Update

Thanks to those who sent me emails and left comments asking how I am doing.

I have now finished the 6 months fertility treatment and will have my last hopsital appointment next week. We only get 6 months fertility treatments on the NHS and if you want more you have to go private after that.

I am not pregnant, so the treatment did not work for me, but I am still glad that I went through it. The most positive thing that came out of it is that I discovered that Letrozole works for endometriosis pain. When I was treated for endometriosis in the past, no doctor suggested trying Letrozole, so this was an opportunity to try it for myself. There are still doctors who do no like prescribing it for fertility or for endometriosis as it was initially created as a breast cancer follow up treatment.

As, I was taking Letrozole for fertility, I started taking it for 5 days of the month (from cycle day 2 to day 6). After doing more research, I read about doctors prescribing it for 10 days for those who do not respond to just 5 days, so on the 6th month I took it for 10 days (from cycle day 2 to day 9).

For those who do not want to get pregnant and who just want to use it as an endo treatement, studies recommend taking it for the whole month. They also recommend taking elemental calcium 1000 mg and vitamin D 880 IU daily.

I did not get any side effect from it but some people do so it is worth being monitored by your doctor while taking it.

So what now? I still don’t have enough money to pay for the IVF ICSI with donated eggs. My parents have offered to help but I am afraid that it may not work and I am afraid of waisting their money for nothing. I have found 2 egg donors (family members) but they are over 35 and fertility clinics usually don’t accept donors over 35 years old, so I am still looking for a donor. I still have not found a clinic abroad (please let me know if you have been to any and had a successful result).

I have decided to take it easy (or at least to try) as I do not want to end up depressed by all of this. It is hard sometimes. I want to start accepting that maybe it will never happen. I do not want to give up but I want to let go of the pressure and the struggle. I want to trust that whatever happens, I will be fine.

For now, I will continue taking Letrozole as it is helping with the endo pain (5 days or 10 days and not the whole month).

Next time, I will talk more in details about the effects of Letrozole on my endo during those last 6 months.

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DHEA and ubiquinol to help low AMH

So, as soon as I got the result of my AMH test, I started researching supplements that can help with the health of my eggs.

Medical opinions are very mixed in that matter. Some say there is nothing you can do to improve the health of your eggs and others believe that DHEA and ubiquinol can help.

There are no studies on humans for the ubiquinol but a study of mice by Dr. Robert Casper and colleagues at Samuel Lunenfeld Research Institute, showed that CoQ10 supplementation on mid-aged female mice resulted in more pregnancies and more babies per litter. “They found that when CoQ10 was given to 52-week-old mice – about mid-age for a mouse – their eggs appeared to rejuvenate. There were significantly more egg follicles in the old mice treated with the CoQ10…”

Ubiquinol is a better form of CoQ10. I have been taking a daily dose of 300mg of ubiquinol for about 2 months now, that is the equivalent of 600ml CoQ10. I buy it on amazon.

DSCN0076As for DHEA, I asked my consultant and my gyneocologist uncle about it and they both recommend it. Again, the medical profession has mixed opinions about it, some think it is worth taking and other think it does not affect egg health at all. The research I like the most is the one from CHR as they do use it with their patients so they have lots of experience with it. The thing to know is that it may help for those who are over 40, and for those have a low AMH level (even if they are under 40).

I have been taking a daily dose of 75mg of DHEA for about 2 months and a half now. I buy it from a pharmacy in France. I suggest you get it preferably from a pharmacy as they can compound it into a micronised version which is better absorbed by the body, alternatively you can also buy it direct from McPherson Labs or from www.healthmonthly.co.uk (make sure the one you buy is micronised). The only side effect I have is a very slight increase in acne, which I am OK with. One positive thing that I have also noticed is that DHEA does help with my feelings low, since last year this infertility issue has taken a toll on me and since taking the DHEA the number of times that I have felt low have greatly decreased. Here is a list of conditions that may be helped by DHEA supplementation, and depression is among them.

Other than that, I am still endometriosis pain free, thanks to taking letrozole 5 days a month. I will write about my 2nd cycle on letrozole next time.

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.

