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Author Topic: Period pain running out of options  (Read 3197 times)

joziel

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Re: Period pain running out of options
« Reply #15 on: March 11, 2024, 01:33:09 PM »

Peach8, No, I'm not on the POP any longer - although I could have stayed on that as well as being on HRT, but the desogestrel isn't approved as a progestin for HRT purposes. (There are a few small trials where it has been used at double the POP dose for HRT and it's been fine, and there are some women who are just on a single dose for HRT purposes with scans occasionally to check lining is ok.)

Instead, I'm just on a higher than usual dose of utrogestan to suppress the endo whilst I take estrogen - and it seems to be working fine. Dr Prior has done a lot of work into using body identical utrogestan instead of synthetic progestins for endo: https://www.cemcor.ubc.ca/ask/endometriosis-and-natural-progesterone

I wish I'd known about all that before because I'd rather have been on utrogestan than desogestrel. I was told point blank by 2 GPs 'there is no way utrogestan will be enough to suppress your endo, you'll need to get a Mirena'. They wouldn't give me HRT unless I had a Mirena. But I didn't want a Mirena unless it was my last option, I wanted to try utrogestan first. So I went private and got utrogestan and it's been great. I am very tolerant of progesterone though, and can take as much as anyone wants to give me.

You could look into getting a laparoscopy for your endo. The gold standard is excision surgery. If you're on FB, there are some good endo groups. There's Nancy's Nook and a few others. They have lists of surgeons who do excision. With excision, they cut out the endo from the roots so it can't grow back and it's much more effective. I didn't know about that when I had my lap, and I just had it lasered out. I think mine is mostly under control with copious progesterone now. There have been a few moments on HRT when I wasn't on such a high dose of progesterone and the pains came back. Within one cycle I got rid of them with more progesterone. My lap surgery found just a few small patches of it, no adhesions or major endo. But often with endo the pain isn't correlated with the severity of endo. There are people with no pain who are found to have extensive endo when they have surgery for some other reason. And there are people with intense pain but the endo is very mild, like mine.

And yes, before I was diagnosed with endo 12 years ago, I would throw up and pass out the first day or two of my period. I have not experienced pain like it. I was literally out of my mind with the pain, writhing around on the bed during these attacks. I think I'd pass out to get away from the pain. I found that naproxen was the best pain killer for this and if I took it as soon as I got my period, without waiting for any pain, and if I took it the whole first two days, I was pain-free. This lasted for several years and I thought I had it sorted. Until I started to get pains outside my period as well... But if you haven't tried naproxen yet you might want to give it a go. You can get it over the counter in the USA but in the UK I think it's not as available, but there are one or two period pain meds with it and your GP can prescribe it.
« Last Edit: March 11, 2024, 01:35:11 PM by joziel »
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CLKD

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Re: Period pain running out of options
« Reply #16 on: March 11, 2024, 04:07:18 PM »

 :thankyou:  joziel - that's really useful.  MayB Peach8 - have a discussion with your Pharmacist to see whether Naproxen or similar is available OTC and if not, can he/she recommend a Clinic to attend in order for it to be prescribed.  Let us know how you get on.

I too had dreadful period pains for the 1st 1.5 days.  This would fortunately resolve - until the next month  :-\
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Peach8

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Re: Period pain running out of options
« Reply #17 on: March 11, 2024, 05:52:06 PM »

Joziel, thanks for such a detailed reply. I have tried naproxen and it didn't help unfortunately. Codeine made me feel very ill and tramadol has me tripping. It's "only" 2 days a month but my symptoms sound the same as yours and it's horrific, it made me dread the next month. Mirena is the best so far because I'm getting manageable pain and no heavy periods but I'm just so tired of the constant spotting. I've had around half a dozen bleed free days in the 6 months I've had it and each one of them gets my hopes up only to the be back to spotting for weeks. If I have the mirena removed then I'll be back to the pain plus the progesterone tolerance issues. I have an appointment with my doctor in a few days so I'll push for some action. She suggested pills to induce menopause but that doesn't appeal and they don't seem keen to investigate endo given my age and approach to meno. Urgh, it's never easy is it?
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joziel

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Re: Period pain running out of options
« Reply #18 on: March 12, 2024, 04:09:50 PM »

It might be worth experimenting with some other progestins along with the Mirena. Maybe you won't always need them, but they might help to stop the bleeding faster until the Mirena has had time to really affect things and then you could stop the other progestins.

I don't know what progestins you've tried in the past, but you can take any POP with HRT (it's licenced for contraceptive purposes). So that means the desogestrel POP and norethisterone POP too, if either of those work for you? You can also take utrogestan orally or vaginally. Have you tried that, both ways? Basically, if there is any other form of progesterone or progestin you can tolerate it will help - alongside the Mirena - to stop the bleeding.

You should also ask your GP to test your ferritin (blood test) as with all this constant bleeding you are probably iron deficient. Ferritin should be over 100. There is a great FB group called' The Iron Protocol' if you need to increase your ferritin. Don't listen to the GP telling you anything less than 100 is okay, it's not....
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Peach8

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Re: Period pain running out of options
« Reply #19 on: March 12, 2024, 09:40:11 PM »

Thank you. I took provera with mirena for a while but it didn't stop the bleeding and my mood plummeted with all the progesterone I've tried utrogestan orally and vaginally, felt rotten orally and got raging thrush vaginally. I really appreciate your suggestions though. I will look into the iron protocol, my ferritin was last checked a year ago, so pre all the mirena bleeding, it was 30 then and I was told that was within the normal range. I really think things would be improving with the mirena by now (6 months) if it was going to and I'm fed up with it. Just don't know what to do for the best.
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joziel

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Re: Period pain running out of options
« Reply #20 on: March 20, 2024, 02:29:20 PM »

30 isn't normal for ferritin, it should be over 100. Join the group called The Iron Protocol on Facebook and read the guides there.
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