This could be a long explanation :
I'm hoping for some success stories from women who have been diagnosed with Adenomyosis with a MRI and then gone on to have a BFP and successful pregnancy after treatment.
I had 4 full stim cycles and ET's and also 3 FET's with my 1st clinic. After 7 BFN's we switched to another clinic in Adelaide. My new FS immediately suspected Adenomyosis because I'd always had good embryo's transfered but there was never any attempt at implantation. This was confirmed when I had a MRI which is the only way to diagnose it. (Adenomyosis is similar to endometriosis except you get a build up of blood in the muscles of the uterus each month. It causes the same sort of damage and implantation failure - this is a VERY basic explanation) The normal measurement for the lining is 5mm, anything over 10mm has a 98% implantation failure rate - my measurement was 15mm! (I'm not sure where they measure - it's obviously a specific area in your uterus for checking for this condition, not the normal space/ measurement they do as part of an ivf cycle pre-pick up and transfer) To say we were stunned at the time is an understatement and the fact that our previous clinic never thought to test for this and wasted our embryo's for 7 transfers is another story altogether - we are still trying to decide what to do there.
Anyway, thank you if you are still reading. The treatment for Adenomyosis is to be supressed via a long, long, long down regulation, i.e. you are put into menopause for 8-12 weeks using an implant called Zoladex before you even begin a cycle. This should kill of the build up and leave a clear uterus for implantation. I am currently 3 weeks into my first implant and will have my next in another week. As I mentionned at the beginning of my essay I would love to hear from anyone who has been through this and ended up with a healthy bub after going through this protocol.
I should also add that I have every confidence in my new FS. He not only diagnosed this condition within 2 weeks of my 1st appt, he also found that my thyroid isn't working (via BT) and is treating me for that and will also be doing a hysteroscopy and NK biopsy in the next few weeks. I feel like someone is finally doing everything they can to help us achieve our dream.
Thank you so much if you have managed to read this far , can you please share with me if you are also going through the same protocol (I would love to chat throughout this time) OR if you have had success??? Thank you
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06-01-2011 21:16 #1
Adenomyosis - Have you had a BFP after diagnosis?
07-01-2011 07:33 #2Senior Member
- Join Date
- Nov 2008
Lilybaby, I have adenomyosis and have had 7 failed cycles. After the last failed cycle, a lady on BubHub put me in contact with an FS in Adelaide that specialises in adenomyosis and I am now currently about to have my 2nd Zoladex implant and hope to cycle again in February. (Almost fell over at the price of the Zoladex, I know we should be used to it in IVF). Sorry I can't help you with a success story just yet, but would love to chat with you throughout this cycle as we seem to be more or less at the same point. What else has your FS planned for this cycle? Just want to make sure we are doing everything as this will be our last and I want to give it everything.
I wish you every success and hope that this cycle brings your BFP.
The Following User Says Thank You to Jen42 For This Useful Post:
07-01-2011 09:33 #3
It was lovely to hear from you. Did your FS/GP write an authority prescription for your zoladex? It makes a huge difference in the price. If not, see if you can get one before your next implant (if you are having a 3rd). I'm not sure what the protocol will be for my next cycle, I see FS for next implant in just over a week so might find out more then otherwise it'll be in a months time. I think it'll depend on results from latest amh test, re-testing my thyroid to see if the treatment is working and NK biopsy results.
Is your FS trying anything different this time apart from suppressing you with zoladex?
Good luck with your lucky 8th cycle, I hope it is a lucky cycle for us both.
P.S. I'll send you a PM as well
09-01-2011 09:08 #4Junior Member
- Join Date
- Jan 2011
I have adenomyosis along with a range of other problems. A quick explanation is: Adenoymyosis, Sever endometriosis, left tube not working, right ovary only a little left after damage from cysts and operations (total of 5 operations), adhesions and scar tissue all throughout pelvic area. As soon as I go off the pill I just grow painful cysts. I have also had zoladex after a previous operation, and understand the side effects. My doc did mention me doing it again before the IVF but I didnt, maybe I should have.
I am on lucerin injections and booked in for egg pick up January 24. This is our first IVF cycle, I am only 25. I am also a little worried that if this doesn't work how bad my endometriosis will be back. But will have to deal with that problem then and have to think positive. I am also worried about the FSH injections when my ovaries are stimulated because I have terrible pain during natural ovulation, worse than period pain... debilitating. It is so bad with one egg, let alone 10 or 12 possibly.
I will let you know how I go, my doc really thinks that even though I have all the other problems it will most likely be the adenomyosis that will really be the main problem due to trying to implant into the thick uterus wall.
Fingers Crossed, thanks for letting me share my story.
