Hormonal?

[JaxPow]

I think I'm having another flare up and as I'm now tracking symptoms ready to see the rheumatologist I've realised that the last one was 4 weeks ago. Could it be linked to hormonal cycles? Has anyone else noticed anything like this?

[Shorthouse]

I believe hormones triggerd the whole lupus thing off.i was in good health until I was pregnant.the menopause just was the tin lid to horrible symptoms.i’m 65 now!!!!

[MidnightMystery]

Hi, I’ve noticed a link with the hormones and the flares too! My flare started the week leading up to my period I’m now on CD10 and still in flare mode.

[Mifford]

My flares were definitely related to my cycle and I was also getting a hit when I ovulated. I’d double up with appendix style pain which was what I had at 19 when I first started having health problems. We know its not my appendix as it’s not there any more!

After a something oscopy where they stuck a camera in via my belly to have a look nobody could find any problem with my ovaries to cause the pain so I was fitted with a merena coil and it has helped loads. That was about 6 years ago now and I’m on my second one - I really knew when the first one was running out! Two weeks ago I had the first mini cycle in about 4 years and this week I had to get a depomedrone injection so I’m guessing hormones are still causing problems when they rear their ugly heads.

It’s definitely worth discussing it with your doc if you see a pattern. Be careful though - before I was diagnosed I was put on the standard pill for years when they couldn’t find what was wrong and it was only when I saw gynae after diagnosis that they told me “of course you can’t go on the oestrogen pill as it’s dangerous in lupus”. Oh goody! Nobody else had mentioned this but increases in oestrogen for lupus patients is a bad idea apparently. I would have had to go on the progesterone only pill which has to be taken at the same time every day and was too much of a faff hence me opting for the coil as a much simpler solution that I can just forget about. I wasn’t looking at having kids though so obviously might not be so straightforward if your circumstances are different.

Good luck x

[miccika1]

Yes. Im on progesterone only and i have much less flares since taking it. I think to much estrogen compared to progesterone is a trigger as well as others such as too much LH

[Lisalou19]

This is so me, I was very well until I gave birth in 2003,then things changed . I got pregnant again in 2013 and felt on top of the world , normal at last. Then approximately 9 months after giving birth all hell let loose and I’ve slowly deteriorated since then 😔. Sometimes I wish I could be permanently pregnant. I can tell what day of my cycle I’m on just by my symptoms.

I was told symptoms can disappear during pregnancy because our hormones don’t fluctuate as they normal do.

I thought I had a rare disease called autoimmune progesterone dermatitis. I still think this is an underlying cause but hey I’m no doctor 🤷‍♀️X

[JaxPow in reply to Lisalou19]

I've had a hysterectomy (cervical cancer) so I have no idea where in my cycle I am!! Might see if I can work it out by tracking symptoms.

[Mifford]

Sorry to anyone squeamish but period talk following .... look away now if of a sensitive nature 😊

Obviously it’s diffeent for different people but when my first one went in I was under anaesthetic so didn’t feel it. The new one it was uncomfortable having it removed and the new one fitted and not something I’d want done every day but it wasn’t enough to put me off and it wasn’t as bad as I expected it to be.

The first one I did bleed quite a bit for the first 3 months or so and from memory it felt as if I only had a few days break between each time but not as heavy as my periods and a lot better than the large clots I was getting. After that it just stopped. Every now and then I have had some spotting that last a day or so - occasionally I’ve had to use a pantyliner but it’s generally been more I’ve noticed it when I’ve gone to the loo and wiped (there’s no really nice way of explaining that better lol).

A couple of weeks ago I had a slightly heavier bleed that went on for 3 or 4 days. It wasn’t really heavy and was more what I used to get the last few days of a “normal” period when it was tapering to the end. I did use a sanitary towel one of the days but for my peace of mind more than anything as it was so different to normal I wasn’t sure what it was going to do. But that is literally all I’ve had for 6 years now and it’s been probably an average of once a year once I got past the first 3 months.

I was very dubious about getting it but have been very happy once it settled down. I have seen others who haven’t liked it or got on with it though. The way the gynae sold it to me is if you don’t get on with it it takes 2 minutes to take it back out and it’s gone so I had nothing to lose. Not strictly true with lupus as you never know what you might spark but for me I decided it was worth trying it.

Hope that helps x

[Mifford]

I totally agree on the last bit. I had what I thought were totally normal periods from 11 because they’d always been heavy, painful, long and big clots. i just assumed everyone did and as you say its not something people compare notes on and it may have helped. I’m all for being open but for anyone who isn’t they can’t say they weren’t suitably warned 😂😂

[Chanpreet_Walia LUPUS UK]

Hi JaxPow,

According to The Lupus Encyclopedia, it is common for lupus activity to be related to the menstrual cycle. Therefore symptoms can flare up during and around the time of the period.