I'm a newbie,
I was dx earlier this year with SLE. The past few months I have ahd a lot of pain in lower pelvic with abnormal bleeding(between irregular monthly cycles). I was first told it was stress. I had an US done and a 5cm cyst was found in ovary. I was told to wait and see by my primary. The bleeding is worse. My hormone tests come back normal, yet I have a mustache (darker than Justin Beavers') and other facial hair. I have lost alot of weight and I get this "lump in the throat feeling at times. (thyroid us normal). I also experience swollen lypmh nodes and I sometimes smell metal. ????
I recently saw an OB and he informed me that he was looking at cancer. Needless to say, I broke down. I have been researching so much on the net about ovarian cancer. The biopsy came back neg. <<Thank God, yet RBC's are breaking down) Than I came across ovarian cyst and lupus. My husband specifically asked the OB Dr. can the cyst and bleeding me associated to Lupus. he replied, "No."
He does want me to do a Hysterectomy and treat me with a low does of hormone therapy. We did ask him to check endometreosis as he is doing the surgery.
Has anyone with Lupus experienced this? Has anyone had excessive hair growth, (the change) yet their blood test comes back normal? Is there something that we're missing?
Any help or guidance will be helpful.
Originally Posted by Trinity
Hello and welcome. Might I ask how did they do a biopsy? I've had several cysts as well as a benign tumor in one of my ovaries. Have you had a CA125 test done? If it is in the ovary and are still planning on having children, you can have just the one ovary removed. You will probably go through a mini menopause after the surgery as your body adjusts to having just one ovary, but it will even out.
Dealing with Lupus alone is enough, but then the added pain of the cyst just makes it worse. I know I have days when it is a toss up between which hurts worse. (((hugs))) I don't know about any link between the two, but I'm sure if someone does they will come along and post. A lot of women have cysts and only find them incidentally.
John's Hopkins has a great ovarian cancer message board. http://ovariancancer.jhmi.edu/ The ladies on there are a wealth of knowledge and were quite helpful to me when I had my tumor. Please keep me updated.
The did the biopsy vaginally, he pulled a sample from the endometrium. ( he said it was too thick). It hurt like a dickens. The ovary was found by an Ultra-sound. I cant have children. I had an etopic pregnancy a few months after my son was born 16 years ago. I told them while they are in there to do a tubal ligation. What irritates me is that I have this facial hair and hair in other places ( i have to pleck the face and shave stomach area) which means the hormones are off. yet, my blood tests come back normal. I dont know about the CA 125 test. I was rummaging through all of my blood work since January and I dont see anything like that. Is this something the OB has to do?
He is talking a complete removal. He cant explain the weight loss( in a month...15lbs) or the hair loss. I reallly cant eat and so on. I am getting tired of all of the Dr.s and the attitudes that follow. Its in your head. In the mean time I am bleeding everyday and its getting worse.
I have been off work since the 5th of Sept. and I would love to get back to work soon.....Short term barely bays the bills.
Thanks for your reply
the biospy was done vagianlly. they took a same from the endometrium. The cyst was found on a ultrasound. I agree about the pain. Right now, the bleeding is worrisom and the attitude that follws from the Dr. isnt helping. Im awaiting a call to see when the surgery is scheduled. I had a tubal ligation when my son was months old due to an etopic pregnancy. I am concerned about the estrogen therapy becuz the risk of cancer. Im wondering if Lupus will cause abnormal test to appear normal. My hormone tests come back normal and yet I have substantial hair growth, a lot of wight loss and hair loss.
frustrated with Dr.'s
Thank you for the reply
That is a pap smear or a cervical biopsy. They can check the cervix and get a sample for testing vaginally. They can't however, get a sample of the overies vaginally. Believe me, I have had female problems most of my life. I had biopsies come back irregular for years. I had a cone biopsy which meant that they removed a cone shaped piece. 8 months after my daughter was born I had to have a hysterectomy. I only tell you all of this to try and let you know that I understand.
Originally Posted by Trinity
If it were me I would get a 2nd opinion. I think it would be fore the best
I have to agree w/ Tgal - I would def get a second opinion. Your endometrium has nothing to do w/an ovarian cyst. The only way to test the "cyst" is to remove it. The hair loss and weight loss could be due to the Lupus or if, heaven forbid, it is cancer that could cause the weight loss. I know a lot of us women have irregularities w/our cycles, but typically it is due to the meds we are on.
The facial hair symptom makes me think of something that my daughter mentioned. She has Polycystic Ovarian Syndrome, and that is one of the symptoms.
She's trying to get pregnant, and having a tough time.
It might be something else to ask about.
Thank you for your response. I am getting a second opinion, my appt. is set for tomorrow. According to Dr. the vaginal biopsy was to see if I had cancer. The US discovered the cyst. I sincerely hope the new Dr. will be more tentaive and be proactive and at least listen. I'm not sure if Lupus has a part in this. I till dont have an answer as to why I am bleeding.
Again, thank you.
I have only been diagnosed with fibro and raynauds. Possible Lupus but tests aren't strong enough. Anyway, I have had ovarian cysts all my life. There was never a time that I had a US and didn't have a cyst. One was over half the size of my ovary. Every time, they went away on their own. I have severely painful periods. I have hair in unwanted places and my pms is not pretty. I have had many biopsies and all turned out fine. When I had abnormal bleeding they found my uterine lining(endometrium I think they call it) was too thick so they cut out the lining and I was fine after that. By the way, I am 41 now and the hair thing started when I was around 35. My mother didn't start having issues until she was 60. I understand. I just don't know if any of this stuff is linked. By the way, my gyno's wanted to do a hysterectomy on me many times and I refuse. So far so good. I really want to keep my ovaries until it is completely necessary to remove. My research has found that the ovaries are very important and removal is only last resort. Good luck.
I have Endometriosis and I get ovarian cysts all the time. I've had horrible periods for 16 years until I decided I had had enough and my gyno put me on the Depo Provera shot. The pain was excrutiating, I felt very sick every time I had it, VERY heavy bleeding, and I would vomit, feel dizzy, faint, I couldn't eat or walk. Since I have been on this shot I have had NO PERIODS, and NO PAIN, and NO more Cysts. I too want to keep my ovaries until I no longer need them, that is why I am doing this until I have ready to have a couple of children, and then I want a hysterectomy done. I also get mustache hairs and some chin hairs, and everything that is wrong with me is not cancerous. I am only 24 (25 in a few weeks).