The Following User Says Thank You to FingersCrossed123 For This Useful Post:
09-01-2011 17:45 #5
Hi lily....as you know I have (suspected adenomyosis) but just to let the other girls know & to share a little light on my story & how successful the long long down protocol really can be
A brief history for those who don't know me I have done five cycles in total. (3 stim & 2 FET) also had polyps removed after 1st stim cycle & after our 3rd failed transfer which was a frostie cycle I had Endo biopsy, & a lap/another hys. The lap showed I had severe endo which was all successfully removed. Also had a couple of fibroids but didn't need to have them removed. My FS then put me on zoladex for Approx 6 weeks. Reason being was as I had to wait that long to recover from lap sugery before doing another stim cycle. The reason he put me on zoladex was to prevent any endo coming back in the mean time. Well we did our 3rd stim (4th transfer) got the best quality embies ever. Had 2 transferred & 3 frozen which is better than we normally get doing an antagonist cycle so for that we could see the improvement already. Unfortunatly we were unsuccessful BUT as I had the endo which had just been removed we figured it was just like starting from scratch & hopefully it will happen soon. Anyway we used our frostie next month (didn't have the month off as recommended & had in the past with FET) The transfer was done by a brilliant specialist at repromed (Adelaide) by the top FS who specializes in adneyomosis. (same one as lily) I spoke to him of my concern as to how we always get grade 1 embryos transferred but never made it to implantation. He looked through my notes & 5 mins later after reading my endo biopsy results picked up something which wasn't picked up earlier. He believed the reason implantation hadn't taken place with my results from the biopsy along with the fact I had severe endo that I most likely had adneyomosis. Although I never had the MRI to find out for sure I'm pretty certain from the information he had given me from going through all my notes from past tests that it was in fact adneyomosis and the fact we did a long long down reg is what gave us our BFP. So for us it took 1 stim & 1 fresh to get the results from using zoladex. Although we may not of done a long long down reg to treat adneyomosis we used the very same protocol & now looking back thank goodness we did as that's what I have (99% positive)
A friend of mine had also done 8 transfers in total & it wasn't until then this same specialist diagnosed her with adneyomosis also. She also did a long long down reg & finally got her BFP on cycle no 9 & is currently 28 weeks pregnant
I wish you girls all the best with your upcoming cycles & pray the long long down will bring you all buns in 2011 xxxx
The Following User Says Thank You to digbyleigh For This Useful Post:
09-01-2011 17:50 #6
Sorry that was bubs not buns!! Damn phone & spell check.
Sorry also for such a long post. Just wanted to share my story as im sure this protocol will also benefit you all as well
09-01-2011 19:50 #7
Digby - could have been buns in the oven you meant!!
I have suspected adenomyosis. OUr last cycle got BFN, so in we go tomorrow for FS appt. I'll be booked into an MRI and we go from there.
Digby - this sounds really quite promising. I didn't know your history, so good to know.
Lily - sounds promising!
I am also at Repromed. Digby - who do you see?? I see CK.
09-01-2011 21:07 #8
Hi MG...... I was seeing RH at Repro but after 3 cycles we decided to get a 2nd opinion and saw AH at FSA. Straight away he recommended I have a lap (thank goodness I did as there would of been no way of getting preggers with all that endo) we then continued on at Repro under RH who put me on the zoladex & reccomended the long long down reg to prevent the endo coming back. It was then Dr T at Repro who did our winning transfer & also was concerned & suspected I had adneyomosis.
Lily......how are you going on the zoladex? I hope it's not too nasty & giving you headaches xxxx
09-01-2011 21:30 #9
Ahhh! KT did my biopsy and also the et that resulted in my bfp with my ds. A friend also had him as her fs. I have said in past I would change to him if the time came. Interesting.
Sent from my iPhone using Bub Hub
09-01-2011 21:39 #10
Fingerscrossed - thank you for sharing your history. I really hope the endo stays away and you have success with this cycle. I hope you dont get too much pain from the stimulating drugs, I've always known when I was ovulating too and which side because it was always painful but not as bad as yours by the sounds of it. Keep in touch and let us know how you are going - good luck.
Digby - it's always nice to hear from you and thank you for sharing your history and success on this thread. I'm hoping for (and feeling hopeful) that I'll have a similar outcome. Either 1st or 2nd time success on this protocol would be perfect. Take care of yourself. P.S. so far the zoladex have been ok, I've had heaps of hot flushes but the headaches haven't been too bad yet, nothing that a panadol can't fix.
Moongazer - when do you have your MRI? I found it very freaky but it was worth it to find out what the problem is - finally!! They gave me a muscle relaxer where I went for it and it makes your eyes go very blurry. Quite freaky because there was a warning label just above my head in the machine that I could read for the 1st 10 minutes but then all of a sudden I couldn't read it anymore. Such a weird feeling. Good luck for your appt, I hope it all turns out ok for you and you get utd with bub no. 2 asap.
afm, nothing to report just lots of hot flushes as I said earlier. I know it's been hot lately but when I'm sitting at a table with 3 other people and they are all fine and I'm dripping with sweat (sorry tmi) it's just yuk! Thank goodness for air cons.
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