 

 

Clomid, progesterone and endometriosis

As you know, I am trying to get pregnant. So back in february and march, my gp ordered some blood tests and these are the results:

  • UE – U&E (electrolytes): fine
  • TFT1 – Thyroid function – thyroid disease?: fine
  • FBC – Full blood count: fine
  • LH: fine
  • FSH: fine
  • Progesterone: to low
    • My progesterone level in february was 17 (during that month, my monthly cycle was only 25 days)
    • My progesterone level in march was 21 (I have taken some tribulus terrestris tablets for the 1st time that month, so this may have helped to increase the progesterone a bit), (during that month, my monthly cycle was only 24 days)

This means that I may have not ovulated as progesterone level should be at least 30, and below that is a sign of anovulation. I use a Clearblue advanced fertility monitor, and I always get some highs and peaks (when there is a surge of LH – luteinizing hormone – and a rise in the estrogen homone)  every month so I assumed that I was ovulating every month.

I recently learned that women with endometriosis have low progesterone and would benefit from supplementing with natural progesterone whether they want to get pregnant or not.

I then asked my gp to prescribe me some natural progesterone but she said that as a primary care doctor she cannot prescribe that, I will have to wait to see the consultant gyneacologist at the hospital. I was so frustrated as it may take months to get the consultant appointment and I wanted help asap to ovulate. I then decided to try clomid and progesterone and asked one of my uncles (a gyneacologist  who lives in France) to prescribe me some.

clomid progesteroneMy dad bought them in a pharmacy in France and posted them to me (I am in UK).

My prescription was:

  • 1st month: 50mg clomid cycle day 3 to 7, progesterone 200mg after ovulation for 10 days
  • 2nd month: 100mg clomid cycle day 3 to 7, progesterone 200mg after ovulation for 10 days
  • 3rd month: 150mg clomid cycle day 3 to 7, progesterone 200mg after ovulation for 10 days
  • 4th month: have a one month pause and then re-assess the situation

I only took clomid and progesterone for 1 month.

Clomid is the 1st medicine doctors prescribe for those who need help ovulating. My research says that clomid can aggravate endometriosis (it also says so in the leaflet) so it is not the best for those who have endometriosis, that Femara is better. I really wanted to know if I can ovulate on clomid so I took it for one month (from cycle day 3 to 7), progesterone was taken the same month (for 10 days starting after ovulation – which I estimated at day 4 after the last peak sign on my fertility monitor, I wanted to be careful with the dates as progesterone taken before ovulation will cause you not to ovulate).

Well, I did not get pregnant that month. I was not monitored and it is really best to be monitored so that you can check how clomid affects you.

But I learned a few things:

While on 50mg clomid, I continued taking my enzymes (serrapeptase, nattokinase, wobenzym N) from cycle day 1 till it was time to take the progesterone. I had more endometriosis pain than usual, much stronger pain but not agonising so I took some 2 paracetamols and 1 co-codamol (30mg tablets) whenever necessary. It was clear that in my case, clomid aggravated my endometriosis pain .

While on progesterone, I decided not to take any enzymes (serrapeptase, nattokinase, wobenzym N) as I really wanted to know how good progesterone can be for those having endometriosis, as some specialists say (Dr John Lee, and Dr Sandra Cabot). Well, I had no endometriosis pain at all and I actually felt really good physically and emotionally.

Clomid stays in your body, so it can still have some effects on your body for a while, even after you have finished taking it. The next month/cycle after taking it, I had dark brown blood for several days from cycle day 17, and it was accompanied by agonising pain so I had to take a dose of 100mg diclofenac suppository. I was back on my enzymes since cycle day 1, so I did not anticipate having any pain so I guess the pain was caused by the clomid residue in my body. I wasn’t sure if this was classified as a period so I asked my uncle and he said it is called mid cycle spotting, I have never had that before so was worried.

Have you tried clomid (or femara or another type of ovulation inducing medicine), and if yes how did it affect your endometriosis? Have you tried any progesterone therapy for your endometriosis or for fertility? By the way, the progesterone I took was a natural micronised one, 200mg, one tablet a day, to be taken orally or vaginally (the most recommended way).

 

 

 

My endometriosis protocol

I thought I would share with you what has worked for me in terms of managing my endometriosis.

I had struggled with agonising endo pain (level 10 pain) for a very long time and it is only last year that I have decided to make peace with this condition. I let go of the anger, the frustration and the struggle. I have accepted that endometriosis was in my life and given that it is an incurable disease, there is no point in fighting it. I have instead decided to embrace it and most importantly to be grateful for my body and to send loving thoughts to my body, especially in times of physical pain.

