Lupus and Menstrual Cycle

[tracysmilie]

I always had severe problems with my periods since I started them as a child, I would vomit and have to take time off school.

My Mum had enough of seeing me in so much pain, so she took me to the doctors and put me on the pill, I thought I was in heaven lol , but then I was diagnosed with Lupus and had clots on the lungs and had to come off the pill and cannot go on any Form of the pill. Now periods are much worst.

2 weeks before my period I get nausea, get really weak, bad fatigue, joint pains. Then when it starts I vomit for about a day and half, diarrhea, but the pain is unbearable. I am sure child birth is not worst (no children yet) lol. I cannot eat, drink or take painkillers because of the vomiting. The doctors cannot do anything for me accept HRT which I might considered after I have passed the age of having children.

I am a happy and bubbly person, I just try to do things to make me happy. It so hard sometimes when I have a flare or feel distressed, my family and friends keep me going, also my support group, which I attend once a month.

[tinkey]

Hi!

I too suffered terribly with my periods as a young woman. I used to faint,vomit,etc like you. I had a laparoscopy when I was 20 and diagnosed with endometriosis, which I think is quite common in lupus. I was told when I had children it would go away and indeed it did. However this is a drastic cure lol! There are things drs can do, so please go back again. You shouldn't have to suffer like this. Good luck

[tracysmilie in reply to tinkey]

Hi Tinkey, thanks for the reply, I have been referred to a gynaecologicalist, I have had a Laparoscopy, they did not find anything, I was going for a year as they were doing different tests, they didn't find any traces of endometriosis. I have tried all the medications possible. I found this medicine called Gravel, this is for nausea, it helps a little, but I still vomit and you cannot get it here (typical lol). I am still going to see if I can found something to stop the vomiting.

The Doctors did say it is because my hormones are unbalanced and having a child (just like you said) may cure it. Well I might have to test this one out lol. I might get a second opinion from another doctor to see if there is any different advice. I also thought of going to a herbalist, but I know I still have to be careful of any other medications.

[tinkey in reply to tracysmilie]

I tried many herbal alternatives when I was younger, with no luck. However, I have recently started acupuncture which has helped ease pain and fatigue. I don't know whether it can help with periods, maybe worth a look? I do hope something helps, I remember only too well the misery this causes. I now have the mirena coil, which has helped a lot to reduce the blood flow, but I still get periods every 3 weeks and bleed for 10 days.

[tracysmilie in reply to tinkey]

Hi Tinkey,

Thanks I will check out the acupuncture to see if they have any for period pains and vomiting. I will take a look at the herbal stuff as well as I have never tried it.

I tried putting it in, but my cervix is tilted and the doctor could not put it in, I was in so much pain, I told him to leave it.

My period days was 3-4 days, now it last for 7 days. Today I am going back to work, I had to take 2 days off each month because of this. Even my Mum can't believe what I go through each, she said it like I am in labour lol, it feels like it lol.

I really appreciate your advice, I will do some reseach. Yeah I hope I find something soon :). Have a good day!

[misty14]

Hi Tracey

You shouldn't have to suffer like you do at period time. Just a thought one of my Rheumy Consultants said to me that Lupus symptoms always worsen at this time and they can up your medication to cover the worst days then bring it down again. Hope you get help soonX

[tracysmilie in reply to misty14]

Thanks Misty14, I will try this to see if this helps. I hope I find something soon too. Do you have any problems with your cycle?

[misty14 in reply to tracysmilie]

Hi Tracey

I always had a flare of Lupus Symptoms before my period starting hence the advice from my Consultants. Nothing like you though and then suddenly 5 years ago they just stopped and I'm young yet for the Menopause. Possible cause the steroids, don't really know and they could suddenly return. One lot of grief less !. I do hope you get some much needed helpX

[Barnclown]

Am vvvv much feeling for you. My version of vvvv similar period problems started in my early 20s. The diarrhoea, vomiting, excruciating pain etc were a monthly nightmare, beginning well before my flow actually started.

