No endometriosis pain on Letrozole

Happy new year everyone!

It’s been quite a long time so I thought I will give you an update.

As you know, I am trying to conceive. I live in the UK and am seeing a consultant fertility specialist in hospital on the NHS (national health service). I started asking for a referral from my GP end of january 2015 and finally finished all the tests end of october 2015, so started a 3 months course of fertility treatment end of november 2015.

The tests and results were:

  • Day 2-5 LH: 6
  • Day 2-5 FSH: 6.9
  • Day 3 Estradiol: 2.29
  • Day 21 Progesterone: 22, this is low as anything under 30 means that ovulation has not occured that month
  • Hycosy: right ovary is big, right tube is blocked, there is visible adenomyosis. This test was very painful.
  • AMH: 2.5 (this was done privately for £86 as you cannot get it on the NHS). This is low as the normal range for someone my age is between 0.3 – 14.7.

So, my main problems are: a low ovarian reserve (low AMH), old eggs, I do not ovulate every month, my right tube is blocked and we also have some male issues (low count and low motility). Oh, and let’s not forget that I have severe endometriosis (diagnosed as stage 3 14 years ago but could well be stage 4 by now).

Afert seeing all the results, my consultant said that I should go straight to IVF ICSI with donor eggs as that will give me a 35 to 40% chance of success. That costs about £10.000 in UK, which I do not have at the moment and I do not qualify for a free IVF on the NHS. He said that he does not recommend fertility pills (ovulation inductors such as clomid) as he thinks that it is not going to work for me, however he said that it is better than doing nothing.

So while I wait to be able to pay for IVF, he gave me a 3 months prescription of:

  • Clomid 50mg and letrozole 2.5mg, taken on cycle day 2 to 6
  • Progesterone pessaries 200mg from cycle day 10 to 22 (progesterone must be taken after ovulation as it may suppress ovulation if taken before ovulation)

I specifically requested some Femara but he said that you cannot get it on the NHS and that if I want it I have to go to a private clinic. After insisting how clomid aggravates my endometriosis pain and how femara is the recommended fertility pill for people who have endometriosis, he finally gave me Letrozole (Letrozole is the generic name for Femara).

I do not like taking clomid as the last time I took it (last march I think), I had horrible endometriosis pain while on it and afterward. But I wanted to give it another try so the 1st month, I dutifully took it as prescribed with the letrozole.

So, 1st cycle:

  • Clomid 50mg and letrozole 2.5mg, cycle day 2 to 6 (I take the clomid in the morning and the letrozole at night before going to bed)
  • Side effects: hot flashes, lack of cervical mucus so I used a Conceive Plus Fertility Lubricant before baby making time, my next period only lasted for a day which is a sign that the clomid thinned the lining of my uterus (which is bad as a uterus with a thin linning cannot support a pregnancy)
  • Result: I did an ovulation urine test every day from day 6 after the last clomid/letrozole pills till my period arrived, and it was negative all the time so I do not think I have ovulated that month. Also, my cycle only lasted 26 days that month.

The most important thing is that I have not had any endometriosis pain since taking the letrozole. No period pain either. No pain during the whole month. 

I stopped taking systemic enzymes (nattokinase, serrapeptase, wobenzym N) just before starting this fertility treatment. I am still debating whether I shall take some (at a reduced dose) in order to help any leftover endometriosis lesions inside my body.

There are several medical studies that show that Letrozole is effective in treating endometriosis pain. This one (for women not trying to conceive) concluded that a dosage of letrozole 2.5 mg in addition to elemental calcium 1000 mg and vitamin D 880 IU daily for a total treatment duration of 6 months, resulted in substantial improvement of pain with no recurrence of pain for 6 months after completion of treatment. If you are trying to conceive, then you take Letrozole for only 5 days a month (dosage varies from 2.5mg to 12.5mg a day).

Letrozole is an aromatase inhibitor.