That was a very important shift in my attitude towards endo and towards my body. I continued to educate myself about it (plenty of books and internet readings) and worked out what I wanted from this experience. It was shortly after that, that I stumbled on systemic enzymes (serrapeptase, nattokinase, wobenzym N), which gave me the most dramatic results in reducing endo pain. And now, I am nearly pain free.

Below is the book that helped me most: Endometriosis and other pelvic pain by Dr Susan Evans. I learned more from it that from my consultant at the hospital where I was treated. I learned that there are several kinds of pelvic pains that people with endometriosis have. The author discusses in details what medication works best for what pain. If you know what kind of pains you have (instead of just saying to the doctor that you have endometriosis pain) then you can ask for what may help you most. I had been on lots of different pain killers which hardly made a dent in the pain, and I ended up in emergencies at the hopsital several times because I was still in agony even though I was pumped up with the strongest pain killers, it was there that I was offered morphine injections. Morphine works but I was not keen on it.

You can download a fab free e-book if you click on the picture below:

endometriosis book dr susan evans

It is only after reading this book that I learned that the best pain medication for me was the 100mg diclofenac suppository. I requested a prescription from my gp, and indeed the suppository worked. Finished were the trips to the emergencies along with the morphine injections.

Well, the diclofenac suppository was a god send in terms of pain relief. But, it is not suitable for pregnant women or those trying to conceive (it says so in the leaflet). I have asked my gp about this and he said that it is ok to take it even if you are trying to conceive but you must stop taking it as soon as you know that you are pregnant. I didn’t feel comfortable with that answer as I was not keen on taking anything that may hinder my efforts to get pregnant. So, I continued to take it until I found systemic enzymes.

So these were my plan of actions/goals:

1. Optimal nourishment for a healthy and strong body:

  • plenty of vitamins via food and via nourishing infusions (as recommended by the herbalist Susun Weed). I make the infusions at home with dry herbs and boiling water, and try to drink a litre a day, I alternate between red clover, nettle, red raspberry leaves, oatstraw, comfrey, and alfafa. I buy the dry herbs from Justingredients on amazon uk.
  • endo diet: I am not very strict at following it, I mainly eat plenty of fruits, vegetables and fish. I don’t eat meat much and still have diary products. I try to eat home cooked meals as often as possible and only occasionally indulge in processed food
  • organic food as much as possible instead of non-organic, this is much easier in summer as I grow lots of fruits and vegs

2. Work toward a strong immune system:

  • astragalus tincture: 1/4 teaspoon in a little water, twice a day. I also buy this on amazon.
  • probiotic yoghurt, which I make at home

3. Hormonal support:

  • vitex tincture: 90 drops in a little water everyday of the month (30 minutes before eating breakfast), vitex has eliminated flooding during my menstruation. I buy it on amazon
  • dim: I alternate between this and this.
  • fish oil: 3000 mg a day
  • vitamin e oil: I prefer cold pressed wheat germ oil, usually the solgar brand, 1 capsule a day

4. Alleviate pain and hopefully become pain free:

  • systemic enzymes: 2 tablets of serrapeptase, 2 tablets of nattokinase, 2 tablets of wobenzyme N, all together once in the morning (90 minutes before breakfast) and the same dosage again before going to bed at night (every day during the whole month)
  • magnesium 500mg everyday
  • zinc citrate 30mg everyday, usually the solgar brand

There were other things that I tried but not in a consistent way to be able to monitor some results (pycnogenol, progesterone cream and castor oil pack).

Have you found anything that works for you? If yes please share in the comments below.

Update on endometriosis pain management with systemic enzymes

A lot of things happened since my last post. But first, I want to give you some update about my endometriosis pain management with systemic enzymes (serrapeptase/nattokinase/wobenzyme N):

The 4th month:

  • My sister died so I went to France to attend her funeral and spend a bit of time with my family there. I was away for most of the month and didn’t have my usual herbs (especially Vitex) and vitamins with me, I was also out of stock of the wobenzym N. So, I only took 2 tablets of serrapeptase, 2 tablets of nattokinase, all together once in the morning (90 minutes before breakfast) and the same dosage again before going to bed at night (every day during the whole month).
  • Period was normal but I still had clots. I had some pain (period pain and level 7 endo pain ) and had to take paracetamol, I felt that I needed something stronger, like half a co-codamol 30mg but didn’t have any with me so couldn’t take any.
  • Lesson learned: I should continue taking wobenzym N as my endo pain is much reduced when I am taking it.

