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2 Posts
Discussion Starter · #1 ·
Hi everyone,

I'm new to this site and in much need of some advice. I'm a bit confused and not sure where to start. Basically, I was thinking that I might have lupus but I have just received negative blood test results. I guess I want to just list the reasons why lupus was considered in the first place and I am wondering whether it looks to any of you like it still needs to be investigated or not.

I am 24 and have recently been diagnosed with endometriosis but this diagnosis only explains some of the symptoms I have suffered over the years and not everything. I did research on endometriosis and found that people with endometriosis are more likely to have lupus or various other conditions as well.

The surgery I had for the endometriosis left me extremely sick in hospital and my case was taken very seriously but no explanation was found. The surgery and the hormone therapy that I started also triggered symptoms I'd had before, lupus symptoms. I have read that if you have lupus, both surgery and contraceptives can cause a flare.

The symptoms I have had that seem like lupus symptoms include:

headaches/ migraines - these started and were most severe in my early
extreme fatigue - I was told I had chronic fatigue syndrome without ruling
out other options and this used to be such extreme fatigue
that I had to be on a disability pension, unable to work or
study for some time.
muscle pain - mostly in legs
joint pain - I get pain in the joints mainly on my left side, in my knees and
ankle and toes and in my fingers and wrist but no swelling.
sharp chest pain when taking a deep breath, coughing or laughing - this was severe after the surgery. Everytime it happened I thought this is full on I should see my doctor about it but I didn't. Could it be pleurisy, I am wondering?
hair loss - I lost a small patch of hair on my hairline which my skin cancer
specialist said looked like alopecia and i had previously had bald
patches before and I have a new patch now only about the size
of a ten cent piece.
mouth ulcers - no more than 3 at a time
nose sores - it feels like a pimple but on the inside of the nose so I can't see
skin - as far as rashes go I don't have the distinctive butterfly rash, i do
have a very red nose that gets redder from sun but isn't sunburn
because it only happens to my nose. I also get red patches on face
only mild though. On the bottom of my feet i have rather pink skin and
after I teach swimming in the pool for hours at a time I sometimes find
that the pink patches are bleeding. As a child I had allergic reactions
to grasses that resulted in hives and I was allergic to mosquitos which
resulted in excessive swelling. If i got bitten on my face I wouldn't
be able to open my eyes.
poor memory
brain fog

So yeah, I'm just wondering if anyone thinks it needs further investigation, for example, a referral to a rheumatologist. I'm wondering whether anyone has found that their blood tests were negative. My doctor did say that some tests weren't exactly normal, i'll have to try and remember which one it was.

Thanks for any help.

· Registered
6,939 Posts
Hello Annika,

I'm afraid I don't know anything about endometriosis and have a job even spelling it :hehe: but you defintely have a list of symptoms that warrant further investigation.

If you take a look at the criteria and alternative criteria posted at the top of "not yet diagnosed" you will see quite a few familiar symptoms there.

A lupus diagnosis is possible without positive blood tests even if it is rarer. I personally don't have either + ana (the general autoimmune condition screening test) or + anti ds dna (more specific to lupus). My bloods show up certain very specific things when I am very ill but even the rheumatologist had to look very hard before finding them and a GP certainly wouldn't have asked for those very specific blood tests.

Although I have only presented the malar rash once severely (it has been less present since starting medication) I was diagnosed through a skin biopsy that my rheumy ordered.

I think that a referral to a rheumatologist would certainly be worthwhile.

bye for now,

· Registered
4,351 Posts
Hi Annika,

Sorry to hear your feeling bad. I do have SLE and my Mum MS, my sister recently had surgery for endometriosis which turned out to be the most chronic case they have seen in this area!
She now 5 months on is generally feeling worse with many Lupus sypmtoms and is on Monday having chest x-ray, ECG and some bloods which see is hoping will include some auto-immune ones! If bloods show up any problems then her GP says she will have to see a Rhuemi, just hope its not the same one I saw (my sister lives in the same area as me). Endometriosis I have been told does have links with autoimmune! I think it will help her greatly that her GP knows there is a family history of auto-immune problems!

I will (if I remember) let you know her outcome, if you remember before me then please feel free to contact me! My memory is very hopeless most of the time!!!

Love Lesley

· Registered
22 Posts
Hello Annika,

I am a severe Endo sufferer since my teens (I am now 35). I had in total, 10 surgeries for it and my other gyno issues (incl. 3 laparotomies), I only have "most" of one ovary remaining.

When reading your post, I actually thought "hmmm" as I have many of the same experiences. I am still learning about this whole Lupus /MCTD, but as I have been told here, you need to see a specialist. Your symptoms are not ones you can ignore.

I really feel for you, as have been in your Endo shoes for a long time, and that disease alone is not an easy one to deal with, but with correct treatment it can be well suppressed. Are you pain-free with the Endo now? For me, the only treatment that truly works is estrogen suppression (I am permanently suppressed, using either Provera or an extremely low-dose contraceptive pill - no periods whatsoever). Not sure if they told you that estrogen is "food for endo"? Make sure they are taking care of you well.

I'm sorry you have all the othe things going on as well.. as if one is not enough, huh?

I wish you luck, and here's hoping both you & I will be "symtom free" and feeling good soon :)


· Registered
2,444 Posts
I think you should ask for
(1) a copy of the blood tests recently done (complete with reference ranges for "normal") i.e. get a lab produced copy and not a summary note from your doctor
(2) a referral to a rheumatologist

Your symptoms do certainly sound like lupus, it can take years for positive bloods to show up after symptoms in some cases. Some people never have positive bloods and only get diagnosed by seeing a very experienced rheumatologist who is a lupus specialist or through a biopsy of some sort (usually skin or kidney biopsy).

As for your chest pain, the one that occurred following surgery is probably due to the surgery itself if it was laparoscopic (where your belly is pumped full of air first). The pain is common following that type of surgery. The other spells of chest pain could be pleuritis (typically an extremely sharp pain especially when breathing in) or costochondritis.

Good luck - ask for the name of a good rheumatologist here (Find a Doctor) forum, or search through the site for names of good doctors in or near where you live.

· Registered
133 Posts
Hi Annika

I also share many of your experiences. I had several ovarian cysts, endometriosis, prolapse, miscarriages and a welter of other symptoms. I had a total hysterectomy 9 years ago with an instant menopause. (No HRT as I had had a pulmonary embolism previously).

I am sorry you have so much going on and I hope that you can soon start on your road to diagnosis.

Thinking of you.

Judi xx

· Registered
2 Posts
Discussion Starter · #7 ·
Hi everyone,

Thanks for the advice. seems lupus isn't exactly ruled out. forgot to mention that I suffer from much nausea and vomitting too, which could be endometriosis and medication related. not sure whether it's a symptom of lupus. The problem I have is that most of the lupus symptoms I have are symptoms rather than signs or only mild signs. For example, my skin problems are only mild, the bald patches are small. I feel silly mentioning these things because they're not the things that really bother me. I'm wondering whether these things would need to be severe for a diagnosis to be made, especially since my bloods were negative (i think it was the ANA titre that wasn't quite right but still not positive).

I much appreciate all your comments and stories. Thanks
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