Tamoxifen

[ChicaXS]

Hi all

I am about to venture into IVF in the next 2-3 months but want to try one final push at natural conception with ovulation induction. My clinic were happy to do so and prescribed me 40mg of tamoxifen to trial for one month. It’s not clomid (I wonder if this was due to my PCOS) but cannot find any stories on Mumsnet of anyone taking it? Any success stories first time round? I just wonder if it’s worth proceeding but I’d rather exhaust as much natural options before IVF.

Cheers

I took it as part of my natural modified IVF cycle - mixed results - I did produce follicles but first time only 2 and second time 7 bud I don't have any trouble ovulating etc

Hey @ChicaXS, I’m keen to know how your Ovulation Induction journey goes/is going. I took Tamoxifen for the first time three weeks ago, due to persistent annovulation and 20-day cycles. My 21day blood test showed my Progesterone was nice and high, so I definitely ovulated. I am now on CD25 and 12DPO but refusing to take an early test as I’ve got my usual pre-AF symptoms (full ache at sides of breasts and a constant need to eat ) so I fear I’ve missed out this month.

I, too, am interested in knowing other people’s experiences using Tamoxifen!

@tecalina so glad I found you! :) I will defo keep you posted. I’m still waiting for my AF to arrive (it’s late and I’m not pregnant!) so I can start. Please let me know how you get along too, I commend your bravery and patience I would have caved by now in testing lol! Are you with create? It seems like they are fans of tamoxifen.

@ChicaXS it's nice to have someone in a similar situation, I think I've struggled so much recently because I've had no one to talk to. I know I'm very lucky in terms of the issues I face (it could be a lot worse!), but when your body isn't doing what it should do and when you watch your friends get pregnant so easily, it's really disheartening.

I am indeed with Create! So far they've been really wonderful. I know the chances of pregnancy are still really low with OI, but I guess we've got to try! How long have you been TTC?

@Tecalina awww your not alone but I totally understand and feel the same. I am 37, my family are supportive but besides my mum I haven’t told anyone of my struggles. My husband is great but completely dislocated from the female perspective and tbh don’t have many friends that understand. I feel like time is against me and it’s a difficult struggle. I’ve been TTC for nearly two years now and had no luck with medical aid (I was with the NHS) was on the list for ivf and now halted due to covid.
Just try and stay strong. How long have you been TTC and what is your age? Do you suffer from PCOS ?

I completely get what you mean - I don't know anyone who's experienced infertility of any kind, so my friends struggle to understand the frustration. Completely not their fault, but it has made lockdown more isolating, not being able to talk about how I'm feeling.

I feel guilty sometimes because I'm 'only' 32 so realistically I have "loads of time" but we've been TTC for three years and it's very frustrating...yet we're only at the start of our fertility journey (if you don't count the three years of disappointment!)! I don't have PCOS, so again I'm lucky, but I've heard this sort of treatment is very good for people with it. What has the doctor said to you?

One interesting thing I found was, when I went for my initial ultrasound (before my consultation) I had follicles in both ovaries (not many, but a few!). When I went for the second ultrasound, following the Tamoxifen, my left ovary was empty and I only had one decent-sized follicle in my right one. I'm not sure if that was due to the drugs, or just the way by body works, but it'll be interesting if you find something similar happens to you! I also had no EWCM on/around ovulation day, which is unusual for me.

I'm wishing you all the luck in the world with this, my fingers are so tightly crossed for you! Just need damn AF to turn up 😊

@Tecalina never feel guilty, I believe we should have the chance to be a parent whenever you feel ready! 3 years is a long time - were you diagnosed with unexplained fertility?

The doctors always advise something different when it comes to PCOS! I have given up really taking their advise and learnt to control the symptoms (but no it’s not cure) through natural remedies. Best way is diet and exercise and I swear by myoinsotol which controls insulin levels.

Issue is I have blocked left tube so doctors always ran away from the clomid route - but I did get pregnant via my left ovary and a Doctor seems to think my left tube could have spasmed during the HSG! Another doctor thinks my right Fallopian tube swing over and sweeper the egg. Either way I’m left with limbo and know I’m taking the chances via tamoxifen but deep down know I need ivf.

