[Lizclomid]

Hello. I will be doing IVF this year. I have adenomysis and a history of endo (27 year history)!
I would love to talk to anyone going through IVF this year and if anyone has any advice.
I'm 39 which doesn't fill me with the great hope either!

[G&PMom]

to this forum! There was a woman who just posted about adenomyosis on another thread, her username is Janel83.

I have severe endo and had a major myomectomy when I was 33. I got married and my re recommended ivf to allow her opportunity to implant best embryos in best spot in my pieced together uterus after surgery. I was 38 and did very well despite disease and age, had my son in 2009 and did a frozen embryo transfer at 39 and delivered baby girl at 40! I didn't have ademomyosis as far as I've been told but definitely had very severe endo and a very large fibroid in back uterine wall along with 9 smaller ones! So anything is possible!


If you are otherwise healthy and can explore vitamin and dietary supplements to help in process, it will be helpful. There is a TON of info on this board!! Just ask!

Good luck!

[Texasmommy]

Hi and welcome. I also have severe endo and was also diagnosed with adeno this past summer. I was able to get pregnant and deliver twins when I had only the severe endo. My doc thinks I got the adeno while pregnant. I have spent the last two years going through prep cycles for FET. We kept canceling the cycles due to fluid in my uterus caused by the adeno. Did 6 months of depot lupron and was finally able to do a FET with no fluid present. However, I didn't get pregnant. Now I'm starting prep for IVF. I would also love to hear from none else with these diagnoses.

[missjay]

i have sever endo. i was interested to know what protocol, supplements helped you ladies to have a successful pregnancy. I will start another ivf cycle and any advice, recommendations is greatly appreciated. Also, which clinic are you affiliated with.

[G&PMom]

Hi Miss Jay. I have to admit, my memories of my IVF cycle (at least my protocol specifically) are a little muddled since I did my IVF in 2008. However, I'll try and give a brief summary:

Sept 2008: Run through testing to start IVF cycle, HSG clear with exception of small fibroid/scar from my myomectomy visible, my RE decides to not do a laprascopy to check for endo (removed in 2003, on lupron for year, low dose b/c for six months and then nothing but acupuncture, diet/yoga).

My meds were:
Lupron protocol, followed by Follistem (900 ml?), with Ovidrel trigger. Did metformin for a very brief time but they didn't think I needed it. Also took estradiol and progesterone in oil shots for fresh IVF.

My alternative medicine supplements: weekly acupuncture with fertility specialist in 2 months prior to cycle, increased to 2 x a week during IVF with 2 visits on transfer day (one before/one after). They gave me herbal supplements but I stopped before IVF.

Vitamins, etc: Omega 3 6 9 in liquid refrigerated form (1-2 tblspns daily), Rainbow Naturals prenatal, Royal Jelly (1 spoonful up to egg retrieval). No caffeine (not even chocolate) during entire IVF prep and transfer, no alcohol and tried to limit my carbs and eat healthy "fertility" foods like sweet potato, dark greens, brown rice.

I produced a lot of eggs for a 38 year old with severe endo that included exploded chocolate cysts removed in 2003. I had about 16-18 eggs, of which about 13-15 fertilized and they opted to go for a day 5 transfer given number of eggs developing. By day 5, I think I was down to 6-8 embryos...they implanted 2 best and let the rest go to day 6 when they froze only the best quality, which was 2.

I did pretty strict bed rest on my fresh IVF, as I mentioned, I did go to acupuncture before and after the transfer to encourage implantation.

In terms of what helped me, it was confidence in my RE, who had helped me so much in 2003 with removing my disease and was really the best at it because I don't think it must have been back at level it was because I did have a successful IVF. I had done acupuncture regularly for years after my myomectomy and while I had been stopping and starting with specialists in my new city prior to the IVF, I had a good solid 2 months with my reproductive acupuncturist prior to starting IVF, so that I felt was helpful to me in keeping me emotionally balanced and possibly physically more prepared for IVF and conception. I definitely think the acupuncture kept my endo and fibroids controlled from 2005 to 2007 because I haven't been going with 2 kids under 3 and I just found out that I probably have either a fibroid, adenomyosis, or some sort of mass back in my uterus area!

Because my endo was severe and I had had extensive myomectomy, my RE never felt like IUI was a good idea for me, she alway felt it would be a waste of resources and emotionally draining and wanted to go straight to IVF. I never questioned that option. She allowed me 2 tries with clomid and I hated it and while I progressed nicely with it (she monitored follicles), no pregnancy. I think severe endo can really do something to hinder implantation and even REs don't really understand what it is, but if they can "level the playing field" as my doctor said, they can create the best situation for success.

My IVF was so successful and my body so good that I started out with twins, which was a joy until we realized that one of those embryos was having severe defects as it developed and with devastation, we lost a baby at 15 weeks. I still wonder why it had to happen, we wanted them both so badly, but in some ways, my body was overly helpful and an embryo that shouldn't have made it was somehow still developing. Anyways, I don't say that to be discouraging, what happened to me is astronomically rare (not even a trisomy or anything that amnio revealed) according to my perinatologist and the majority of IVF ladies can carry twins all the way to delivery. Anyways, our other embryo was strong and kept growing and we were blessed with little boy.

