Feeling in the dark as I start Clomid with a history of endo and cysts. Advice very welcome!

[greynash]

Hi,

A little about me to start... I’m 3-4 years in of TCC (age 33) and have been on a very slow fertility journey through the NHS.

Last year I found out I wasn’t ovulating, had a cyst that needed to be surgically removed, probably had endometriosis and possibly needed my Fallopian tubes removed.

I had a laparoscopy in July which removed the cyst, fibroids, adhesions and endometriosis (was never told what stage it was at / how they removed it / where from. Also have never spoken to anyone about this diagnosis since it was written on my discharge form). On the positive side, fallopian tubes got the all clear

I had a follow up appointment in October where a consultant prescribed me clomid (despite my blood test post surgery showing I ovulated for the first time ever which was great!)

This is perhaps the 6th appointment I’ve had and have never seen the same consultant twice, so was surprised to still be prescribed the clomid as ovulating and decided to wait a few months before taking it incase I could now naturally get pregnant.

Fast forward to now, no natural pregnancy has happened so thought I’d better give the Clomid a go before the endo / cysts start creating problems again.

Firstly....

- Any tips for taking clomid? I’ve read to expect hot flushes / mood swings...

- Also any tips to share with my husband for how to handle this time too / me!

- Is there a good time to take it? Period pains have been so bad this morning I’ve only just been able to get my head round it so it will either be midday or evening now... (I was told to start day 2 which is today)

Secondly,

- Lack of monitoring...

I have a form for a blood test day 21 of the first cycle and that’s it. I’ve read so many people getting trigger shots, scans to check the follicle growth / lining thickness. Also the option of it being combined with IUI which was never discussed and feel like I have had a very basic level of care.

Especially with my endo / cyst history, I’m concerned about taking it for 6months with no medicinal checks along the way.

I was told to make an appointment for a follow up at 6months after I finish the course but considering making one in 3months mid way, just to get to speak to someone? Am I being needy or should I be pushing for a bit more monitoring?

Thirdly

- Has anyone taken this that also has endometriosis / a history of cysts? I’ve read it can flare these up, which after spending 3 months recovering from surgery removing these is the last thing I want. Concerned the consultant didn’t mention this at all and there’s no way of discussing it with them... Considering taking it every other month to minimise impact? Again, something I’d love to discuss with a consultant. But also don’t want to drag this out for a year if it doesn’t work, I’m only getting older!

Sorry for the huge dump of information and million questions! So much uncertainty and no medical contact to ask, so any past experience / advice would really help me feel a little less alone in all of this.

Thanks for listening

[Leesara]

Don’t know the answer to all your points but my tips for clomid would be.... try to remember That the meds can affect your mood and maybe ask your partner to help with the emotional side of your emotions being up and down. I wasn’t prepared for being up and down and would have appreciated a heads-up about it.

If your clinic had an email address or if it’s easy enough to book an appointment, I would after one cycle, just to talk through your diagnosis, how clomid is going and ask if any further blood tests are needed.

Similiar age and situation to you and know it can be tough but try hang in there xx

Wishing you best

[Hidden]

Hi.

I have endometriosis & had 3 surgeries ( 2 after a chemical pregnancy) & took clomid & conceived naturally with my daughter whose 7 months old. I did ovulate on my own but sometimes it was too early & consultant thought clomid would help! I don’t have cysts. I had no monitoring with the clomid either not even a blood test. I did use clear blue digital ovulation tests ( for reassurance)

Ie symptoms from clomid - I had hot flushes for a few days taking the clomid & breast pain throughout my cycle ( hard to say if it was the clomid or the fact I’d conceived that cycle) I’ve had much worse symptoms from endo!

I would advise to get your blood checked to ensure it is working & to give you reassurance ( you can only have 6 months of clomid) If it’s nhs can your GP offer progesterone blood tests each clomid cycle?

At 33 you are still young in terms of conceiving- I conceived my daughter at 37!( down to it taking us 7 years of TTC due to delayed diagnosis of endo 🙄)

All the very best with it all I wish you every success xxx

[Rehanat]

Hey I took clomid despite ovulating and having endometriosis but I found it just aggravated my pain/ endo more and I gave up after 2nd month.

I did conceive naturally but took 2.5 years.

Good luck x

[greynash]

Thanks so much guys for taking the time to reply, I really appreciate the advice, tips and knowing that I’m not alone in this situation! Lovely to hear your success stories too ☺️

[Materialbarbie]

Hi, I was on clomid for 4 months until I fell pregnant! My little boy is almost 3 months old, it’s hard on your emotions so make sure your hubby understands that if you lash out etc! My poor hubby used to get the brunt of it all haha. The night sweats are awful altho I suffered with them before I fell pregnant with my hormones being so all over the place.

