Hello everyone. I was wondering if any of you have had trouble with your reproductive system since being diagnosed with lupus? Over the last two months I have had severe cramping that lasts three of the four weeks of the month. The only relief I get from the cramps is the week after the ending of my period. When I spoke to my doctor he sent me for ultrasounds. When he called me with the results he said that when I saw him next week we would discuss being set up with a surgeon. I was a little shocked as I am only 38-years-old though I have been unable to have children since I was 22 due to a tubal ligation. I know that not every symptom is associated with lupus but in learning about the disease after my diagnosis in January it seems that lupus can effect any organs. If anyone has any knowledge or experience regarding this, it would be greatly appreciated.
In my case I started going through premature menopause at 32. My youngest was born (after 6 years of trying) when I was 36, despite not having had a cycle in almost 10 months when I got pregnant. After I delivered I had a few sporadic cycles and by 38 I was in full blown menopause. My hormone levels were as high as my mom’s! I was so thankful I chose to have my children young otherwise I might not have had any. I still keep a non-hormonal IUD in place just to be safe but I’ll have it removed soon. I hope they can fix whatever is going wrong with your uterus. Those kind of issues are no fun. Gentle hugs, Annemarie
Hello yes I am 45 now when I was 16 my Dr thought I had endometriosis but it turned out I had ovarian cyst so when I was not having my four kids I was on the pill needless to say I had fibroid cysts they put me on the pill and they went away. Then when I was 40 pregnant with my last daughter I developed a nadty uti and was given a high dose of cipro and she has some signs of lupus. Specialists I have been too think birth control and cipro caused my lupus who knows but now I do have endometriosis lol and had a partial hysterectomy and bladder lift in 2009 because I lifted heavy boxes at work and did not win workman’s comp case. So now I go through menopause too lol good luck
Could be gastrointestinal or bladder or ovaries or endometriosis. I got them all. I had ovarian cysts and endo and bleeding badly after childbirth so I had to have total hysterectomy due to ovarian cysts on both sides. So sorry for what you're going through.
Could it be te IUD?
I have suffered with infertility for years, including two life threatening ectopic pregnancies which ruptured and I bled internally. I have wondered if there is a link between my fertility problems and lupus. FYI for all the ladies, my lupus doc at JHU advised NO birth control pills, as hormonal bcp (estrogen) can activate/flare lupus symptoms.
My daughter, who is now 25, has not had a "normal" period for many years. Shortly after she started menstruating, her periods became VERY heavy. What I consider to be her first symptoms of Lupus started when she was 17. Her periods pretty much stopped by the time she was 20. This has been brought to the attention of her rheumatologist but aside from looking at her blood work nothing has been done so far.
This is, of course, upsetting to her because she'd like the OPTION of having children at some point.
It sounds like most of you were able to experience motherhood before that door closed on you.
What does her gynecologist say? That is the doctor she should be talking to. When i had an unexpected cycle after two years of not having one it was my gynocologist that did a biopsy to check for cancer. Rheumy’s typically don’t deal with the reproductive system even if it’s related to lupus. In my case it was the lupus that caused premature menopause. It could be from so many other things. Btw, just because she has no periods does not mean she isn’t fertile. I found that out the hard way…lol Best wishes, Annemarie
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concerned mom said:
My daughter, who is now 25, has not had a “normal” period for many years. Shortly after she started menstruating, her periods became VERY heavy. What I consider to be her first symptoms of Lupus started when she was 17. Her periods pretty much stopped by the time she was 20. This has been brought to the attention of her rheumatologist but aside from looking at her blood work nothing has been done so far.
This is, of course, upsetting to her because she’d like the OPTION of having children at some point.
It sounds like most of you were able to experience motherhood before that door closed on you.
I hit premenopause at 34. After extensive testing, every possible reason was ruled out with the exception of lupus.
Two of my specialists have told me that I will likely experience pre-mature menopause and I am still waiting. I am 41 years old. I do think that my periods have gotten worse since lupus onset and I believe the fluctuation of hormones affects my type one diabetes, too. Like you, I try not to think of every physical symptom as being related to lupus or other autoimmune disorders, but the truth is, most of the time, if it is pain, it is lupus related. I don't have any real answers that will help you, but please know that I will be thinking of you and hoping that you find answers and comfort. Feel better.
JDT
Hello
I hope you are doing well. I wanted to tell you a bit about my story because I agree that lupus definatly affects the reproductive system! I was diagnosed with fibromyalgia at. 13, and at 18 I was diagnosed with lupus. My husband and I with the advice of my doctor decided that due to my illness the best chance for us to have a child world be sooner rather than later. After a miscarriage and a still born at 5 months my doctor made sure the next pregancy went differently and it worked! A calm very stress free environment with very close monitoring. My daughters name is Abigail and she is the light of my world! She is 3 years old now and I am 23. My husband and I are both full time college students and yes life with a toddler is a bit crazy but I would not change a thing! But that isn’t were our story ends oh no lol! During the time when we were trying we worked at a daycare for underprivileged children which is where we first met our other wonderful daughter I will be omitting her name per her request she is 5. I love both my daughters equally husband loves both our girls even though it wasn’t the path we expected to go down we first met at 18 but the journey has been better than anything I could have imagined.
Could be endometriosis and they remove the uterine tissue that is outside in your body by laser. You do not need invasive surgery to remove it and i am a extremely bad case. They still have not removed and in my late 50's though past menopause i still can get cramping on occasion.
My cramping was so bad that monthly i would pass out from the pain until I went on BC pills and Motrin was invented or prescribed finally. Have you tried motrin for the cramping?
But as to lupus causing issues, sure it can since connective tissue is about everywhere in our bodies. I wonder why they did not tell you specifically why you are having surgery or something i am missing. I hope it is something fixable.
I would like to say thank you to all of you that have replied and given me some insight. I saw my physician yesterday and what was found on the ultrasound was extremely large cysts on both ovaries. I am being referred to a surgeon to have them removed in the next few weeks.
Glad they found the cause. I had that too. They were as big as grapefruit. They had to remove the whole ovaries, not just the cysts, I hope you were told that. No more babies unless you still have your uterus and can do artificial insemination. If only one of your ovaries will need he surgery, you could be alright as far as babies go.