Sunday, August 28, 2011

My OHSS - Mismanaged or "Normal"?

image from google images
During my OHSS ordeal, I spent the half the time I was calling out for help be told that this--all my symptoms, pain, weight gain--was "normal".  After five days, when I actually received an ultrasound, the entire office was spun into a frenzy.  Obviously, this was not normal.  But I still question whether this was a result of gross mismanagement or if this was a normal protocol that my body just decided to rebel  against severely.

Here are my numbers from the days I was monitored.  Any input on what you think may have happened would be very, very helpful.  This being our first injectable cycle and the response being so severe, we are not only new to this and the relative norm of such data but also worried about going forward.  After my liver enzymes were off, I also wonder if this is linked to the Metformin or OHSS.  Info you have on Metformin and if you get regular liver tests while on the drug would be helpful as well.  Thank you for all your input that will help us find our way!

Patient History:
PCOS
 Meds: Metformin, basic fasting glucose test prior, no other test before or during
1 cycle on 50 mg Clomid -- no response, cycle canceled
1 cycle on 100mg Clomid -- no response, cycle canceled

This cycle:
Day 1 baseline ultrasound - quiet ovaries, cleared to begin
Clomid 100mg days 3-7
6 Gonal-F shots 150 iu days 8-13
Ovidrel Trigger day 14
IUI day 16 


Monitored Appointment Data
Friday:
Right ovary follies:  14.5mm, 14mm, 12mm, 9mm
Left ovary follies:  2@13mm, 8mm
many smaller
E2:  824.6
  
Monday:
Right ovary follies:  18mm, 14mm, 2@11mm, 10mm, 9mm
Left ovary follies:  2@17mm, 14mm, 13mm, 11mm
many smaller
E2:  3621
                                                                                                                                                                 
Tuesday:
Right ovary follies:  20.5mm, 2@15mm, 2@14mm, 2@12mm
Left ovary follies:  18mm, 17.5mm, 2@15mm, 13.5mm
many smalller
E2:  3343
Trigger shot


Thursday:
IUI
40-60 forward moving/hpf

I am fairly blown away by some of these numbers, specifically the E2 jump by Monday.  Even more so when I read that normal E2 during the ovulatory phase is less than 500!  But, all in all, I am not an expert in fertility medicine.  I don't know the norm.  I don't know what data should really look like or what red flags would constitute the immediate canceling of a cycle.  I just know my gut feeling--that this wasn't right.  

Thanks for any and all input.  Every little bit will help us figure out where to go from here!



9 comments:

Sybil said...

Hi! Thanks for leaving a comment on my blog! In theory you are correct, simply skipping the hcg shot should work...however, we PCOS people seem to have multiple issues, included nudging the little eggs out of the nest. You can always give it a try!

My opinion is that your case was grossly mismanaged. Your stats look more like mine from an IVF cycle. The Hcg trigger gives the eggs a little boost in growth and pushes them out. Any over 14mm at the time of trigger have the possibility of having a mature egg in them...and thus the possibility of fertilizing. You had the chance of becoming pregnant with 9 babies. My clinic will not go forward with an IUI cycle (and encourage you to avoid intercourse) if there are over 5 possible mature eggs (they aim for 2-3 mature eggs). With PCOS you have to go very slowly with the meds...starting out at 50iu or less and drawing it out for more days. It is incredibly hard to hear that a cycle needs to be cancelled but you have to consider the heath risks. After my mismanaged cycle, I found a new RE....a clinic that specializes in PCOS. I would not go back to this clinic.

Anonymous said...

I had 3 injectible cycles. The third one (which worked), I had my highest E2 results. It was 960. I had 2 to 3 follicles at or above 16mm (which is the number they considered to be mature enough to trigger since the follicles will mature further over the next 48 hours). I also did not take clomid during my injectible cycles. They kept me on Follistim 50-75IU for 7 to 12 days depending on the cycle. They said they like to keep it "low and slow". Maybe they should have instructed you on Friday to give yourself one more shot that night and then trigger Saturday night for a Monday morning IUI. I just wanted to give you my stats so you could compare.
I'm sorry that you had to go through all of that. It sounds absolutely awful.
Good Luck,
Chloe

infertile days said...

