i was wondering if anyone has experienced fertility issues since being diagnosed with lupus. i am 32 y/o woman and have had 2 wonderful healthy children ages 9 & 12, since being diagnosed in 2008 my husband and i have been trying to conceive with great effort with no success. to me it seems to be logical but my rheumatologist doesnt think its likely. we have now progressed to infertility doctors/ testing and its definately not my husband. the fertility doctors tell me that my hormone levels are not good, too high and im considered to be in premature ovarian reserve. anyone out there with any advice or info i would be very greatful. thanks!!
I can relate to this. I'm only now seeking a diagnosis, but I have suspected having Lupus for at least ten years, off and on. My son is twelve, and when he was a year and a half, I went off the pills to try for a second child. I have not taken any sort of contraceptive n all that time, but have failed to conceive. We hadn't gone too deeply into testing what was wrong, though I was told at one point that my hormones were just timing things slightly off, and that two particular things taken at JUST the right times of month would likely get me pregnant within six months.
Unfortunately, immediately after that our insurance played a dirty trick on us and dropped our coverage. I never got the chance to try out his suggestion. I have a sneaky suspicion it wouldn't have worked, though. By now, I'm not so pressed for wanting another child, and I have worked my way through grief and frustration, so that now I'm okay with only having the one child.
I too suspect that it is related to my other symptoms of Lupus, but of course there is no proof of this. To be honest, with all that they do NOT know about what Lupus does to the body, I wouldn't be surprised if they eventually find some sort of link. ::shrugs::
I wish I had some advice for you, and I wish you luck for conceiving. For me, it was a matter of simply having to accept the inability. That acceptance isn't something I'd wish on anyone else, however, unless it truly did become inevitable. ::hugs tight:: Hang in there, and hug your babies!
I too was unable to conceive a second child when I tried. I went my whole life after the first one never using birth control except for the first year or so, and never got pregnant again. I think that in my case anyway, that I have had Lupus symptoms most of my life, although was diagnosed in 05.
I had 3 children in my 20's. In my late 30's my new husband and I tried several years to conceive, we also had two miscarriages before our baby boy was born. I definitely think lupus can effect fertility.
Lupus is associated with higher (but still very small) risk of premature ovarian failure… It sounds like your doctors identified some signs you are having hormonal changes. Fertility specialists aren’t very likely to know much about lupus, so bring up what they found with your rheumie and ask if further exploration of what they found about your ovaries is advised. Fertility experts should know that drugs like cytoxan cause infertility, but by damage to the eggs rather than hormonal changes. I don’t think there’s much data to say either way if lupus itself or the medications to treat it cause a higher rate of early ovarian failure, since it’s still such an uncommon occurrence. Doesn’t hurt to start asking questions, but they probably won’t have many answers other than watching it for a while to see what’s happening.
Keep in mind that hormone levels are thought to be a a factor in lupus development and symptoms (because of the much higher incidence in women, exacerbations we face while on birth control pills, reduction in disease activity for many after menopause…) They don’t know very much yet about how they are related, but it seems higher estrogen worsens symptoms. It may be that work on your hormones can help your lupus, but making changes might be a risk of making it worse! I’m guessing you are pretty stable in a remission or with few bothersome symptoms if you are planning to conceive, so tread lightly with any hormonal treatments. Postpartum flares are common, but having a return of disease activity before the pregnancy is pretty risky since its tough to treat you without harming the baby (plus the postpartum flare would be even worse!) I don’t mean to sound like “don’t do it!” out of fear; I’m facing my own concerns about childbearing in the future, probably when I reach the age you are now, because I’m 25 and single, not even dating seriously (my disease is too active right now, plus my adjustment to the new diagnosis and changes to the course of my life, to even handle the emotional pressures of a relationship!) It’s a scary thing for many of us, and I know the biggest fear I have about lupus and motherhood is not achieving enough stability to be a mom even through adoption! However, that helps me keep my focus on getting better now instead of adding too much extra stress by searching out a husband (when I meet a good prospect I do my best to take things slow or even ask them to check back later when I’m ready to handle it. It can be tough but I know it’s essential to getting where I want to be in health and happiness.)
