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Do any of you ladies suffer from both Lupus and Endometriosis or even PCOS? If so, what are some of the symptoms? How long did it take for you to be diagnosed and what treatment route did you take?
@A MyLupusTeam Member I'm currently going through something similar. Not as severe as you're describing, but I have been having consistent cramping in my right ovary and occasionally my uterus, and I had went several times to the OBGYN who was convinced it was just a lack of ovulation from my IUD, since my right ovary was enlarged though no obvious signs of cysts.
If you're on medications for Lupus, you can come down with infections such as BV very easily, so I wouldn't let them stop there as a source for your pain.
For me, I had a ureaplasma infection (also easier to come down with if your immune system is compromised - not a test they typically do in a regular pelvic exam) and after I pushed for a hormone panel after treatment, that also came back abnormal which may suggest PCOS (will find out next month with more testing).
If you're in pain, don't let your OBGYN chalk it up to menstrual cramps or quit searching at a BV infection. Keep fighting the good fight and don't hold back in reiterating just how abnormal this pain is for you, as well as any other symptoms.
Hope you find your answers soon!
I would get the testing for PCOS. Unfortunately there’s not really a test for endometriosis. They go off of symptoms and can only confirm on diagnostic laparoscopy
@A MyLupusTeam Member I have endometriosis. Had my first laparoscopy in 2012 and my second this year. I had to BEG for the surgery this time around, because both my GYN and fertility specialist agreed it was highly unlikely my endometriosis recurred due to being on continuous estrogen based birth control pills since the last surgery. Needless to say it DID recur and they found it in more places this time around.
Bottom line, you know your body and if something seems off don’t settle until you feel the problem has been addressed. Also, since surgery is the only way to diagnose endometriosis, likely they will try to scare you by saying surgery can cause scar tissue (which is true) and that scar tissue can make your pain worse (not typical) and surgery could potentially effect your fertility (low risk, but so can untreated endometriosis). I wish I had recorded the conversation of them trying to talk me out of it. If you’re in pain like I was the risk of an outpatient surgery is nothing in comparison. I am pain free now, btw and I was pain free for approximately 5 years after the first surgery.
Best wishes
I do! I was diagnosed with Lupus almost 10 years ago and recently I was diagnosed with Endometriosis. I'm carrying 3 big cysts now (one is 9 cm). well I didn't have a killing abdominal pain at the beginning and I visited the doctor because my symptoms made me think I had some kind of vaginal infection or sth but then turned our it was Endometriosis, after an MRI scan.
usually Endometriosis patients experience an intolerable abdominal pain specially at the time of menstruation. after it's diagnosed, depending on the size, the doctor may suggest a removal surgery (depending on your age I think, because this whole Endometriosis thing might reduce your chances of getting pregnant) or hormonal therapy/medication (which must definitely be consulted with your Lupus doctor).
I'm new to this too but I hope this is helpful for you.
Here is some information about endometriosis, PCOS, and their connection to lupus:
Endometriosis and Lupus
- Endometriosis: A condition where tissue similar to the uterine lining grows outside the uterus, causing pain, heavy bleeding, and spotting between periods
- Connection to Lupus: People with systemic lupus Show Full Answer
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