Adenomyosis treatment and experience

[Gold00]

Hi everyone,

Just wanted to hear from those who've experienced adenomyosis, did down-regulation for a few months and then had a successfull pregnancy. What down-regulation medication were you on? Did you have any side effects? My doctor says I would be experiencing major side effects, as essentially my body will be put in a state of artificial menopause for a couple of months, which sounds quite scary...

I am currently in the 2ww with an untested embryo (have 2 more frozen: tested and untested). However, if this and the next untested embryo fail and prior to transferring the tested one, I would like to ensure I've given it all, hence why want to calm down the diffuse adenomyosis I have, the diagnosis of which came as a shock as I have absolutely no symptoms or pain.

Many thanks.

[JA-fnuk Partner Nurse Fertility Network UK]

Just wanted to wish you luck with your treatment If down regulation medicine needed it help with your adenomyosis -dampen it down so to speak Most common side effects are hot flushes and headaches

Good luck for the future

Janet-Partner

[Gold00 in reply to JA-fnuk]

Thanks Janet, really appreciate it.

[Keepondreaming]

Hi

I have Adenomyosis and I had Prostap injections for down regulations. We had a frozen embryo transfer but sadly it failed.

Wishing you lots of luck x

[Gold00]

Thanks Keepondreaming and so sorry to hear about your failed transfer. Can I ask if you experienced any side effects whilst on Prostap? Did you transfer a tested embryo?

Wishing you best of luck on your IVF journey!

[Keepondreaming in reply to Gold00]

Hi

No we didn’t test we had one day 5 embryo from three egg collections. Tbh we are concerned that 5eggs fertilised but only one progresses to day 5. A total of 7 eggs was collected across the three cycles.

Yes the Prostap did give me side effects mostly hot flushes and dizziness the dizziness became constant. But I was willing to put up with the side effects for a cha fe for it to work but sadly it didn’t.

Hope this helps xx

[Gold00 in reply to Keepondreaming]

Thanks Keepondreaming. Not sure if it's of any help , but I found IVF cycle outcomes not to be affected by uterine health issues. Even with adenomyosis and 5 fibroids (biggest one being 9cm) I was getting between 2-4 embryos per cycle without ICSI. What I did find though is that as soon as I started taking supplements and antioxidants, at the age of 42, I got a euploid embryo. If you're interested, I can share exactly what I was taking. XX

[Keepondreaming in reply to Gold00]

Hi

Yes please - what is Euploid embryo?

I have been taking multiple vitamins for month and have increased antioxidants in my diet following advice. Happy for you to DM me if you would prefer 🙂

We require icsi due to male factor fertility also. Thank you xx

[Gold00 in reply to Keepondreaming]

Euploid embryo is a tested embryo that is genetically healthy. I'll DM you the list of supplements and antioxidants I was taking.

[Bonaire12 in reply to Gold00]

Hi Gold,

Would you mind dm’ing me what you were taking also please 😊 it sounds helpful! Xx

[Gold00 in reply to Bonaire12]

Hi Bonaire12, sure, I'll dm you.

[Apricottree in reply to Gold00]

Hi would you send me the list too please? I also have adeno x

[Gold00 in reply to Apricottree]

Sure, will do.

[Eternalwarrior]

Hello lovely

I have adenomyosis and I had one 3 month Decapeptil injection which helped a bit calming down the adeno but we decided to do a couple more of monthly injections (Zoladex). We then transferred a PGT-A tested embryo that gave us our son. My story is long and complicated as I have quite a few conditions, but to answer your question, I would definitely recommend down regulating to calm down the adeno. Good luck! Xx

[Eternalwarrior in reply to Eternalwarrior]

I won’t lie about the side effects … they were not nice at all… hot flashes were the worst… but it was totally worth it for me x

[Gold00 in reply to Eternalwarrior]

Thank you so much Eternalwarrior for sharing your story and I am so happy to hear that you had a son after everything that you had to go through.

If you don't mind me asking, did you have Decapeptil injections in any of your IVF cycles? If yes, did you have any symptoms then as well? The reason I am asking is I've had a few IVF cycles, where I had daily Decapeptil injections, but I didn't have any side effects whatsoever, so I am hoping that that might be an indication of how I would be feeling during a few month of down regulation with Decaptil as well.

Also, as I am still learning all about this, is it just one Decapeptil injection or daily Decapeptil injections that would required during down regulation?

