IVF with Severe Endometriosis and Zoladex

[whit84]

Hello everyone,

I'm new to forums, but have been reading so many of them lately I'd like to share my story...


I knew something was wrong after I stopped taking my birth control pills (after nearly 15 years being on them because I had horrible periods) a year before my wedding because we wanted to try to start a family. I went to my GP and told her that I felt something wasn't right - that my periods were heavy, painful and that I spot a lot in between periods. I also told her that my mother had endometriosis in her late 30's. (I was 32 at the time) I initially had an internal ultrasound done that showed no sign of endo, but that I had a bicornuate uterus, to which my GP told me I would have a harder time getting pregnant and staying pregnant..great! I was then told that I was probably just having a lot of UTI's and that it wasn't likely that I had endo.. fast-forward a year later when the pain and spotting were getting out of control and I wasn't falling pregnant, and I demanded to see a specialist. After waiting 3 months to get in, 3 weeks later I had a laparoscopy and I was diagnosed with stage IV endo and deemed infertile. It had spread everywhere. I was told the only way I would be able to have a child is to go through IVF. I was also told that my bicornuate uterus would not be an issue and that it was only very slightly misshapen - at least some positive news..


Because my endo was so severe, I was put on Zoladex for 3 months before we started IVF. I've read some other threads about the effects of Zoladex and was glad I wasn't alone. I didn't like the side effects one bit, but I pushed through telling myself it was only temporary. My Dr. wanted us to start IVF after my second period from Zoladex so it was all out of my system.


The first cycle was nerve-wracking, but I felt pretty good with all the injections. We had 19 eggs collected, with 2 fertilising on day 1, but unfortunately none made it to transfer day.. it was devastating. My follicle scans also picked up more endo and a cyst.. so that added to the devastation. Feeling like a prisoner to endo...


The next cycle we started right away and I was put back on Zoladex as the down reg. and was given a lower dose of stims. This was really confusing to me since I initially waited for the zoladex to be out of my system before starting the first round of IVF. This time we had 21 eggs and 12 fertilised on day 1. We had 3 make it to day 5, and another 6 made it to day 6. So we have 8 frozen! This round went much better than the first and hope was regained. Maybe we can trick the endo! Unfortunately the fresh embryo transfer didn't stick...


So now I'm back on the Zoladex AGAIN and will be doing a FET in a few weeks. At this point the zoladex is really affecting me.. I feel like a crazy person.. my mood swings are out of control. I want to quit my job every other day.. I've become a lot more introverted. And of course this is all along with the hot flashes, insomnia and headaches. It's been a tough year and I feel so out of control of my life. It seems like every cycle is getting better and that maybe it's due to the zoladex for tricking my endo, but the toll it's been taking on my mental state recently is starting to concern me.


Has anyone else been through a similar situation with zoladex? I can't seem to find much information on the use of zoladex while going through IVF. Everything I find is about using it before the IVF treatment, not while going through it.


Any insight or advice would be greatly appreciated! xxxx

[Rocky27]

Hi Whit84,

I just wanted to let you know that I’ve been through much of the same thing too & please know you’re not alone. I also understand how crap the journey can be & I’m sorry you’re going through it too.

I had my first laparoscopy in 2013 I think it was where a lot of bad endometriosis was removed. I’m pretty sure I was on zoladex for 4 months afterwards too. I also found the medication hard to take & going through that on top of an already emotionally draining journey was hard. I also have a bicornuate uterus. We did ivf late 2014 & I’m so lucky to have a daughter from it. I did get OHSS at the time. I didn’t use zoladex as part of ivf but I think different clinics will use different meds.

Fast forward to now I’ve had 3 miscarriages in a row & am about to have another laparoscopy at the end of this month. I don’t want it but I know I need it as I’m in a lot of pain lately. I’m expecting to be put on zoladex again after they remove more endo.

Good luck with your next FET. I hope it all goes well for you I have no idea about using zoladex as part of an ivf cycle sorry but I’d maybe ask your clinic if you’re not sure. Or hopefully someone else on here might be on it for the same reasons during ivf too.

This journey is so hard & I hope you get your answers soon.

[Alish1]

Hi whit84,

Thanks for sharing your story and wishing you all the best - unfortunately I can’t offer much, but I too was on Zoladex (four months) after a lap to remove stage 4 endo and fibroids, so I know about the hot flushes and symptoms. Prior to the lap, we had our first IVF cycle, 3 eggs, 1 fertilised and resulted in a BFN.

When my period returned I went straight into IVF again, however the cycle was cancelled after a week due to poor follicle response, I only had three develop with only one in contention. Going straight into the next cycle now and hoping for a follicle count improvement. I hope the Zoladex has not affected my egg reserve as it was already on the low side.

I honestly haven’t heard any cases of Zoladex use while on IVF. Doesn’t Zoladex suppress the ovaries from working and shut oestrogen down? I hope you find some management for the symptoms soon! It’s such an emotional rollercoaster.

[McyD18]

I don't have endo, but have a thing called adenomyosis and I have to do long long down regs with my Ivf.
Zoladex then Synarel!
Before I go on, I did have a successful pregnancy from this and now have a beautiful 2yr old DS.
Now trying for #2 and have had 2x long long down regs this year and am currently having a break as I keep gaining weight on them and feel like a crazy person on the meds.
My last one was the worst, my hot flushes weren't as bad that time, but the insomnia and the moods swings and the headaches were horrendous!
I felt like I was going mad, but I know the outcome is so worth it when it does work, and I will do it all again (but not until next ur)
I wish you all the best, and also know your not alone, there are a heap of ladies on here I have spoke to in the same boat.
Just remember on the hard days that it's all worth it to get that baby in the end.
Here if you ever need to vent, chat or ask any questions!
🌌🌌🌌 baby dust to both you ladies.