As for monitoring, my first cycle I had to go for scans on certain days at the clinic and then blood tests on day 21,28 and 35 if my period hadn’t started again! They do just kind of leave you to it so I was constantly on the phone to find out my blood results etc so I’d keep on at them with that, even then they told me my 4th cycle hadn’t worked and told me to wait until cycle day 41 to start Provera to induce a period but to take a pregnancy test first even tho the blood results said I hadn’t ovulated. Good job I took the test because I was pregnant, the blood tests can slightly miss when you ovulate too so if you have one month that’s good and one month that looks like you haven’t ovulated, you still might have!

I was going to have a break if my 4th cycle hadn’t worked even tho they’d already booked me an app to discuss IVF after my 6 months were up but it is up to you, you might feel better taking a break after so long.

Wishing you all the luck in the world! It’s not the easiest thing but if it works it’s honestly amazing! So lucky it worked for me. The only thing I will say is I got a 9cm cyst from clomid and they found it while I was early pregnant as I went for so many scans due to cramps so they had to monitor it but as long as they monitor it, it’s not bad, mine was shrinking and the midwife said that it holds hormones which help the pregnancy too.

Good luck lovely💖 I have a few posts on my page about my clomid journey and lots of lovely ladies gave me fab advice on them so you could always check them if you want xx

[greynash in reply to Materialbarbie]

Congratulations on it working out for you - it’s so lovely to hear the success stories. Really helpful to know re the blood tests - and nice to know that you can take a break from it if needed. Will definitely take a look at your page, thanks again, and all the best with your little one ❤️

[AnnieAnnie]

Hey there I did 3 cycles of clomid a number of years ago, 3 cycles of ivf, and a further 4 cycles of clomid (the latter 4 cycles last year). I was advised to take clomid at night to help with the side effects. I've found the more cycles I've done the easier they've become, as in less side effects or I may be used to them by now. I did get pains in my ovaries, but that is to be expected as the clomid is helping produce follicles and assist them to grow. It was like a sharp pain but having suffered painful periods most of my life, it wasn't anything I wasn't used to.

Monitoring seems to be kept to a minimum especially if you are under NHS care. My first cycle I had a blood test and a transvaginal and after that cycle no further monitoring. I ovulate according to opks but they do not guarantee that you have ovulated. Blood tests and transvaginal scans are the most reliable way of determining ovulation and from those that I have had done, confirm I have ovulated. Saying that, I may not ovulate every month but have been lucky enough for it to be picked up when I've had scans or bloods. I don't currently have a diagnosis but am having investigations for suspected adenomyosis and I'm also pushing for them to rule out endometriosis after years of suffering with pain and heavy and excruciating periods.

If you are concerned about the lack of monitoring and your not offered more by your current doctor, you could always make enquiry of a private clinic for costs of bloods and scans. I've paid for bloods and scans privately during ivf and they are not cheap, but if it helps put your mind at ease, it may be an option.

Ultimately if you have any concerns, contact your prescribing doctor.

Good luck xx

[greynash in reply to AnnieAnnie]

Thanks Annie, I’ve gone for evening so good to know that’s advised! As you said, after suffering with terrible periods I’m hoping that side of it will be fairly manageable

Nice to know the minimal monitoring is common, I guess I’ll take it cycle by cycle, if I do struggle it’s a good point that there’s the private option if needed.

I really struggled with the side affects of endometriosis for 5 years before diagnosis, and looking back I probably had it for 15years. The diagnosis was only because the gynaecologist I was seeing for fertility told me they had to operate on my ovaries / Fallopian tubes and found it while they were in there, no one took it seriously before then and was frequently told it didn’t exist, or I don’t have it and my symptoms were all normal for periods. So I wish you all the luck in the world with those diagnoses. 2 years ago I realised it would be very surprising if I didn’t have it, and I can only advise you to follow your gut and insist on more tests, believe in what you know isn’t normal. I really hope you get there with it, good luck xx

[AnnieAnnie in reply to greynash]

I think the important thing through any of this treatment is to make every day life as easy for yourself as possible so that if you are feeling rubbish from clomid then you're not putting yourself under any added pressure or stress. I've tried making myself busy so that time passes quick and I've also isolated myself from everyone. It's finding that balance that works for you at that specific time.

You will do great, make sure you drink plenty of water and rest when you need to. As with IVF, it's good to keep good blood flow to the ovaries.

Thank you. I've been waiting for nearly a year to get a referral and seen by a specialist and have also moved across the world. I know I need to get to the root of my pain before even ttc through ARTs again xx

[greynash in reply to AnnieAnnie]

Such great advice, thank you 😊

All the very best to you getting the help and treatment needed xx