Low Egg Reserve with Endometriosis

Hi everyone. I've just joined as I feel like I need support.

From the age of 17 I've suffered with terrible period pains. A doctor visit when I was 19 resulted in me going on the pill but nothing else. It wasn't until I wanted to start a family when I was 27 that I was finally diagnosed with endometriosis. Since then I've been on the pill again for a year and then my husband and I have been trying for 18 months with no luck. After we finally decided to go straight to IVF (due to cost as we are now living overseas and have to pay privately) my first day 2 bloods showed high FSH (level 14). So IVF was not recommended and I've been put back on the pill and I have to go back every month to have my bloods done until I have appropriate levels because the doctor things the cysts on my ovaries might be the cause.

I've been doing some reading and from what I can see there's nothing that's really going to change my FSH levels because I have endo. I was wondering if anyone had any experiences of IVF with high FSH that they could share. I want to be able to decide whether I should stay on the pill and hope it changes my hormones or if I should go ahead with the IVF knowing that the chances are so slim. Either way I could end up wasting time but I really have no idea what to do!!

2 Replies

  • Hi, FSH can fluctuate a little and 14 isn't that high, it's not ideal but people can become pregnant with higher FSH levels. How many times have you had it tested?

    Have you had surgery for your endometriosis, and what type of cysts do you have on your ovaries?

    What stage of endometriosis are you, this is very important? Stage of disease makes a big difference in determining IVF success, because it seems stage 1 and 2 sufferers have similar outcomes to those with tubal disease, but stage 3 & 4 success rates are indeed lower.



    There is evidence that good excision surgery prior to IVF may help IVF outcomes in women with endometriosis. So, have you had your endo excised? This would involved draining your ovarian cysts (but not a cystectomy because this can further damage ovarian reserve) and excising as much of the endo as possible. So what is your surgery status?


    Also, have you had your AMH tested? I would recommend this.

    But the main thing is, I think putting you on the pill is pointless at this stage. To me, it shows your consultant is time wasting and doesn't know how to treat you. There is some evidence, but it's not strong evidence, that a short course of a GNRH therapy can help reduce the activity of endo prior to IVF. However, the evidence is not conclusive and GNRH therapy (such as zoladex), say for 6 months, will only temporarily shrink your endo and may even have a long term impact on ovarian reserve. Despite this, there are some examples where 2 or 3 months of GNRH did help IVF outcomes. My consultant wants me to have 2 months of down regulation with GNRH prior to my starting IVF but I have refused. I may come to regret this but I am going to try the long protocol first. I have a low AMH so it's all risky and the endo has massively reduced my chances of success, but I have to try.

    This example on fertility friends is interesting reading and shows that there can be success against all the odds. This lady had 2 failures with short protocol and then a standard protocol, and did need GNRH therapy for a few months because her ovaries just kept producing cysts, rather than follicles.


    Your consultant should be making you aware of all these issues, and shouldn't really be wasting your time with the standard pill. To me, it sounds like you need a second opinion with a fertility clinic that also have experience of treating people with endometriosis. I'm at a clinic where they are both endo surgeons and fertility experts.

    Let me know a little more detail.. best wishes.

  • Wow YellowRose...that's so much information! You seem so much more informed on this than I am!! I'll try to answer all your questions (although I already agree with you that the doctor is just stalling!!).

    I've only had my FSH tested once, but not my AMH. The only reason my FSH was tested was because I was supposed to be starting IVF that day. I have requested hormone tests in the past but the doctor said he felt there was nothing wrong with my hormones so didn't carry out any tests.

    I haven't had any surgery for my endo. Although I've read a lot about surgery helping I haven't been sure about doing it in case my ovaries are damaged in the process. My endo has only been confirmed by internal ultrasound so I can only say that 2 or 3 chocolate cysts have been observed, only on my left ovary. I wasn't told a stage but from what I've read it must be an advanced stage before any cysts become visible on an ultrasound so I have presumed that I'm stage 3 or 4 (also because of not being diagnosed for 10 years so it's had plenty of time to progress).

    Unfortunately this consultant is my only option locally. I'm currently living overseas (my husband has a teaching post in Thailand) and without travelling to another city or country on a regular basis I don't have much option. I'm also not covered by any insurance because of it being considered as fertility treatment (the policy I'm under only covers up to diagnosis).

    The reason I agreed to go on the pill was that, due to time constraints on "day 2" on my part, my hormones were tested by the nurse at the hospital and the doctor then consulted me over the phone in the reception area of the clinic so I was keen to get it over with quickly as other people were there and I didn't have all the information about what high FSH meant. The doctor just told me that it was up to me to continue the IVF or not but that he felt the FSH level would mean I would have low success and that his recommendation was to go on the pill for 1 or 2 months to see if it helped. I had no reason to not believe him as I didn't know what the high FSH really meant and being on the pill previously had reduced my cysts significantly.

    With the information I know now, I would've continued with the IVF treatment anyway. And I've decided that in one month I am going to go back and start regardless of the FSH levels. I have read enough now to understand that it just means I will have lower egg harvest but I won't know about what else to look at treating until I have tried the IVF once to see what happens.

    Thank you for all your thoughts. I'm hoping this will only make me stronger and I'm just going to continue with what feels right (physically and emotionally).

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