Keep at it, you are doing right- are you also tracking ovulation? Regarding follicles - they can change every month but one thing for certain is you usually have one dominant follicle which can switch sides. Have you done the basic fertility tests such as your AMH levels? X

@ChicaXS To be honest I wasn't diagnosed with anything. My GP just said I wasn't ovulating and pointed me in the direction of Private treatment as lockdown had started. Because I wasn't shedding any lining each month and I wasn't ovulating, I like to assume my body just wants to hold on to things

I'm going to try OI for three months, then after that I will have my AMH test and they'll investigate the tubes. It's probably not the best order of doing it but when I had my consultation I was due on my period two days after and I just wanted to get started with the tamoxifen!

You said you were pregnant before, was it a successful pregnancy (forgive me for asking!)? I think you're completely right to take your chances with tamoxifen, you may regret it if you don't. While the OI chances aren't great, at least you can say you tried every avenue What can they do about blocked tubes?

I definitely ovulated on the 3rd June (my OPK was positive on the 2nd) xx

@Tecalina when you joined with create they should have given you a blood test and scan as part of the consultation fee? Well this was the big push during covid anyway so it may have changed. It’s worth getting your AMH test done especially going on fertility treatment do they can manage the dose. I would raise it with them for sure! How old are you if you don’t mind me asking?

I’m glad we’re tamoxifen sisters so hopefully we get good results!!! How are you feeling this far?

Regarding blocked tubes there’s no treatment. Sometimes a laparoscopy can unblock them but usually they advise to remove the tube since we’re high risk for W topics. I was due a laproscopy then I fell pregnant so they cancelled the operation - I found out on the day!

Sadly my pregnancy ended with a termination because my baby had chromosomal issues which we found out in week 14. It’s been incredibly hard as we worked so hard to get pregnant only for our baby to not make it. Infertility is a cruel cruel aspect of life.

Create has my history but we’re so supportive in trialling tamoxifen even though they advised straight to ivf so I just need AF to hurry up so I can begin the efforts! I’ve been feeling so nauseated and think it’s my vitamins I’m taking to maybe I need to take back on taking them. So far getting BFNs! I’m due tomorrow but my cycles are psychopathic lol.

Xxx

This is interesting to me because I've only ever heard of Tamoxifen being prescribed for breast cancer and had no idea it had uses in infertility.

I found this on breastcancer.org :

You should not take tamoxifen if you are breastfeeding, pregnant, trying to get pregnant, or if there is any chance that you could be pregnant. Tamoxifen may cause damage to developing embryos.

@ChicaXS When I joined Create (mid-May) they only offered the consultation and initial scan for the fee, I had no idea about the blood test. I'm 'only' 32 so I don't think I need the AMH test urgently, but if three rounds of OI fail, I'll definitely be requesting it!

I'm feeling absolutely fine to be honest. My boobs ache a bit still (less so than previous months) but that's my usual pre-AF symptom. Because I wasn't ovulating, my cycles were extremely short but I think the Tamoxifen has lengthened it. I'm on CD26 now which is unheard of for me! I'm expecting AF in the next couple of days though.

I'm so, so sorry to hear you had to terminate your pregnancy. How long ago did that happen, if you don't mind me asking? It sounds like you've had a really rough time during your fertility journey, you're definitely due some good luck. You must be incredibly strong to continue with it all, I so hope it works out. Sending you hugs from afar! I'll keep my fingers crossed that AF arrived for you tomorrow and please keep your fingers crossed for me that mine doesn't! I promise to keep you updated on any symptoms so you're prepared! I did find that the Tamoxifen made me very bloated and gassy (so sexy ) but that subsided after a couple of days!

@Lynda07 that's a worrying warning from the official website! I think the use of Tamoxifen is fairly new for fertility as there aren't many studies on it. I found a few before I signed up for treatment, as I wanted to know what drugs I'd be taking, and they don't mention any sort of embryo defect, so I hope it's just a precaution! Thank you for pointing it out though, I will mention it at my next appointment!

@Tecalina I will pray for AF to stay away for you hun! It’s such great news that your cycle has extended (sounds like you have a short luteal phase?) which maybe your problem?
I will pray mine come tomorrow, was googling any bars open here in London so I can relax this weekend ha!
Thanks for your kind thoughts and blessings, and yes I definitely feel stronger! It makes me more determined but also more cautious for sure about having a healthy pregnancy. You never think this could happen to you but it’s crazy how lightening strikes. So many women go through TFMRs and I joined an amazing forum that counsels women that have been through it. Chances are it won’t happen again (we have both been genetically screened as were ok thankfully) but still I know I will be a paranoid mess if I do get pregnant !
Regarding tamoxifen, my doctor told me to ignore the pregnancy warning on the label and said it’s used by the NHS and many others around the world in recent years for women that suffer from PCO or women with thin linings. It’s a milder form of clomid but essentially does the same thing. Doctors know best right? 🤷‍♀️ x

@Tecalina forgot to add, I had my termination Feb this year xx

@ChicaXS Yes, my luteal phase was only 7 days, so no time to build up a thick enough lining! Did you have any luck finding a bar? I have been alcohol-free for six weeks but I've said I'll have some (/lots of) wine for my mum's birthday on Saturday, if AF does arrive!