I do not have PCOS and cannot comment on the meds as I have never taken those specific ones before, but I was surprised to see how many follicles you had. When I do an IUI cycle, I have 1-2 follicles that are mature, and sometimes maybe a smaller one that never will catch up. Not saying that's the 'correct' number but that seems like a lot. I would definitely investigate this thoroughly, and consider another clinic.

Liz said...

I also have PCOS and did one injectable IUI cycle. My estradiol levels at the highest were in the 400 range. I took 75 iu's of Gonal-F for about 5 days and they finally upped it to 112.5 at the highest. I'm not sure why they did the Clomid the same cycle for you. The estradiol being at 800 for your first appointment sounds scary to me. I can't believe they triggered you for an IUI cycle without even having a discussion about OHSS. I got lectured multiple times and the decision to trigger or not was up to me for my IVF cycle.

For my IVF cycle i was told anything about 3000 for estradiol and your risk for OHSS is VERY high. Mine was at 2750 at the time of trigger and although I had free fluid in my abdomen, I did not get OHSS.

I would not return to this clinic since they didn't take your complains seriously and they put you at risk. Did you they talked about the added risk of pregnancy with you at all during this process?

I definitely think you can learn something about this ordeal. You should ask about your estradiol levels during a cycle and ask to personally talk to your RE if you suspect a problem. I don't think you would allow this to happen to your again.

browning2222 said...

I just found your blog and read several of your posts to catch myself up, and I can not believe that you were so mismanaged.
I know that I was uncomfortable with how many follicles I had for my IVF cycle but nothing even close to what your ovaries were like. It was drilled into my head that I had to check my weight twice a day to make sure I did not gain more than 5 lbs within the cycle. I'm still learning about this whole process even though I have been at it for over 3 years and I honestly have never heard of a story like yours. I'm glad that you told your story to educate others.

CG said...

I am positive that the whole thing was mismanaged. Combination cycles (Clomid+Injectables) are risky where they grow slowly in the beginning and suddenly shoot up. I just had a cancelled cycle because of overstimulation. I did not have symptoms as bad as you. Mine were just stomach pain and bloating and my clinic did not go ahead with the IUI because they saw 5 mature follicles and maybe 2 more before the IUI. From your data I think they could have easily stopped the meds on Monday when you had 3 mature follies. From both your experience and mine what I feel is we need to be more pro-active in our treatments. Good luck with the recovery.

angryuterus said...

Wow! I don't know anything about this topic, but I'm sorry you had to go through it. It sounded physically and emotionally painful!

Thank-you for your comment on my blog. I hope you get your BFP soon.

I Believe in Miracles said...

Your E2 numbers definitely seem more IVF cycle than IUI. I had OHSS with my first IVF cycle. My E2 shot up similar to yours. It was 1200 one day and 3200 the next. One thing about these drugs, you never know how you are going to react.

I did the IVF retrieval, but did not transfer. I ended up with mild - nothing like yours - OHSS two days post retrieval. I subsequently met two ladies who had a similar retrieval/OHSS to mine, except they both ended up in the hospital, having fluid sucked out of their lungs.

I would agree with other commenters that you might want to consider another clinic or sit down with your doctor and have a serious discussion about mismanagement of meds/your complaints not taken seriously.

You had asked about going forward for LFCA. I ended up having a FET and that went fine and we have a healthy girl. I did a second IVF recently and my protocol was different and they also managed me a lot more carefully. Instead of every-other day check ins, I had to come in for blood and ultrasounds 7-8 days in a row before the retrieval. I was annoyed, but grateful for all the monitoring. I did not get OHSS the second time.

Good luck!

bean dreams said...

Thanks you so much to all who posted! It really helps to read through other stories and test results in order to understand what really happened. I cannot even dream about going back to my fertility nurse, but we're still working through where to go from here. Thanks again! All stories and input (and any more that come) have helped us immensely!