The 5th and 6th month:

  • I am back on my usual dosage of 2 tablets of serrapeptase, 2 tablets of nattokinase, 2 tablets of wobenzyme, all together once in the morning (90 minutes before breakfast) and the same dosage again before going to bed at night (every day during the whole month).
  • Period was normal but I still had clots. I hardly had any endo pain, only a bit of period pain. I didn’t need to take any pain relief medication at all (not even paracetamol). I just used a heated wheat pad for pain relief.
  • I have also noticed that I don’t have much endo pain during the rest of the month, which is fantastic. I am not completely pain free, I would say that the systemic enzymes have reduced 95% of the endo pain for me during menstruation and during the rest of the month.

I am so happy that my endo pain is now manageable. There are other things that I am doing, that I think are also helping, so I will write about them next time.

PS: I am currently giving away 3 custom made russian doll cases on my other blog if you would like to participate: madebylova.wordpress.com/2015/02/28/win-a-custom-made-russian-doll-case-for-your-phone

Serrapeptase, nattokinase, wobenzym review for endometriosis pain

In my research about endometriosis pain management, I have read about some endo bloggers who used systemic enzymes with great success. The ones most talked about are serrapeptase, nattokinase and wobenzym. Those who have tried them reported being finally pain free so I did more research and decided to take them.

These are the ones I am currently taking on a daily basis. They must be taken on an empty stomach (I take them 90 minutes before breakfast and just before going to sleep at night). You can buy them on amazon.

systemic enzymes

Endo pain is usually worst for me during menstruation, when the pain level is at 10 for up to 7 days, during those days I usually need a morphine injection (at the hospital) or a 100mg diclofenac suppository every day and every night.

These are my experiences taking systemic enzymes:

The 1st month:

  • I took 2 tablets of serrapeptase 90 minutes before breakfast (every day during the whole month).
  • Period is very heavy as before with clots. Pain reduction during menstruation was 30%. I still had to take my usual pain killer for 3 days (100mg diclofenac suppository) in addition to using a heated wheat pad for pain relief.

The 2nd month:

  • I took 2 tablets of serrapeptase and 2 tablets of nattokinase together 90 minutes before breakfast (every day during the whole month).
  • Period is heavy and still with clots. Pain reduction during menstruation was 70%. I didn’t need any prescription pain medication. I only had to take paracetamol and 8mg co-codamol for 3 days in addition to using a heated wheat pad for pain relief.

The 3rd month:

  • I took 2 tablets of serrapeptase, 2 tablets of nattokinase, 2 tablets of wobenzyme, all together once in the morning (90 minutes before breakfast) and the same dosage again before going to bed at night (every day during the whole month). This is the dosage I still take as of today (total of 12 enzymes every day).
  • Period is now normal but still have clots. Pain reduction during menstruation was 90%. I didn’t need to take any pain relief medication at all (not even paracetamol). I just used a heated wheat pad for pain relief. 70% of the pain I felt were like normal period pain, there was one occasion when I had intense endo pain at level 8, but it only lasted for 10 minutes and was eased with the heated pad.

Intense pain is a sign of inflammation and as systemic enzymes deal directly with the inflammation, it is no wonder that they are able to dramatically reduce the endo pain that occurs during menstruation. I think that the enzymes are tackling all my endo pain during the whole month that are caused by inflammation. There are however other endo pain (not caused by inflammation), which I still have during the rest of the month, that I am still in the process of finding natural relief for – at this time I am using a heated wheat pad and 2 paracetamol with one 15mg co-codamol tablets as needed (my prescription was initially a 2x30mg co-codamol, but since last month I found that I only need half of one tablet so I just divide the 30mg tablet into 2).

So to recap, I am very happy with serrapeptase, nattokinase and wobenzym. I find them miraculous for reducing endo pain that are caused by inflammation. They have other benefits (reducing internal endo scarring, preventing further adhesion, clearing blocked tubes etc) which are bound to help the endo condition in general, however they are not a cure (there is no cure according to the medical profession) so my research continues.

Systemic enzyme dosage is a very personal thing as it depends on the severity of your condition and pain. All articles that I have read recommend to start with a high dosage and then reduce the dosage once you are pain free. In this article, Dr James Howenstine MD recommends 15 or more enzyme tablets a day for patients with endometriosis.

Have you tried systemic enzyme for your endometriosis and had success with it? Please share your experiences. Or did you find something else that is also natural that is helping you a lot?