You really have had all the tests, haven't you? What does the genetics screening consist of?! I must say, I'm very envious of your attitude towards it all. You seem very level-headed, which is definitely the best way of dealing with things, but many people would struggle! I completely understand why you'd be anxious if you fell pregnant. Because of my body's refusal to naturally produce progesterone, I'm worried about falling pregnant too and it may be hesitant to do other necessary processes, but I try to stay positive!

Thanks @Tecalina
I don’t want to play doctor here however agnus castus is good for regulating cycles and extending the luteal phase, aspirin I renowned for thickening the lining aswell but ensure it’s baby aspirin. Your still young so enough to play on the herbal and natural side of things! Don’t worry regarding progesterone - just flag this and the clinic will provide you with pessaries as a precaution.

Genetic testing is only offered if you experience a chormosomal issue. It’s a routine blood test taken and matched when they autopsy the fetus . Newer technology today actually can identify at the time of the CVS and bloods taken and thankfully we were ok. It was just evil luck.

AF is still away but I woke up unwell with a temperature and body aches which I think is down to stress because of infertility! It’s got to me this month.

I hope AF is staying away with you?!?
X

@ChicaXS I've heard Agnus Castus is good for the luteal phase, but because I was already pumping my body with B vitamins complex, D vits and Follic Acid, I didn't want to overload! My luteal phase is currently 14 days (no AF still), I'm guessing due to the tamoxifen. My progesterone was also very high last Monday, as I ovulated and my body was forced to do what it was supposed to. It's just a shame our bodies need drugs to operate properly! But hey ho, at least we have this wonderful medical world at our disposal

It's tough not to make yourself ill with all the worrying and symptom spotting, isn't it? I don't think I've ever been paid so much attention to my body! I'm really glad your genetic screening came back ok though, that's one less worry I guess! How are you feeling now?xx

Tecalina:
@Lynda07 that's a worrying warning from the official website! I think the use of Tamoxifen is fairly new for fertility as there aren't many studies on it. I found a few before I signed up for treatment, as I wanted to know what drugs I'd be taking, and they don't mention any sort of embryo defect, so I hope it's just a precaution! Thank you for pointing it out though, I will mention it at my next appointment!
.....
I'm sure it would not be prescribed for infertility if it wasn't safe. It just came as a surprise to me, is all. My mother in law had breast cancer and was given Tamoxifen which actually shrunk her tumour but she did have some bleeding pv which is, apparently, a side effect.

This from ncbi:
Twenty-three out of 160 women who received 40 mg of tamoxifen conceived, giving a pregnancy rate of 14.38% and pregnancy rate per ovulatory cycle as 14.94%. 32 out of 80 women who received 80 mg of tamoxifen conceived, giving a pregnancy rate of 40% and pregnancy rate per cycle as 33.68%.

Sounds good to me!

@Tecalina medical aid is better then no aid! :)

I would give agnus a go, I actually stopped taking them mid cycle as my cycle was extremely lengthened which I needed the opposite! I didn’t ovulate this month until CD 27/28!

When Did you go in for your scan with create? They provisioned CD8 with me but I’m going to ask they push it back as I have long cycles!

I’m just feeling run down, body aches, temperature, sore throat. Don’t know if it’s stress, corona or PMS. One of them are inevitable lol!

When are you tempted to test? Your 7DPO right?

@Lynda07

Tecalina: *@Lynda07* that's a worrying warning from the official website! I think the use of Tamoxifen is fairly new for fertility as there aren't many studies on it. I found a few before I signed up for treatment, as I wanted to know what drugs I'd be taking, and they don't mention any sort of embryo defect, so I hope it's just a precaution! Thank you for pointing it out though, I will mention it at my next appointment! ..... I'm sure it would not be prescribed for infertility if it wasn't safe. It just came as a surprise to me, is all. My mother in law had breast cancer and was given Tamoxifen which actually shrunk her tumour but she did have some bleeding pv which is, apparently, a side effect.