Thanks again for all your help!

[Eternalwarrior in reply to Gold00]

Hello lovely,

Thanks for your message. I did have Decapeptil daily injections before, during stims, and didn't have any major side effects. The monthly injections are just 1 injection that lasts for a month, so they are different (or the 3 month injection I had) and the side effects were worse for me, unfortunately. But everyone reacts differently to hormones and you may be lucky. However, as I said, if I was given the choice again, I would go with it, as it gave me my son xx

[Gold00 in reply to Eternalwarrior]

Thank you for your message, really appreciate it! xx

[hazzahill12 in reply to Gold00]

Hi sorry to jump on your thread I just wanted to say I have adeno also and agree with eternal warriors comments. I had zoladex for 6 months prior to IVF. Was meant to be 3 -4 but due to Covid it ended up as 6 months. Then straight to buseraline for down regs prior to stims. For me it wasn’t great being on it. It made me have hot flushes, my memory wasn’t great and I just felt crap almost hormonal all the time. However in my experience it did revert back quite quickly once off it. So it’s definitely temporary. I then had my cycles I don’t get many eggs so 3 each collection was good for me and one to blastocyst. Unfortunately my transfers were not successful. But I did go on to conceive naturally a couple of months after my last egg collection before my transfer. That is my 16 month old son, I then conceived naturally again and have an 8week old daughter. So I would agree down regs are definitely worth a go to try and calm things down. I wish you all the best. X

[Gold00 in reply to hazzahill12]

Thanks hazzahill12 for sharing your story and congratulations! If I can ask, how many months were you down regulating on buseraline?

[hazzahill12 in reply to Gold00]

Thank you. So I was on buserline the first cycle about 8 weeks. So had last zoladex injection and 3 weeks later a week before I was due zoladex again I started buseraline. In the second cycle again about 8 weeks although this was so close to the first cycle i didn’t do zoladex and the 3rd cycle I came off zoladex a month early (did 2 months as meant to do 3)struggling with side effects and was on buserline about 12 weeks. In this time I only had about 3/4 periods they aimed to keep me down regged as much as possible to avoid too many periods as they believed it unsettled things again, having periods after the zoladex and down regs had calmed it down.

[Gold00 in reply to hazzahill12]

Thanks Hazzahill12, really appreciate it!

[Hopecontinues]

Hi, I have adenomyosis, but it's only mild apparently. I had lots of advice from different doctors. Some said 2 months down reg, some said 1 month. In the end I did a mock cycle, then 1 month down reg with prostrap and hardly had any symptoms other than being emotional. I'm 28 weeks pregnant after that, so it worked. I guess it depends on how bad the adenomyosis is as to the treatment. If you don't have any symptoms it might be mild.

I've done down regs before using Buserelin (before i knew i had adenomyosis) and felt awful, really emotional and hot sweats. No idea why it wasn't as bad this last time.

Keep the faith. This process is an emotional roller coaster. I thought it would never happen, but it did.

Best of luck

X

[Gold00 in reply to Hopecontinues]

Many thanks for sharing your story. Besides the bulky uterus, I have absolutely no other symptoms of adenomyosis. I even found out about the diagnosis by chance and only when I requested to get a copy of my post-op ultrasound results: frustratingly neither the sonographer, nor my doctor made any mention of adenomyosis when telling me about the ultrasound findings and just said that beside a polyp, everything else was fine...

Yes, this process is certainly an emotional roller coaster and I am glad it worked for you in the end. Congratulations on your pregnancy and all the best!

[Hopecontinues in reply to Gold00]

Thank you. It's a bit of a miracle really. I had 2 eggs collections and transfers before adenomyosis was diagnosed. I also had a subseptate uterus they missed. The only reason I found any of it was because I had fibroids and went for a check up on my work medical insurance. They sent me for a scan at a top Harley street ultrasound place, who found it all. I've had so many setbacks, so I hope that gives you some hope that you can overcome the obstacles in your way.

X

[Gold00 in reply to Hopecontinues]

Thanks, really appreciate it! xx

[Keepondreaming in reply to Hopecontinues]

Hi

Sorry to jump on this thread - great news it worked for you!!

Just wanted to clarify did u have the down ref before egg collection? Or only before transfer? I only had it before transfer (we did a freeze all so the down reg could be done)

Just wondering if I d down reg before collection if I might get more eggs!!! Xx

[Hopecontinues in reply to Keepondreaming]

The Buserelin was before egg collection 3 years ago. I wanted less eggs, as I kept getting OHSS. Still got 25 eggs though.