How it works

  • Aromatase is a protein in the body that is responsible for producing oestrogen. Normally, it is found in the ovaries, and to a much lesser extent in the skin and fat.
  • Research has shown that aromatase is also found in high levels in the ectopic endometrial tissue of women with endometriosis, which contributes to the growth of their endometriosis.
  • Further research, has shown that inhibiting the aromatase by giving women an aromatase inhibitor suppresses the growth of their endometriosis, and reduces the associated inflammation. This, in turn, significantly reduces their pelvic pain.

Next time, I will write about new supplements I am taking to help with the low ovarian reserve.

Have you tried Letrozole as an ovulation inductor or as a treatement for endometriosis? Please share your story.

 

 

Advertisements

9 thoughts on “No endometriosis pain on Letrozole

  1. Hey,
    Your ovarian reserve seems to be fine. The norm is 1.0–3.0 ng/ml. If you are above 3.0 it may mean that you have PCOS.
    Do you have regular ultrasound to check if your eggs are growing? They could also give you a pill or injection to help you release the egg (at the right time of course).

    Like

    • Hi Agnieszka,
      I am in UK and the norm for ovarian reserve (AMH) is different I think in other countries. My result is on the lower end for my age (the lab and 2 gyneocologists confirmed it). I have not been tested for PCOS, I only have one of its symptoms (irregular ovulation) so I am taking myo-inositol just in case (some studies have also shown that it may be good for egg health). I don’t have ultrasound follow up or injections to release the egg as at this time as they are not worth doing in my case at this time (endo cells kill the eggs – I will write more about this another time). The clomid and letrozole therapy I am doing is theorically not worth doing either at this time, however I am continuing with the letrozole as it helps my endometriosis.

      Like

  2. To be honest with you, if your ovarian reserve is low, you shouldn’t do stimulation, especially without helping your eggs release. You are just making your eggs grow (you use them), but according to your LH test results, they are not released. So it’s just unnecessary lost. Regardless of the ovarian antibodies, you are referring to (“endo cells kill the eggs”). I’d suggest finding a good doctor who would do regular ultrasound and give you injection to release the egg when it’s around 18mm. Take care!

    Like

    • Thanks Agnieska and sorry for the late reply. Yes, you are right, I have been told by my current doctor that there is no point in taking fertility drugs as he thinks it is not going to work. He told me to go straight to IVF ICSI with donated eggs, but I am not financially ready for that so instead of doing nothing in the meantime, I wanted to try fertility drugs (without the injections as he thinks this is also not going to work for me).

      Like

  3. Hi,

    Are you taking Letrozole to control endo or to get pregnant? Thanks for sharing your experience. WHat is your status at the moment, it it helping? Please let me know what supplements are you having for egg reserve. I am in desperate situation with endo etc.

    Like

    • Hi Sz, thanks for your comment. I am taking letrozole to get pregnant, however I found out that it also helps with endo so you could say that I then take it for both. Letrozole helps with my endo pain. I am not pregnant yet. For egg reserve, I used to take ubiquinol 300mg a day and DHEA 75mg a day but now only take the DHEA. I will give a quick update on my blog today.

      Like

  4. Hello,

    I would really like to try Letrozole to treat stage 4 endometriosis. I know it has been successful in other countries. My GP and gynaecologist explained that they are not allowed to prescribe Letrozole for endometriosis in the uk. I would really like to try it but can’t get a prescription. Do you know how I can get Letrozole here?

    Many thanks

    Like

    • Hi, Yes some doctors in UK are not keen to prescribe letrozole for endometriosis. I do not believe it when some doctors say that they are not allowed to prescribe it for endometriosis, as the consultant at my local nhs hospital said that they do offer a letrozole treatement for endometriosis (although she said that it is not the 1st treatment offered). You need a prescription for it so my advice would be to see a private doctor who is willing to give you a prescription (in my experience it helps to bring along a copy of medical studies about letrozole being an effective treatement for endometriosis, you can find those studies by googling it and print it out).

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s