Could all this be related? What to expect from positive diagnosis?

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 loss 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 :) X

3 Replies

  • Also, I have hurrendous heartburn, possibly caused by ulcer, I'm on 3 omeprozol and a bottle of gaviscon a day.. 

    Man I'm falling apart!! 

  • This your story sounds so similar to mine I had my first lap in 2008 after suffering uti all the time bled for 3 months solid on depo injection put on tablets to stop bleeding suffered horendious pain had ultrasounds all clear the list was endless had scan on bladder all clear still suffered so when done lap said I had small amount of endo removed went fine up till 2012 pain came back again put on pain killers met my husband told suspected endo was back again so me and husband agreed to try for a baby and fell in August 2012 had my son in may 2013 after that suffered pelvic pain severe back pain constipation and lose bowel movements heartburn two periods a months burning pain down my leg hip pain just thought body going back to normal as had my son emergency c section but when I kept getting all those symptoms went back to my doctor oh just period pain take pain relief was like this up till August 2014 and woke up in agony went to doctor and she agreed to refer me to gynaecology on three occasions ended up in hospital was found to have 3cm follicular cyst on right ovary but didn't explain why I was in agony sent home with pain relief then ended back in got rude gynaecologist saying there was nothing the could do sent home stronger pain relief and third time kept me in for two days after doctor said he wanted full investagstion and put on letter suspect endo to which the consultant said oh we don't think u have endo I said well if that not the case want answers said something is causing this and want to know what to which he said oh we don't know I said ur the specialist u should know I think I need surgery finally got my appointment through for gynae and felt after all this time I was listened to by a lovely gynaecologist she said we suspect endometriosis to which going to send u for a laprostopy had that in January 2015 to which they found endo on my womb and pouch of Douglas was stuck to my womb I still have on going pain but seeing professor in pain management on 7 different pain relief to manage my pain see gynaecology on 7th so hopefully get some answers hope u feel better soon and take care xx

  • Hi - APS is an autoimmune condition, and so an immune system disorder, associated with miscarriage risk so that ties in. It involves antiphospholipid antibodies that increase blood clotting. Lupus anticoagulant also binds to phospholipids and increase risk of blood clotting. The clicky jaw may be temporomandibular joint dysfunction (TMJ) about which not much is known but it does seem to be possibly connected with other syndromes like fibromyalgia, that in turn is associated with autoimmunity. Endo is an immune system condition with proven autoimmune characteristics and frequent infections and allergies are associated with autoimmunity. So you clearly have a lot of immune issues going on that sound to be underlined with autoimmunity and this can present with a vast array of symptoms. So it's unlikely to be one condition causing all your symptoms but underlying autoimmunity since you have one confirmed AI condition. Is your GOP not making these connections and are you not being seen by an immunologist? If not you need to be.

    In terms of the possible endo (that would tie in with your autoimmunity) it will be important that you do at least get this treated right and if you are in England I would strongly suggest you have your lap done in a specialist endo centre. Such pain with sex suggests a possibility of deep endo that won't be picked up in general gynaecology and you don't want to now find yourself endlessly chasing general gynecologists looking for answers because they have missed it. Click on my name and have a look at my post on how to find a specialist centre.

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