[gorgeousgeorge]

Hi i know this isnt related to the zoladex but was just reading your post. Im a long time ivfer myself with endo. Have you asked your fs about your fertilisatuon rates as only having 2 fertilise out of 19 eggs is very very low rate and even 21 eggs with 12 fertilising is around 50% which is still low. I would definitely be asking my fs what he thinks about the low fertilisation rates and make sure you get all the tests for partners sperm, especially if your frosties dont work, which of course i hope they do :-)

[whit84]

Thank you all so much for responding to my post and for letting me know I'm not alone!

Rocky, I'm sorry to hear you have to go through another surgery - I have a feeling I will have to go through another one eventually as well. I hope that is your answer though and it all works out for you! Happy to hear you have a daughter- gives me hope!

Alish, I'm sorry to hear things haven't worked out the best for you yet. Yeah, using the zoladex during IVF is confusing because it does shut down your system.. so I guess they are trying to trick my body by taking over full control of what my body would do naturally because my endo is so aggressive. It seems to have worked during the last cycle in getting embryos, so hopefully it works for the transfer, but I don't really understand it completely!

McyD, I've read about adenomyosis - it seems quite similar to endo. I'm so happy to hear you have a son! It gives me hope Sorry to hear about your side effects.. sounds like we're in the same boat! At least I know it's "normal", whatever that is anymore!

Gorgeous George, We've had my husband's sperm tested and we ended up doing ICSI in the 2nd round since the first round was such low numbers. I think between the ICSI and the zoladex that's what helped us the second round. I did ask my FS about genetic testing of the embryos, but she said the quality of all 8 were very high. I'm trusting her judgement at the moment. If we end up doing another round I will probably push for the genetic testing. Is there anything else you can think of that I can ask?


I did end up speaking to my Dr and she did a scan and my lining was thin enough, so she put me on oestrogen which has helped with the side effects tremendously. I'm feeling much better now and hoping this cycle works out for us. It's still a bit confusing taking the zoladex to make my lining thin and then going on oestrogen and progesterone to thicken it back up for the transfer.. but we'll see what happens!

All the best and thanks again! Xx

[Loz3119]

Thank you all so much for responding to my post and for letting me know I'm not alone!

Rocky, I'm sorry to hear you have to go through another surgery - I have a feeling I will have to go through another one eventually as well. I hope that is your answer though and it all works out for you! Happy to hear you have a daughter- gives me hope!

Alish, I'm sorry to hear things haven't worked out the best for you yet. Yeah, using the zoladex during IVF is confusing because it does shut down your system.. so I guess they are trying to trick my body by taking over full control of what my body would do naturally because my endo is so aggressive. It seems to have worked during the last cycle in getting embryos, so hopefully it works for the transfer, but I don't really understand it completely!

McyD, I've read about adenomyosis - it seems quite similar to endo. I'm so happy to hear you have a son! It gives me hope Sorry to hear about your side effects.. sounds like we're in the same boat! At least I know it's "normal", whatever that is anymore!

Gorgeous George, We've had my husband's sperm tested and we ended up doing ICSI in the 2nd round since the first round was such low numbers. I think between the ICSI and the zoladex that's what helped us the second round. I did ask my FS about genetic testing of the embryos, but she said the quality of all 8 were very high. I'm trusting her judgement at the moment. If we end up doing another round I will probably push for the genetic testing. Is there anything else you can think of that I can ask?


I did end up speaking to my Dr and she did a scan and my lining was thin enough, so she put me on oestrogen which has helped with the side effects tremendously. I'm feeling much better now and hoping this cycle works out for us. It's still a bit confusing taking the zoladex to make my lining thin and then going on oestrogen and progesterone to thicken it back up for the transfer.. but we'll see what happens!

All the best and thanks again! Xx

Hi whit84

I was diagnosed with endo and adenomyosis after a laparoscopy earlier this year (after 4 failed transfers with good quality embryos).

So my new FS recently put me on an ultra long down reg - so I had 2 Zolodex injections 4 weeks apart. Then once the second Zolodex wore off (about 4 weeks after the injection) I started an IVF cycle. Luckily for me - I only had the hot flushes (no mood swings). I unfortunately had no luck with eggs that cycle which I think was due to the different stimming medication which my FS prescribed (lots of follicles however not many eggs). However, I had an FET that same cycle with an embryo from a previous IVF cycle and although it’s early days, I’m currently nearly 6 weeks pregnant from it Zolodex can work!

My FS says that the Zolodex calms down the endo and makes it a much better environment for the embryo.

I wish you all the best !

[whit84]

Hi Loz,

That's wonderful news! Congratulations! And thank you for your reply, I really appreciate it 😊 Fingers crossed the zoladex works for me as well!

[Allthebest]

Hi Loz,

That's wonderful news! Congratulations! And thank you for your reply, I really appreciate it Fingers crossed the zoladex works for me as well!

Hi hun, I know this post is old, I tried to SMS you but they did not go through. Hope you don’t mind me asking how did you go with IVF after Zoladex treatment? I hope to hear good news from you,

All the best x