End of my rope and need advice (high FSH and endo)

End of my rope and need advice (high FSH and endo)

Joined: May 18th, 2011, 1:17 pm

May 18th, 2011, 1:26 pm #1

Long time lurker, first time poster because I need your advice...

I'm turning 31 next month and have been diagnosed with high FSH (highest 15) and stage IV endo (adhesions, lesions, chocolate cysts, the whole gamut). We've been TTC for 4 1/2 years and I'm at the end of my rope. I have had two laparoscopies in the last three years and have never been pregnant.

We had a failed IVF cycle (suprefact microdose flare, stimmed 16 days 300 Gonal-F/150 Menupur, for four follies all on one ovary, one egg retrieved, one 8-cell 3DT) in February.

As next steps, my RE is recommending another laparoscopy to clean up my endo again (my left ovary is adhered and my uterus is retroverted again already after last year's surgery) so he thinks the aggressive nature of my stage IV is affecting my ovarian function. After the laparoscopy, he wants to put me on Lupron Depot for 3-4 months before trying IVF again.

I am terrified of being over-suppressed and I told him that. He said my ovaries won't work properly with all of the endo/adhesions in my pelvis and either way, we're gambling. I have a lot of pain mid-cycle and around my period, so the Lupron Depot should alleviate my pain and let my ovaries have a chance to heal without dealing with the endo.

Does this sound like a good plan or am I right to be worried about over-suppression?

Also, our last cycle cost us $17,000 out-of-pocket, this is the only clinic in town, and this is our last kick at having biological children. Those factors are also weighing on my mind.

Advice, opinions, anything welcome! TIA!
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maureen
maureen

May 18th, 2011, 1:58 pm #2

Hi JLa10,

Endo is difficult. Some RE's believe that laps do more damage than good. Some RE's believe that ivf is the work around.

Can you try for a second opinion before doing the lap? Even if you won't do treatment with that RE, I'd like to see what other docs think you should do about your aggressive endo before you get cut again.

GL!
Maureen
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Jamie
Jamie

May 18th, 2011, 2:40 pm #3

Long time lurker, first time poster because I need your advice...

I'm turning 31 next month and have been diagnosed with high FSH (highest 15) and stage IV endo (adhesions, lesions, chocolate cysts, the whole gamut). We've been TTC for 4 1/2 years and I'm at the end of my rope. I have had two laparoscopies in the last three years and have never been pregnant.

We had a failed IVF cycle (suprefact microdose flare, stimmed 16 days 300 Gonal-F/150 Menupur, for four follies all on one ovary, one egg retrieved, one 8-cell 3DT) in February.

As next steps, my RE is recommending another laparoscopy to clean up my endo again (my left ovary is adhered and my uterus is retroverted again already after last year's surgery) so he thinks the aggressive nature of my stage IV is affecting my ovarian function. After the laparoscopy, he wants to put me on Lupron Depot for 3-4 months before trying IVF again.

I am terrified of being over-suppressed and I told him that. He said my ovaries won't work properly with all of the endo/adhesions in my pelvis and either way, we're gambling. I have a lot of pain mid-cycle and around my period, so the Lupron Depot should alleviate my pain and let my ovaries have a chance to heal without dealing with the endo.

Does this sound like a good plan or am I right to be worried about over-suppression?

Also, our last cycle cost us $17,000 out-of-pocket, this is the only clinic in town, and this is our last kick at having biological children. Those factors are also weighing on my mind.

Advice, opinions, anything welcome! TIA!
I would definitely get a second opinion. I'm concerned that you had four follicles and only got one egg. That sure sounds like oversuppression to me, and so many of us have had bad experiences with lupron that I'm always skeptical of a lupron (suprefact) protocol. That you had to stim for sixteen days confirms my belief that you were oversuppressed; my clinic says that ideally a person stims for ten to twelve days.

Can you travel at all or do you have to work with this clinic? Even if you have to work with them, maybe you could do some phone consults with other good clinics and get more information. I would highly recommend my own doctor, Dr. Jimmy Gill of Houston Fertility Institute, for a phone consult. It is only $50 and Dr. Gill was by far the best RE of the four I worked with in four states. He finally got me success with my own eggs at age 39 after I had been told DE by two other REs. Maybe some other ladies will chime in here too with recommendations.

I would not spend any more money until you have done a lot of research. At 31, you have the luxury of time to weigh your options. Good luck!
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Joined: May 18th, 2011, 1:17 pm

May 18th, 2011, 2:51 pm #4

Unfortunately, this is my second opinion, at the same clinic. We can't afford to travel - the closest clinic is 12 hours away - and I'm stuck with what this clinic provides.

Phone consults may be a good idea in lieu of being able to take my business elsewhere.
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Jamie
Jamie

May 18th, 2011, 3:01 pm #5

Even if you can't go anywhere else for treatment, at least this will educate you on some other things to think about, and then you can collaborate with your RE rather than just be told what to do.