The prostrap was before transfer of donor egg, so no egg collection for me.

[Keepondreaming in reply to Hopecontinues]

Ah thank you for clarifying!! I hardly have any eggs unfortunately!

[Hopecontinues in reply to Keepondreaming]

Have you tried DHEA?

[Keepondreaming in reply to Hopecontinues]

No what is this??

[Hopecontinues in reply to Keepondreaming]

They recommend it in it starts with an egg.

[Keepondreaming in reply to Hopecontinues]

Thank you I’ll look into this!

[TTC0011]

hello, I’ve had Buserilin and Prostap. I did ok on Buserilin but Prostap floors me personally - joint pain, headaches and hot flushes mostly but not enjoyable. I don’t have success yet after 5 transfers but I have been down regulated each time.

[Gold00 in reply to TTC0011]

Thanks TTC0185 for sharing your experience. Wishing you best of luck on your IVF journey! xx

[Chantysal]

We did decapeptil but i had no major side effects . My road was extremely long but it did work for us ans im now 25 weeks pregnant. Also we did Pgta test our embryo

[Gold00 in reply to Chantysal]

Thanks Chantysal and congratulations on your pregnancy! Your story definitely gives me hope. May I ask how long were you down regulating with Decapeptil?

[Chantysal in reply to Gold00]

Sorry for the late reply. I took it for a month then after few weeks after stopping did ny transfer

[Gold00 in reply to Chantysal]

Thanks Chantysal.

[Sarakht]

hi Gold00, just wanted to find out how did they give you the diagnosis of adenomyosis. The reason I ask is you mentioned no pain or symptoms which is what I have. My nhs consultant confirmed adenomyosis and to my surprise when I started my ivf treatment in turkey the dr said I do not have it. I have a 8 month old from my first cycle abroad and had taken the Yasmin pill for 21 days prior as down regulation prior to treatment without any side affects. I hope you have a positive outcome and just wanted to share that even if you do have adenomyosis there is definitely hope

[Gold00 in reply to Sarakht]

Hi Sarakht, thank you for sharing your story, it definitely gives me hope! I found out about the adenomyosis diagnosis when I had a post-op ultrasound: 4 months prior to that I had myomectomy so this ultrasound was to check that I was healing properly and could restart IVF. When discussing my ultrasound results, neither the sonographer nor my doctor mentioned adenomyosis: they said beside a polyp, everything else was fine. I only found out about it when I requested a copy of my ultrasound findings, which confirmed adenomyosis due to bulky uterus.

Not sure if I've had adenomyosis for a long time ( MRI and another ultrasound done done 1 and 2 years ago respectively also showed bulky uterus, but it was attributed to the 5 fibroids that I had. The uterus size in the latest post-op ultrasound showed the uterus measurements were much lower than before, but still above normal) or it was caused by having surgery.

My doctor, who is a Professor, says adenomyosis does not affect implantation, as embryo attaches in the endometrium and not myometrium, where adenomyosis is. However, as implantation is not an exact science and from everything I've read adenomyosis can negatively affect implantation and pregnancy, I would like to ensure I've given it my all when I transfer my only tested euploid embryo.

If I may ask, where you originally diagnosed with adenomyosis via an ultrasound or based on the symptoms you were having? Did your symptoms disappear when your Doctor said you no longer had adenomyosis?

[Annjali]

hi I had mild adenomysis

Was suggested long protocol and it was a failed cycle

I got a second opinion from another clinic and amongst other things who confirmed short protocol works well, which is my thoughts too as I believe downreg on long protocol doesn’t work well with me.

I hope this helps.

[Sweethear]

hi a have adenomyosis and was put on Decapeptil injection monthly for 3 months before my frozen day 3 Embrayo which worked and I had my daughter I was 39 years old I have had two more transfers after that with Decapeptil injections which did not work I got some side effects like hot flashes sweating it was horrible but I was ready to do anything to achieve my dream. So I will say do what ever you can to achieve your dream good luck I wish you all the best

[Gold00 in reply to Sweethear]

Many thanks Sweethear! If you don't mind me asking, where you transferring tested or untested embryos?

[Sweethear in reply to Gold00]

It was untested Embrayos