So I would say to guard a current state of good health carefully, especially while you have other children depending on you, and proceed knowing that another child may not work out for you yet that there may be other blessings to find on the life path you might end up stuck with. It’s really hard being deprived of as many choices and possibilities as others typically have, but it’s really crucial to remember to find and savor the rewards of being in the situation we find ourselves in (for example, if you can’t conceive again, the ways you will have more time, energy and other resources with your older kids and the chance to be a youthful grandma that will probably have many more years of good health than a lot of grandmas without a specific disease!) It can be so tempting to wish we could have it all, the example above plus another child now, but that can be really counterproductive to enjoying what you do have. It comes with a lot of grief, which is totally justified and welcome on this message board even if misunderstood by everyone else, but one thing lupus can actually cure us of is the constant pursuit of more than we have that leads to do much unhappiness and unfulfillment so common in the western world today.
Wow, that got to be a really big philosophical point, but I sure love how discussions here can go “there” while sharing information. Since I’m early in the process and having a really tough time, I tend to be thinking big instead of small about things, but I also have my details to navigate… Currently whether I can handle starting in the graduate school program I was just accepted to, and if so, carry the risk of so many loans! Best of luck with everything, and I hope you’ll keep posting about your progress… Since there isn’t very much data about these issues, it can be really helpful to know each other’s personal experiences!
Brynn
Definitely! I had 3 miscarriages and almost lost 2 of my 3 babies. And the last was twins! I went thru midwest women’s health care. They made me get tested to verify my levels weren’t in a flare before I was even allowed to start iut. The lupus caused shut down of one of my placentas and almost lost a baby. I had discoid rash thru whole pregnancy and almost died. It was terrible-but the miracle of each little movement of 2 babies was worth the journey for me. I was told I could never have another baby again or it would kill me next time because the lupus got so severe. Just be very careful. Dr. Gregory Starks was my dr and he is well known as one of the top in his fields.
Hello, hope that things get better for-keep your Faith strong!!! …Beverly L.
I only have one child and I want more. It often make me sad but husband encourages me to be thankful for the one beautiful intelligent daughter we have. I have to stay healthy so I can see her grow to be a wonderful woman. I want to be there.
I kept miscarrying and was high risk ...which most are who have lupus. Though it sounds like now many have had children with little or no issues....when i was trying the belief was not this and most women i knew with SLE did not have kids or had one at the most.
Also with SLE there is chance that in last trimester you have to pick between your life and childs. We are one of those late term abortions to save our lives possibly. After I miscarried in 2nd trimester early...but i could feel baby kicking etc..even though i had promised my husband i pick my life..well i did not know how i could live with myself if it came down to that and all my doctors, OB and Rhem told me that it was very real possibility with my history so we stopped.
I was able to help raise my nieces...i got them weekly all throughout elementary school and that helped but now that they are adults etc... i do have regrets i did not have my own child.
BUT on the other hand....i can remember one of my nieces who just could not see beyond what she wanted..just who she is and she got furious more than once when i had to say sorry i am too sick today to drive that far or be in sun all day etc...and that made me realize at times maybe it was good thing i did not have a child.
I say this...as i do to all about having a child with chronic illness...read a book by children whose parents had lupus and parent who had lupus and raised a child or children. Really opens your eyes about how much it affects them in way you never thought about.
Also...my first rheum said to think first, long and hard why you really want a child...procreate? If that is reason...he flat out said to me, best you do not. I agree...so did not bother me but i get how doctors see ..as one said to me, that bad parents are having all the kids lol! she really pushed for me to do all fertility etc tests... i also had endometriosis which of course made it hard too.
But as my niece says....millions of children who need to be adopted so that is always option but if you are disabled by your diseases than odds are you will not qualify which makes sense...but also maybe then you should think very long and hard about what really is best for you and your health. It does bring up a lot of pros and cons....and bottom line i think should be what is best for the child in the long run.
Hello bre,
Lupus can actually cause a woman from not conceiving and i'm 44 and one of them but i am pleased you have 2 children otherwise.
bre i think you'll find this link very helpful :)
http://www.lupusuk.org.uk/latest-news/62-the-importance-of-planning-pregnancy-in-sle
THANK YOU EVERYONE FOR YOU RESPONSES AND ADVISE IT HAS BEEN VERY HELPFUL AND THOUGHTFUL..MY BEST TO ALL OF YOU : )
Bre,
I am so sorry that you are having difficulties. I had my first son with virtually no problems, however my second was born 3 months early. Since then I have had 2 miscarriages and had read many times that not only is it difficult for a woman with lupus to conceive, but the odds of carrying to term are very low. It would be considered a "high-risk" pregnancy and you would need to have an Ob/Gyn that was trained for that.
Best of luck and please check out the link that Tez_20 put up. She is a font of wonderfully useful knowledge.
XOXO,
DeAnne