Sunday, August 28, 2011

My OHSS - Mismanaged or "Normal"?

image from google images
During my OHSS ordeal, I spent the half the time I was calling out for help be told that this--all my symptoms, pain, weight gain--was "normal".  After five days, when I actually received an ultrasound, the entire office was spun into a frenzy.  Obviously, this was not normal.  But I still question whether this was a result of gross mismanagement or if this was a normal protocol that my body just decided to rebel  against severely.

Here are my numbers from the days I was monitored.  Any input on what you think may have happened would be very, very helpful.  This being our first injectable cycle and the response being so severe, we are not only new to this and the relative norm of such data but also worried about going forward.  After my liver enzymes were off, I also wonder if this is linked to the Metformin or OHSS.  Info you have on Metformin and if you get regular liver tests while on the drug would be helpful as well.  Thank you for all your input that will help us find our way!

Patient History:
PCOS
 Meds: Metformin, basic fasting glucose test prior, no other test before or during
1 cycle on 50 mg Clomid -- no response, cycle canceled
1 cycle on 100mg Clomid -- no response, cycle canceled

This cycle:
Day 1 baseline ultrasound - quiet ovaries, cleared to begin
Clomid 100mg days 3-7
6 Gonal-F shots 150 iu days 8-13
Ovidrel Trigger day 14
IUI day 16 


Monitored Appointment Data
Friday:
Right ovary follies:  14.5mm, 14mm, 12mm, 9mm
Left ovary follies:  2@13mm, 8mm
many smaller
E2:  824.6
  
Monday:
Right ovary follies:  18mm, 14mm, 2@11mm, 10mm, 9mm
Left ovary follies:  2@17mm, 14mm, 13mm, 11mm
many smaller
E2:  3621
                                                                                                                                                                 
Tuesday:
Right ovary follies:  20.5mm, 2@15mm, 2@14mm, 2@12mm
Left ovary follies:  18mm, 17.5mm, 2@15mm, 13.5mm
many smalller
E2:  3343
Trigger shot


Thursday:
IUI
40-60 forward moving/hpf

I am fairly blown away by some of these numbers, specifically the E2 jump by Monday.  Even more so when I read that normal E2 during the ovulatory phase is less than 500!  But, all in all, I am not an expert in fertility medicine.  I don't know the norm.  I don't know what data should really look like or what red flags would constitute the immediate canceling of a cycle.  I just know my gut feeling--that this wasn't right.  

Thanks for any and all input.  Every little bit will help us figure out where to go from here!



9 comments:

Sybil said...

Hi! Thanks for leaving a comment on my blog! In theory you are correct, simply skipping the hcg shot should work...however, we PCOS people seem to have multiple issues, included nudging the little eggs out of the nest. You can always give it a try!

My opinion is that your case was grossly mismanaged. Your stats look more like mine from an IVF cycle. The Hcg trigger gives the eggs a little boost in growth and pushes them out. Any over 14mm at the time of trigger have the possibility of having a mature egg in them...and thus the possibility of fertilizing. You had the chance of becoming pregnant with 9 babies. My clinic will not go forward with an IUI cycle (and encourage you to avoid intercourse) if there are over 5 possible mature eggs (they aim for 2-3 mature eggs). With PCOS you have to go very slowly with the meds...starting out at 50iu or less and drawing it out for more days. It is incredibly hard to hear that a cycle needs to be cancelled but you have to consider the heath risks. After my mismanaged cycle, I found a new RE....a clinic that specializes in PCOS. I would not go back to this clinic.

Anonymous said...

I had 3 injectible cycles. The third one (which worked), I had my highest E2 results. It was 960. I had 2 to 3 follicles at or above 16mm (which is the number they considered to be mature enough to trigger since the follicles will mature further over the next 48 hours). I also did not take clomid during my injectible cycles. They kept me on Follistim 50-75IU for 7 to 12 days depending on the cycle. They said they like to keep it "low and slow". Maybe they should have instructed you on Friday to give yourself one more shot that night and then trigger Saturday night for a Monday morning IUI. I just wanted to give you my stats so you could compare.
I'm sorry that you had to go through all of that. It sounds absolutely awful.
Good Luck,
Chloe

infertile days said...