I conscientiously tried all the lifestyle management tricks and alternative treatments available at the time. With no success. I was desperate. The extreme nature of my symptoms gave my gp no choice but to prescribe something strong: the NSAID mefenamic acid 500mg (trade name ponstan forte) This was way back in the late 1970s. I used to take the first tab at the vvvvv first hint of symptoms....mefenamic didn't totally stop symptoms developing, but it did take the edge off most all the dreadful aspects of my version of this period problem.

A bit of background:

I now know that I had & have endometriosis, but my impression is that many of us tough out living with this dreadful condition undiagnosed. The endometriosis health unlocked forum is wonderful. I'm told endo is probably the main cause of my period problems. Mefenamic is helpful to many endo patients. But I am also a DES-daughter born with typical internal reproductive organ birth defects due to exposure to the artificial oestrogen DES in utero for months in 1953. I was diagnosed as an infant with lupus, but my mother never told me. My gyn thinks DES exposure is probably the main reason for my infant onset lupus & endo developing.

Also, mefenamic acid is THE only NSAID that works for me at all...for any aspect of the inflammation in my body anywhere. I only found out about my early lupus diagnosis just over 3 years ago. So, I've been coping without systemic medication for lupus all my life, with only intensive lifestyle management, alternative therapies, and NHS emergency treatment, often inpatient, as & when , plus long term prescription of various virtually ineffective NSAIDs + analgesics. The ONLY NSAID that really helped me, though, was mefenamic! And it helped with both my period problems & my volcanic UTIs & my migraines...so, I am vvvv devoted to it. But when my lupus was (re) diagnosed in 2010-11, I discovered that the mefenamic leaflet advises SLE patients to use it with extreme doctor supervision....so my gp has me take a PPI alongside mefenamic (and I never take it on an empty stomach). It is SO EFFECTIVE that I dread ever living without it, and my doctors all respect this.

Of course, I have never stopped conscientiously lifestyle managing my health conditions: anti inflammatory diet & nutrition, supplements, exercise, meditation, Alexander technique are all vvvv important to me, but equally important are the daily prescription meds that have proven they really really can help! And now I'm 60, in relatively good shape, I'm told, all things considered....

My reply is quite long, but I hope something in it can be of some help to you....and I hope you'll let us know how you get on

XO

[tracysmilie in reply to Barnclown]

Hi,

Thanks so much for advice, this is so informative. I have tried Mefenamic, this did not work for me, I still vomitted, diahorrea and had very bad excruciating pains.

I am glad I am not the only one that suffers like this. I thought I was abnormal lol.

I have changed my diet, I am eating more healthy and trying to exercise and lose some weight, which seems to help.

I was taking some supplements but stopped, I am going to start back taking them. I also tried a juice diet thinking it was good for me and I could lose weight at the sane time, well that did not work as I needed something solid in my stomach to soak up the tablets. I will try anything I can to help, as long it does not trigger off a flare up.

I will keep smiling

[Barnclown in reply to tracysmilie]

That's the spirit! You'll figure this out: it's good you're trying things one step at a time. Take care! XO

[tracysmilie in reply to Barnclown]

Thanks you take care. If I found out any interesting updates, I will post it up

[tracysmilie in reply to Barnclown]

Thanks you take care. If I found out any interesting updates, I will post it up

[misty14 in reply to Barnclown]

Hi Barnclown

As if you haven't had enough to deal with over the years!. So cruel to have endometriosis!. I used to take Mefananic Acid and found it a good NSAID. X

[Hidden]

Your doctors should be able to organise an anti sickness injection for you, this would enable you to take some pain relief. Go back and request this, the district nurses could visit and give you more as required.

Good luck in finding an answer to this awful problem.

[tracysmilie in reply to Hidden]

Thanks so much got your advice, I didn't know that I could get a injection, I thought they only administer that in hospital, so good to know.

I will ask my doctor and see what he says. Thanks

[Hidden]

I really hope your Dr is helpful, I was a nurse, so I know at least the surgery nurses can help, good luck.

[Hidden]

Wow..sorry to read this sis..hope u better now..my sister is lupus sle she hasn't got her period in 5 months since she have lupus..and i don't know if its normal or in times she gonna have it back