So I had a lot of strikes against me when I started IVF (severe endo, scarring from myomectomy, age) and still found success to be surprising...my husband and I were in shock, we fully expected our first IVF to be a "test run" to figure out what we needed next IVF when we got our BFN. The same thing happened with my FET, we fully expected that not to work, given the low success rates for my age group (20%). But I did acupuncture and same vitamins (no royal jelly since eggs were not an issue), I did actually drink a little caffeine and alcohol this time in preparation since once again, developing eggs were not an issue with a frozen cycle...and still had success.

I hope this helps! My clinic was Texas Fertility Center in Austin, Texas and I was with a doctor that I selected back in 2003 purely by chance, who had the most experience with endo/fibroids so that worked out well for us!

Two factors I think are very important are being comfortable with your clinic/RE/staff and trusting them, as well as finding a way to stay relaxed, happy or at least distracted from whole process. Acupuncture helped me that way and made me feel I was doing something actively to help the process along. As a sort of scientist in real life, I really enjoyed having the structure of the process, someone on these boards pointed out how they just looked at the whole cycle as "day by day" on calendar...that is exactly how I tackled it.

In fact, the other day I was at my ob/gyn and had to get blood draw and got nervous...I chuckled remembering the days when I went every morning to lab for blood draws so that the plebotomists actually recognized me at the busy testing lab where I had to go! lol!

Good luck, please pm or ask any other questions. I wish I had more answers on adenomyosis, I kinda wonder if I'm suffering from that now, will find out in ultrasound in a week!

[G&PMom]

I should add, my fresh IVF cycle, once I got positive beta, my levels were high enough that they stopped the progesterone shots and I had stopped estradiol even sooner.

My FET, I was on progesterone suppositories and stayed on those for 12 weeks since my betas were slowly rising due to frozen embryo taking its time implanting....lol...at least it was the suppositories and not the shots...but oh man, they were messy and gross!

[missjay]

wow G&PMom.. awesome..

i am doing acupuncture, taking royal jelly, pre-natal vitamins, CoQ10, dhea, and noni juice.. i need to eat better though.. last year i did so well, this year it seems so hard to do... since this is the kick off for lent, gives me a reason to refrain from eating bad and thinking bad.. i plan to juice since i have some downtime b4 i actually start the process.
thanks again for all ur insights

[Texasmommy]

Originally Posted by missjay

i have sever endo. i was interested to know what protocol, supplements helped you ladies to have a successful pregnancy. I will start another ivf cycle and any advice, recommendations is greatly appreciated. Also, which clinic are you affiliated with.

Hi miss jay
My treatment before IVF was pretty extreme due to the severity of my endo. I couldn't do any hormone stimulation without it interfering. So I had a laparoscopic surgery to clean up the endo followed by 6 months of depot lupron (pseudo menopause) and then another laparoscopy. Then I started meds like everyone else: follistim, estrace, gonal f, progesterone. I had a successful IVF that resulted in twins. Prenatal vitamins, fruits and vegetables, no caffeine, plenty of sleep, and minimize stress. Good luck!

[Lizclomid]

This is most encouraging news! I have had egg quality and reserve tests-all good and no problems with my husbands sperm. Just waiting for my consultation on the fourth of April.
Thank you.

[Lizclomid]

May I ask how long after surgery you had IVF? My womb needs serious restoration work-if it was a building it would be pulled down! I have seen 3 different doctors and each one has a different idea as to whether I have a fibroid or something else! I am convinced it's an adeno cyst as I had one removed three years ago and it took eight hours to remove it piece by piece-it was the size of a large grapefruit!

[G&PMom]

I had my IVF many years after my surgery!!! It took me a while to find mr. right since I was single when I first found out about my severe endo and fibroids due to pain and bleeding. When we were preparing for IVF in 2008, my RE did an HSG and warned me she might want to do another laprascopy to clean me up prior to IVF but based on results of HSG, she was ok and we moved forward because more surgery=more scarring which also can be a bad thing for implantation.


There is someone else on here that just had an adeno mass removed and I believe she is going on Lupron for a while to suppress the endo (because adeno is endo, but just in muscle) and then she will move onto IVF 3 months later....but I'm not sure if that is 3 months after 6 months of Lupron or what.

I do know that if you have surgery, you will at least need a few months to recover but if you have adeno and endo, it is important to start as soon as possible to avoid anything coming back.

i just found out my ultrasound showed a hydrosalpinx and a couple of small fibroids. So I'm probably having surgery to remvoe the tube for hydrosalpinx and then check for endo (my guess is that it is there again in full force)...the fibroids they will leave alone. I'm not really planning anymore children at 41 and if I do, I probably would adopt and/or use donor eggs with IVF so doing the surgery for me is mainly for pain I'm experiencing right now.

I should just tell you that do not worry about extent of the surgery or size of your mass. I had a fibroid the size of a grapefruit along with 9 smaller ones and my uterus was much smaller than when my RE began my surgery but she said it would be enough. And it sure has been, it made it through 2 pregnancies.

So if you need surgery, just go for it. You will want to make sure that you have the best environment for your embryos and I know women who have lost babies due to fibroids in bad places (and plenty of women do have fibroids during pregnancy, I did, but they weren't in places that impacted baby). I think you are doing right thing by seeing adeno fertility specialist, I only just recently heard about this endo related condition and it sounds more challenging but also not impossible to deal with.

Good luck!