg with, good luck X

Skittles11 profile image
Skittles11 in reply tohazzahill12

Thank you for this. I had buseralin on my first fresh cycle and that was the cycle where my ovaries didn't wake back up and no eggs were collected - devastating at the time. I think my body detests down regulation and doesn't wake back up until 3 months have passed afterwards xx

hazzahill12 profile image
hazzahill12 in reply toSkittles11

Oh wow that was long especially with buseraline- That’s awful for you and definitely not what you want. Maybe you have to go with the clinics plan this time. It’s just such a gamble each cycle and that’s the hardest thing we make decisions and never know if it’s the right choice. Please PM and let me know how things go. Xx

Skittles11 profile image
Skittles11 in reply tohazzahill12

To be honest I can't remember how long it was after the buseralin but I know it did switch my body down and that was thought to be the issue in not getting any eggs that round. But yes, I think I will have to go with the clinic's plan and just hope that it works out okay. Thank you for caring xx

Seren0119 profile image
Seren0119

I had a chocolate cyst and large hydrosalpinx so they suspected endometriosis.

I had no down regulation for my FET and it was successful, so don’t worry 🥰

Skittles11 profile image
Skittles11 in reply toSeren0119

Thank you lovely That is reassuring to hear xx

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