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Lupus, APS, arthritis, UTIs, miscarriage, endo, related?

(7 Posts)
Aahleigh1989 Fri 01-Apr-16 00:47:45

Hi, I'm new to this but was hoping I could get some advice!

From the age of around 6 I started getting UTIs as regularly as every other week, on average I suffer from around 10 a year now, I have had 3 endoscopys which all came back clear.

I got pregnant first time at 18, which ended in miscarriage, I had 8 early miscarriages following this over 9 years, after the 3rd loss I was diagnosed with lupus anticoagulant. 2 years ago I fell pregnant again, I was diagnosed with anti phospholipid syndrome around 12 weeks pregnant. Starting around 14 weeks I started with SPD and was unable to walk unaided by 18 weeks pregnant. I was induced at 39w4d and she arrived at 40w, I had epidural and she was born via forceps.

The spd never left, I have had it for nearly 2 years, I had injections in my sacralic joints and am now able to walk unaided but still have a lot of pain.

I get pains and kiss of movement in both wrists from time to time, then it goes back to normal. I also have a clicky jaw which kicks from time to time. My dr now believes I am developing arthritis.

I have always caught bugs, colds, got food poisoning etc, if it can make you I'll, I will get it.

when my daughter (bottle fed) was around 6 months old, I started bleeding and didn't stop for more than 3/4 days for almost a year, with this came severe pelvic pain, especially after sex. I have since had a smear test which came back clear and a ultrasound which detected 24 follicle cysts on an ovary, with that and blood tests I was diagnosed with PCOS. Which still doesn't explain such severe pain.

Last week my husband and I got married, the day before we.. You know 😳 And I actually ended up in hospital because the pain was so hurrendously bad! I was on a cocktail of drugs, including morphine, oromorph and diazepam, I was only discharged to get married and had to go straight back 😓 I am now waiting for a laparoscopy to look for endometriosis and adhesions.

I think I have painful periods but as explained, I am so unwell on a daily basis it's difficult to keep track of what is causing which pain if that makes sense. Could all of this be connected? Could one condition be causing everything?my dr believes one illness is causing all my symptoms but can't work out what, when he said this I was in far too much pain to ask him to elaborate. Has anyone had experience of anything similar?

I realise this all looks like a post just to moan, I hate that! I'm just looking for answers, maybe someone similar.. So sorry for all the whinging but can anyone relate??

Thanks in advance smile X

LivingInMidnight Fri 01-Apr-16 09:40:24

You've put lupus in the title, but from what you've written you just mean lupus anticoagulant I think? The lupus anticoagulant, APS and miscarriages are related obviously, I'm assuming you're being treated for that. Has lupus (SLE) been ruled out?

Diagnosis is a waiting game, unfortunately. flowers

Aahleigh1989 Fri 01-Apr-16 14:18:55

Yes I meant anticoagulant - sorry, misleading 🙈 I don't receive any treatment for any of these, should I? I woke up this morning and my wrists are stiff again 😩 All of this just feels never ending, the past 2 years it's getting worse and worse, which breaks my heart as I just want to be healthy to spend time with my daughter 😓

LivingInMidnight Fri 01-Apr-16 14:28:24

Yes, you should be on blood thinners! shock

I was just wondering about lupus because it can affect menstruation, although I'm not sure it's as severe as what you've posted.

I'm a bit concerned now that you aren't getting enough support from your dr. Has he made referrals for you? I would ask for a rheumatology referral for your joint issues to be honest. I think trying to find one illness that covers all of your symptoms is slowing down your treatment.

LivingInMidnight Fri 01-Apr-16 14:32:23

Have you at least got something for the pain?

I'm still sitting here like this -> shock

Aahleigh1989 Fri 01-Apr-16 22:16:52

I am on MST, oromorph, paracetamol and tramadol, though I hate taking it all, I have omeprozol for heartburn too. I was on blood thinners whilst pregnant and have them after operations. Other than that I don't have any. I see a pain specialist, physio and gynaecologist at the minute. I just fee as though it's getting worse by the week, could I just be so impossibly unlucky to have all this going wrong at the same time?

LivingInMidnight Sat 02-Apr-16 10:27:15

Most people with APS take blood thinners all the time, even if it's just aspirin. I only have lupus anticoagulant and I'm supposed to take aspirin. It might be worth asking why you're not on them.

You should take the pain meds - You're in a lot of pain! Has the physio looked at your bad joints?

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