Severe Progesterone intolerance - running out of options.

[AreMyHRTdaysover]

I've been on HRT a decade.

Unfortunately, very quickly it became evident I am severely progesterone intolerant. My symptoms were suicidal thoughts, severe depression and anxiety. Bloating, exhaustion and insomnia.

I've been on Femoston, Utrogestan, Everol Conti and currently on Slynd.

I tried Utrogestan in every way possible, orally, vaginally, continously and sequentially.

Slynd has been much better. Been on it 8 months. I started spotting/bleeding after being on it 3 months. I have been spotting/bleeding for 5 months and its getting worse, not better.

I've contacted my GP today, regarding the spotting and changing progesterone.
Any suggestions as to what i can ask for other than a Mirena?

Or are my HRT days over?
I'm 52 so was hoping to stay on it a few more years.

No idea but let me know if you find out!

I’m in a different country so this may not be an option for you but I am having a hysterectomy to ensure I can stop progesterone.

At the moment I take Duphaston and I tolerate it better than the others. I had to get the Mirena removed after 3 weeks.

Have you tried Cyclogest? I had the same problem and in the end I booked an appointment with the Newson clinic. They suggested Cyclogest pessaries (which you can use vaginally or rectally) and they’ve been brilliant. No side effects at all and they’ve also helped my PMS symptoms. Like you, I had tried Utrogestran in every form, also Provera and the coil.

Can Cyclogest be taken orally?
I work Rotating shifts so pessaries are convenient.

What about Nalvee? It's dydrogesterone which is in Femoston but you may find it works differently as a tablet on its own.

Have you seen a specialist?
There are other options such as longer cycles (sequentially) which would reduce the amount of progesterone, but come with the safety net of scans.

There is also the option of the mini pill taken in 3 x the normal dose.

I have been offered a hysterectomy but thats just not an option as I'm a single parent, young dc, work full-time and have no support or help.

You can insert pessaries at any time- doesn't have to be bedtime - as long as it's once every 24 hours.

I tried utogestan in every way possible to and hated it, gave me horrendous hyperaurosal insomonia.

In the end I was, reluctantly, persuaded to try the mirena coild, and I love it, best sleep I've had in a decade, settled symptoms as no fluctuating progesterone levels, lovely.

Get them to leave the strings long, there is a peer reviewed paper around the safety of safe removal of coils, and if you get desperate it's fine to fish it out yourself if you can locate and grip the strings (I just needed to know this for reassurance!!).

It can get better.

@Iloveshihtzus Duphaston is the brand name in Ireland for dydrogesterone now called Nalvee here in UK.

Thanks.

Yes I have seen multiple specialists including the Newson clinic (they recommended a Mirena).

Yes, did about 4 yesrs of long cycles but when i had to take the utrogestan, it was horrendous, literally I wouldn't be able to get out of bed and I would plan how i was going to die.
The bleeds were getting heavier and heavier.

Why would Nalvee work if Femoston didn't?

I sympathise OP, I had the same problem with progesterone. After trying everything I reluctantly tried the Mirena and it’s been amazing for me. I held off because I was scared they wouldn’t remove it if I had the same problems but my GP who inserted it promised me she’d remove it straight away if needed.

My fear is if I can't get the coil out I would kill myself before I manage to get a doctor.

I've come dangerously close too many times.

I wrote myself 3 letters to open on day 3, 6 & 9 to remind myself its the utrogestan that causes me to feel so bad. Thst its not real.
My consultant totally dismissed me until I had an appointment whilst I was on utrogestan. He was so shocked, as I was literally like a different person thats when he offered me a hysterectomy.

It's worth a try?

The other thing with coils- there are 3 coils available. The Mirena is the one most often used. There are two others that are an option (I think this is off-licence) and the middle one which is smaller than the Mirena can be used for HRT. I think it's called Jaydess (?)

Absolutely as otherwise I'm stopping HRT.
Interesting regarding the Cyclogest, as utrogestan only needs to be taken at night as its the sedative effect rather then it being used as a pessary.

Thanks, you've given me some options, earlier i didn't feel like I had any.

Appreciate your advice.

You could have a plan, you've got a more than one in three chance of removing it yourself at home if the strings are left long.

https://www.sciencedirect.com/science/article/abs/pii/S001078242400074X

Back up plan of a private clinic (that has ultrasound and specialist IUD removal tools (My strings went walkabout on my copper IUD, so went I finally agreed to have the mirena I then had the faff of dealing with that - but once I want to the right place they got it out in a matter of seconds) - have the money set aside ready.

Talk to your GP before having it to see who at the practice removes them and ask for a note on your record about your concerns incase the receptionists become awkward trying to dismiss it as not an emergency.

Thanks for your suggestions but the suicidal idealation is so bad, I get scared I wouldn't have the capacity to go to a HCP for help.

I'm a single parent so there's no spare money to put aside for private appointments and scans.

My GP is incredibly difficult to access. I'm currently waiting 6 days for a phone appointment.
When I was really bad on the utrogestan I couldn't get washed or dressed, let alone drive to the doctors or a clinic.

I have similar issues and the mirena coil was just horrendous - I literally begged my GP to remove it, which he did fortunately. I saw a specialist and we finally settled on Cyclogest pessaries for 12 days every month, which my GP has been happy to continue to prescribe. It's the 'best' I've felt whilst on progesterone and I've resigned myself to having to tolerate it for 12 days a month or have a hysterectomy as there is no way I'm coming off the estrogen

@midnightserenade Can I ask how it's any different to using micronised progesterone, as they are the same product but packaged differently? ie Cyclogest is a pessary but micronised progesterone is also available as 200mgs pessary. I'm genuinely curious as I use micronised progesterone vaginally and wonder if Cyclogest is any different/ better? (I know it's off licence for HRT but can be prescribed by a specialist or GP who is willing to.)

(When there was a massive shortage of Utrogestan a few years ago, my consultant did say they could prescribe something different, if I couldn't get any, and looking back maybe that would have been Cyclogest.)

I genuinely don't know the difference between the two, I just know I feel better on Cyclogest. I have horses and find that some generic drugs are simply not as effective as the original branded ones (and I'm always trying to save money so very biased towards the cheaper generic ones!) I wonder if you are particularly sensitive to a drug then a slight difference in the way a drug is manufactured can make a difference?

Thanks. Utrogestan isn't generic- it's the original brand and I've used it for years- around 12.

The coil. It saved my life and my marriage to an extent.

My GP promised me she would take it out immediately if I reacted the same way as I did on utrogestan. She took me very seriously when I sat down and howled in the surgery mid way through a utrogestan cycle.

I don't cry any more at all. I sleep amazing. No more sore breasts. No more walks where I would cry and cry. No walking through treacle the next day.

Has anyone had a mirena when younger, and struggled terribly with side effects, but then been ok with one during peri/menopause?.I am starting to realise that something is not right (insomnia, anxiety, stress) on 200mg oral prog every day. But I'm so scared of the mirena, it was terrible at the time.