This from ncbi:
Twenty-three out of 160 women who received 40 mg of tamoxifen conceived, giving a pregnancy rate of 14.38% and pregnancy rate per ovulatory cycle as 14.94%. 32 out of 80 women who received 80 mg of tamoxifen conceived, giving a pregnancy rate of 40% and pregnancy rate per cycle as 33.68%.

Sounds good to me!

That’s good news on the stats though my clinic only gave me 40 to start with. Guess they will monitor and advise to up the dose if unsuccessful? I have enough to take 80 though lol

@Lynda07 That's some data I get get behind! Thank you for finding it, it's so good to hear that success can happen from the use of Tamoxifen. Chances are still fairly slim but we've got to stay positive!

@ChicaXS I'll definitely give it a go if my three rounds of OI fail. So far, with just the tamoxifen and ovitrelle, I ovulated on day CD13 and am now on CD28. A far cry better than my usual anovulation and 20 day cycles!

I went in for my scan on CD11...Day 8 seems very early, especially if you have long cycles. When I went in they found a nice 17mm follicle, so I was advised to inject myself with ovitrelle that evening, resulting in ovulation two days later. I definitely think you should ask to push your appointment back, otherwise you'll be going in two or three times for scans and that could get expensive/time consuming. What CD are you on now? Do you get quote heavy periods of your cycles are so long?

I've been tempted to take a test for a few days, but I'm certain AF will drive tomorrow or Friday. If I get a BFN and then AF, it'll be double the disappointment! I'll just wait a couple more days xx

@Tecalina let’s both test on Friday. I know mines negative as I had such a confusing month but for you, for sure a FRER will tell you if your pregnant or not. Awww I’m excited for you!
I’m on CD35 LOL no signs of Aunt Flo but I think I ovulated last Wednesday as I had my peak then but with PCOS peaks can be misleading as we suffer from LH surges. So my period won’t arrive until next week if I did ovulate last week. still feeling unwell today.
You’re definitely right about pushing the date back, I did tell them this and totally agree- spending on unnecessary scans is not needed! Did you only have one?
How was the injection?!?

@ChicaXS So I did a test today (purely to find out if I can have a few drinks for my Mother's birthday on Saturday) and I'm in total shock but it was positive! I've tested four times, different brands, all the same. I genuinely cannot believe it because I was so sure AF was going to arrive. But I'm not getting too excited, I know how common miscarriages are and with my hormonal issues, I'm expecting the worst. But hopefully I can be your tamoxifen success story. Fingers crossed!

CD35? You must be going crazy! When will you push your scan date back to? I only had the one scan, luckily they found a decent follicle that day. The injection was fine, I got my partner to do it as I didn't feel comfortable! Do take a test tomorrow and let me know anyway Χx

@Tecalina oooooh I am SO HAPPY FOR YOU! Congratulations girl! 🥳 you must be so so happy!

Don’t worry about what might happen, focus on the positivity, it worked, you got pregnant and life is good! Try and stay upbeat and positive, worrying about miscarriage and the rest will only induce stress. The chances you will carry a healthy pregnancy outweighs the other end of the scale. I would call create and let them know - would be good to get bloods as well as advice for your progesterone. Just so happy for you!

I’ll take the test tomorrow but it will be a BFN as I have zero symptoms for pregnancy and zero for AF. I really want AF to come so I can start tamoxifen, it’s given me more hope now I read your experience! Congrats again xx

I am very, very happy, but trying to stay grounded until I'm able to know more! I will definitely be ringing Create today, and having anything they can offer me to keep track of what's going on inside my body! So far I'm waking up bloated, the outside of my boobs feel bruised and I'm panicking at every twinge in my lower abdomen

I'm keeping my fingers and toes crossed for you that AF starts soon so you can begin your tamoxifen journey When did you rebook your scan in for? Please continue to keep me updated on your progress!xxx

@Tecalina I will push my scan back for sure. They know I have PCOS so they just told me to call when when AF arrived and they will discuss when to get the scan in. AF still hasn’t arrived and I took a test and is a BFN! Lol . She’s really taking her time this month and I think it’s because I started taking agnus castus and it really messed up my cycles. Saying that I did has very long cycles before!

Aww don’t worry about the twinges, actually in a weird way it gave me comfort since I know my uterus was simply growing!
The only time I panicked was when I used to go toilet and worry I see blood but that was me being frantic in the first 9weeks. After that I totally relaxed. I know it’s hard but try and enjoy the pregnancy and remember the chances of you having a healthy pregnancy outweighs anything else!
Of course I will keep you uploaded, my lovely tamoxifen sister lol. Xxx