If I were you, I'd probably also consider insisting on an antagonist protocol for your next IVF; 16 days of stims and 1 egg retrieved from four follicles is classic oversuppression. Lupron (suprefact) is truly awful for many of us high FSH types. You may do a lot better on antagonist.

Good luck!
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MargieD
MargieD

May 18th, 2011, 3:21 pm #6

Long time lurker, first time poster because I need your advice...

I'm turning 31 next month and have been diagnosed with high FSH (highest 15) and stage IV endo (adhesions, lesions, chocolate cysts, the whole gamut). We've been TTC for 4 1/2 years and I'm at the end of my rope. I have had two laparoscopies in the last three years and have never been pregnant.

We had a failed IVF cycle (suprefact microdose flare, stimmed 16 days 300 Gonal-F/150 Menupur, for four follies all on one ovary, one egg retrieved, one 8-cell 3DT) in February.

As next steps, my RE is recommending another laparoscopy to clean up my endo again (my left ovary is adhered and my uterus is retroverted again already after last year's surgery) so he thinks the aggressive nature of my stage IV is affecting my ovarian function. After the laparoscopy, he wants to put me on Lupron Depot for 3-4 months before trying IVF again.

I am terrified of being over-suppressed and I told him that. He said my ovaries won't work properly with all of the endo/adhesions in my pelvis and either way, we're gambling. I have a lot of pain mid-cycle and around my period, so the Lupron Depot should alleviate my pain and let my ovaries have a chance to heal without dealing with the endo.

Does this sound like a good plan or am I right to be worried about over-suppression?

Also, our last cycle cost us $17,000 out-of-pocket, this is the only clinic in town, and this is our last kick at having biological children. Those factors are also weighing on my mind.

Advice, opinions, anything welcome! TIA!
I have endo as well.

I have read some research that taking IF meds can cause or inflame endo if you've have it. Sixteen days of 300 Gonal-f / 150 Menopur is an awfully lot of meds.

The thing that concerns me is that your RE retrieved only one egg. In a natural unmedicated cycle, women produce only ONE (and sometimes two) eggs out of so many follicles. I agree with Jamie that you might be oversuppressed. I, too, tried the MDL protocol and responded very poorly on it. I started on the antagnost protocol and did better on it, but had to stop because they found a blocked tube.

Have you ever been monitored naturally/unmedicated? Do you know if you produce a mature egg and release? (My endo does not allow my follicles to release and I have a blocked tube as well - probably from the endo.)

I would definitely seek out other opinions if possible. (I have three REs within an hour or two of me, but I work with an RE 8 hours away!) If anything, I would see another opinion on the endo as well. You might be able to find someone who can work with you cheaper and you can use the rest of the intended money for traveling.
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Joined: May 18th, 2011, 1:17 pm

May 18th, 2011, 3:44 pm #7

I had many monitored cycles prior to the IVF (and then did 2 Femara IUIs in 2010) and always produced one or two follicles, but I'm a slow, slow grower and we don't know if there are actual eggs releasing or if the follicles are just rupturing. The RE also mentioned "Empty Follicle Syndrome," which I know nothing about, because I don't have enough on my plate.

The IVF was my first time on injectibles and I think the massive dosage + BCP + Suprefact was too much for my body. I don't know if Lupron is the answer, but I know the endo is incredibly aggressive and I would't want to get cleaned up just to have it all grow back again. My left ovary was inaccessible for the egg retrevial just five months after my last laparoscopy.

I really wish babies or money grew on trees.
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MargieD
MargieD

May 18th, 2011, 3:51 pm #8

Do you know what were your E2 levels in those natural, Femara, and especially this IVF cycle?

Maybe you could call the nurse and ask? If you can, get your P4, LH, and FSH numbers as well.

Did your RE do the laparoscopy? Do you know why your left ovary has been inaccessible? Is there someone else you can consult on the endo?

I would definitely ASK lots of questions! I am sorry that you're going through this.
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Joined: May 18th, 2011, 1:17 pm

May 18th, 2011, 4:01 pm #9

My FSH in November, before starting BCP, was 15.1 and my E2 was 86. My E2 levels rose slowly during the cycle.

My RE did the lap and says he thinks the ovary was inaccessible because it's adhered to something it shouldn't be. He's worried about twisting (and so am I)!

I've seen 2 REs at this clinic and they're the only game in town when it comes to endo as well. Nothing like living in the middle of nowhere!
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MargieD
MargieD

May 18th, 2011, 4:56 pm #10

Might be helpful if you called your RE and asked what the E2 was before retrieval (as well as before the IUI and the natural cycles). It might give you a better picture of where your cycles are and how they respond to meds.

When I went through my first IVF - I was incredibly naive. So many things I wished I learned and asked back then!! Now - I suffer from information overload!! But if I'm going to spend my hard earned dollars - I'd rather have too much information than not enough!

Good luck!
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