I do not have PCOS and cannot comment on the meds as I have never taken those specific ones before, but I was surprised to see how many follicles you had. When I do an IUI cycle, I have 1-2 follicles that are mature, and sometimes maybe a smaller one that never will catch up. Not saying that's the 'correct' number but that seems like a lot. I would definitely investigate this thoroughly, and consider another clinic.

Liz said...

I also have PCOS and did one injectable IUI cycle. My estradiol levels at the highest were in the 400 range. I took 75 iu's of Gonal-F for about 5 days and they finally upped it to 112.5 at the highest. I'm not sure why they did the Clomid the same cycle for you. The estradiol being at 800 for your first appointment sounds scary to me. I can't believe they triggered you for an IUI cycle without even having a discussion about OHSS. I got lectured multiple times and the decision to trigger or not was up to me for my IVF cycle.

For my IVF cycle i was told anything about 3000 for estradiol and your risk for OHSS is VERY high. Mine was at 2750 at the time of trigger and although I had free fluid in my abdomen, I did not get OHSS.

I would not return to this clinic since they didn't take your complains seriously and they put you at risk. Did you they talked about the added risk of pregnancy with you at all during this process?

I definitely think you can learn something about this ordeal. You should ask about your estradiol levels during a cycle and ask to personally talk to your RE if you suspect a problem. I don't think you would allow this to happen to your again.

browning2222 said...

I just found your blog and read several of your posts to catch myself up, and I can not believe that you were so mismanaged.
I know that I was uncomfortable with how many follicles I had for my IVF cycle but nothing even close to what your ovaries were like. It was drilled into my head that I had to check my weight twice a day to make sure I did not gain more than 5 lbs within the cycle. I'm still learning about this whole process even though I have been at it for over 3 years and I honestly have never heard of a story like yours. I'm glad that you told your story to educate others.

CG said...

I am positive that the whole thing was mismanaged. Combination cycles (Clomid+Injectables) are risky where they grow slowly in the beginning and suddenly shoot up. I just had a cancelled cycle because of overstimulation. I did not have symptoms as bad as you. Mine were just stomach pain and bloating and my clinic did not go ahead with the IUI because they saw 5 mature follicles and maybe 2 more before the IUI. From your data I think they could have easily stopped the meds on Monday when you had 3 mature follies. From both your experience and mine what I feel is we need to be more pro-active in our treatments. Good luck with the recovery.

angryuterus said...

Wow! I don't know anything about this topic, but I'm sorry you had to go through it. It sounded physically and emotionally painful!

Thank-you for your comment on my blog. I hope you get your BFP soon.

I Believe in Miracles said...

Your E2 numbers definitely seem more IVF cycle than IUI. I had OHSS with my first IVF cycle. My E2 shot up similar to yours. It was 1200 one day and 3200 the next. One thing about these drugs, you never know how you are going to react.

I did the IVF retrieval, but did not transfer. I ended up with mild - nothing like yours - OHSS two days post retrieval. I subsequently met two ladies who had a similar retrieval/OHSS to mine, except they both ended up in the hospital, having fluid sucked out of their lungs.

I would agree with other commenters that you might want to consider another clinic or sit down with your doctor and have a serious discussion about mismanagement of meds/your complaints not taken seriously.

You had asked about going forward for LFCA. I ended up having a FET and that went fine and we have a healthy girl. I did a second IVF recently and my protocol was different and they also managed me a lot more carefully. Instead of every-other day check ins, I had to come in for blood and ultrasounds 7-8 days in a row before the retrieval. I was annoyed, but grateful for all the monitoring. I did not get OHSS the second time.

Good luck!

bean dreams said...

Thanks you so much to all who posted! It really helps to read through other stories and test results in order to understand what really happened. I cannot even dream about going back to my fertility nurse, but we're still working through where to go from here. Thanks again! All stories and input (and any more that come) have helped us immensely!