Recently had a lap and had grade 4 endo diagnosed and a lot of it removed. Previous to this I'd had three rounds of short protocol IVF with recurrent implantation failure. Doctors now suggesting ultra long protocol (3 months downreg) as apparently it may improve chances for those with endo. Has anyone else here tried this? I'm a bit nervous about the side effects of down regging for that long. I've not even done the normal long protocol before never mind this!
(Have posted this before in Fertility Network group but no joy so trying here)
Thanks in advance!
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RedA28
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I haven't, but I am in a very similar situation to yourself so I would also be extremely interested in any answers
(Have the drs confirmed that your tubes are clear as this can be a reason for implantation failure; hydrosalpinx- mine were removed during my last surgery in June for this reason).
Thanks Chicken. I'll let you know how I go on. I think I've decided to go for it, just a little bit nervous but hopefully it won't be too bad!
I had a little bit more of a Google earlier and I did manage to find some posts from people who had had what I think is the ultra-long protocol, basically three months of the prostap injections before stims. I forgot to bookmark them but will have another look and if I find them I'll send you the links. Basically sounds like side effects can be challenging but also seems some people experience more side effects than others so it will be a wait and see job.
Yes when I had my lap they did a hysteroscopy and dye test for tubes too and they are all clear. I had a HSG when I was first doing fertility investigations and it was clear back then too so can only assume they were clear at the time of the ivf. I've had various other tests for repeat implantation failure and they've always come back clear so... 🤷♀️
Good luck with the next stage of the journey whatever that may be!
I’m so sorry that you’re having trouble with implantation failure. I’m in a similar position to you with stage 4 endo too, also with bowel involvement. I had everything excised about a year ago and then my right tube clipped in June as it was very inflamed to prepare me for IVF. I’ve just had first fresh transfer which failed. It was a good quality embryo so I think it’s definitely down to implantation failure. I wasn’t too surprised to be honest as I had awful sciatic pain in my leg, hip and back all throughout the stimulation process. So I just thought that it would have a negative impact on it working as my body was not in a good way.
I posted on the fertility network to get some advice and quite a few people have had 3 months of Prostrap and then a fresh cycle and success. So I think you should definitely go for it. It seems to work well for people with stage 4 endo. I guess it will seem long but fingers crossed it will be worth it in the end. I think the side affects aren’t too great but I already have awful endo pain so feel like I can take on anything now! I’m going to talk to my clinic about it at my follow up next week. I’ve got a frozen one to try that I’m hoping will be more successful as it won’t be put in after having all the stimulation meds. I’ve read that it’s also a good option for people with severe endo! Have you ever had a FET?
Wishing you loads of luck and let me know how you get on xx
Thanks for the reply! I think thats a really good point, if we can handle endo and the pain, we can probably handle anything!!
I have had one FET from the last round I did and interestingly although it ended as a chemical that is the first time there was even a sign of attempted implantation so that might be worth thinking about too...
Sorry your fresh transfer didn't work, its rubbish isn't it. But good luck with your frozen embryo, all fingers crossed for you!
Hi Red, I hope you don’t mind me asking you a question. I am going through a long protocol (3months) on prostap. I was wondering if you would be able to tell me more about the timeframes ie do you start stimulation after the 3rd injection or after 2nd? My case is a bit different as I will need an ovarian cyst drained beforehand also but any information would be helpful. All the literature I have received refers to the short protocol and I am therefore not sure what to expect. Very little online about this.
Yes there really isn't much online is there?! I started stims a couple of weeks after the third injection, if that helps? I had to have a scan first (as you would when starting stims in any round). Then after that the timelines were exactly the same as any other protocol. Let me know if there's anything else you want to know. Wishing you all the best for your round! I don't know whether you've seen my other posts - my ultra long round was successful but unfortunately I miscarried. However, it was my first ever pregnancy so in many ways I think the ultra long protocol was successful for me. I hope it works for you!
Hi Red, thank you for responding and very sorry to hear about your loss. This is my first ivf attempt, it’s been delayed due to covid, emergency surgery (bowel endo) and now a large 13cm ovarian cyst in my remaining ovary. I was not aware that they also did a scan before the stimulation, that’s helpful to know and the timeframe. I don’t have any friends who have gone through this to ask. My consultant mentioned that the cyst would be drained sometime after 2nd injection, however, has been vague about timeframes and the rest of the process, potentially as the cyst drain may not go well. Thank you again for your help, if I think of anything else I’ll let you know ps if you think of anything that you wish you had known before for your ivf round please share!!
Hope the cyst drain goes well and enables you to continue on track with the round. If it is helpful to know the timescales for the rest of the round itself - I had a baseline scan a couple of weeks after the third injection then started stim injections the next day or day after. I had another scan 7-8 days after that to check how things were progressing, then another scan a couple of days later, then another one another couple of days later At this point they then told me to take my trigger injection at a certain time and had my egg collection 36 hours after that - the timing is v strict. I then got a call the day after egg collection to say how many had fertilised, then a call on day 3 with progress of embryos, then a call on day 5 to say how many they were transferring and what time to come in for transfer. Then the dreaded two week wait (well its 9 days at this point as the two weeks is from egg collection) at which point my clinic do bloods for a beta hcg and you find out later that day. So that's my experience timeline wise but every clinic is slightly different and also lots depends on your response to things during the stims phase and also then how embryos develop etc so your timelines might be slightly different. I'm surprised they haven't been more specific with you though! Hope that helps. In terms of what I wished I knew - after 4 rounds now I would say don't sweat the small stuff. So much is out of our control and just try to accept that and go with the flow.
Hi Red, thank you so much for the information that’s really helpful. Can’t wait to get this drain done as it’s quite uncomfortable. Sounds like you’ve been through a lot, it’s all quite daunting particularly when you are not sure what to expect. It all seems to happens very quickly once the injections start, I thought maybe with the ultra long protocol it would all be a bit slower. I have tried to get est dates and a best guess for the cyst drain but the consultant seems reluctant to tell me. All I know is that he’d like me to be on prostap for 2 full months before the drain. I’ll try to take your advice and go with the flow!! Thank you
My clinic do scans etc every day except Sunday. Embryologists did do checks of the embryos on Sundays too. Don't worry, they always make sure timings work out.
In terms of side effects, in both short and long protocol I never had any from the stims. I had some from the progesterone (sore boots and bloating mainly). Obviously for the ultra-long I had 3 months decapeptyl and I did have some menopause type symptoms from that - mainly sleeplessness, vaginally dryness and reduced libido. Got the odd hot flush too but not very often. Overall I think I got off fairly lightly.
I thought maybe it was Mon-Fri only. I had booked tickets for Adele but I probably won’t be able to go now with everything up in the air :(. I’ve have similar symptoms and more. I actually had a good cry today over nothing as I had tried to get an indication of dates from the centre and got another vague response back. I even started to cry while telling my husband about it when he got home. Yikes! That’s really not like me. Glad to hear that you didn’t have any bother on the stims, hoping I’m the same. Thanks again for all your advice!
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ps if you think of anything that you wish you had known before for your ivf round please share!!
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