I'm not sure how to phrase this question so....Has there been any documented evidence of sarcoidosis in the female reproductive organs?
I'm not sure how to phrase this question so....Has there been any documented evidence of sarcoidosis in the female reproductive organs?
I was told that it is very rare, however I have experienced and have read alot of women on this site have experienced miscarries. I had a hystorectomy last March, my uterus was full of fibroid tumors. Prior to that I had 3 paps come back with abnormal cells. Uterun biopsies. I just can't accept that sarcoidosis didn't have a hand in this.
I don't know but when I was first diagnosed my doctor asked if I had vaginal dryness so maybe so me aspects of it are related? Just a thought.
Thank you, Unique64 and SarcoidPrincess.
I've been spending quite a bit of time reading here at this site and thinking. It would seem that most of my odd unexplainable ailments can be traced back to sarc. I've been plagued by menorrhagia and even amenorrhea at times. I've seen several gyn doctors (and biopsies) and none of them have an explanation for this. I have a sneaking suspicion these problems are sarc related.
Thank you, all. Each and every one of you fine people that suffer so much yet post here whilst telling your troubles and helping others. I feel as though my eyes are finally open. So much is making sense to me now. This site and its members are amazing.
Love,
Jackie7
From the most recent literature review of sarcoidosis and its effects on different organ systems.
*******************************
Reproductive — Sarcoidosis rarely involves the female genital tract. Case reports have described sarcoidosis of the endometrium, ovary, or uterus detected during the evaluation and treatment of menometrorrhagia or pelvic masses. Systemic sarcoidosis, in the absence of significant cardiopulmonary compromise, does not affect fertility and does not increase the incidence of fetal or obstetrical complications. It will often improve during pregnancy, possibly due to increases of maternal free cortisol.
Sarcoidosis can involve the testes, and must be differentiated from testicular cancer and tuberculosis. Recurrent epididymitis due to sarcoidosis rarely can occur
**************************************************
Threw the male version in there just to be fair.
Essentially, sarc rarely effects the reproductive tract, but when it does it is identifiable on tissue examination, which is much more common in females than males.
Menorrhagia and even amenorrhea are two of the most common gynecological complaints in women of child bearing age. The likliehood of sarcoidosis being a culprit would be low compared to the common reasons, many of which can be elusive. Because amenorrhea often resolves on its own and menorrhagia can be fairly easily treated, many gynecologists do not pursue the reasons behind it agressively as it may not be required to improve the symptoms.
Hope that helps answer some of the questions, or at leasts gives you some info to take back to your doc
Thanks Paradox! All the information I've received from you and others on this board has helped immensely. I feel as though I've obtained a 4-year college degree in Sarcoidosis in just a few short weeks. Talk about being totally clueless, yikes. :)
i am pretty sure that the sarcoid being as mean and nasty as it is, doesnt really effect female parts, i have had a baby since being dx with sarcoid and that seemed to be the only time that i was feeling normal, and trust me i dont know what it feels to be normal anymore.. outside the skin bumps, i didnt experience in troubles do to sarcoid while pregnant, he was a healthy baby boy
Hi everyone,
Just wanted to toss my experience into the discussion. I don't believe for one moment, no matter what's written that Sarcoid doesn't impact a woman. I'm 51 now, have four kids and have had 3 miscarriages. All four completed pregnancies were problematic with bleeding the entire duration. I had to be on bedrest pretty much during each one. Right after my oldest (he's 25 now) I got pregnant twice and miscarried both times. I had another miscarriage in between my second and third sons. My OB/GYN at the time told me that since he couldn't figure out what was wrong with me, I must have a sexually transmitted disease!!! Now without getting too personal, that wasn't even possible! (although my husband and I kind of look at each other very suspiously for awhile, lol!) I finally found a wonderful Doctor who told me that he thought that I had a "funky, unexplained" problem with my immune system....smart man. I too had terrible periods and I have just recently been diagnosed with fibroids. It wasn't until my daughter (my youngest) turned 3 and my thyroid started going crazy that they realized they couldn't blame it on the pregnancies, postpartum anything or at that point "because I was an overwhelmed Mom" (heard that one too many times!!). My new internist, a woman, immediately sent me to a top hospital in my area and I was diagnosed almost two years later....I'm doing fine. In the middle of a flareup right now and doing the old prednisone treatment, but I feel lucky. Most days I'm okay. The good news is that I have four beautiful, healthy kids that I love more than life. Alls well that ends well! God Bless all of you, hang in there.
Thanks Wendyb and 4mom56.
I'm not sure about anything when it comes to sarcoidosis but it just seems suspicious to me that most of my adult life I've had problematic periods and not a single gyn could find an legitimate reason as to why. I was also unable to have children, something that is very very hard to talk about for me.
I hope in the future that a cure is found for sarc because the suffering is just too much.
What about the medications we use? Has anyone had kids after being on MTX?
Hi there,
It was really interesting reading your difficulty with being diagnosed. I have had varoius strange symptoms on and off up until the birth of my third child. Shortly after I started experiencing terrible afternoon fatigue, painfl ankles especially in the morning and the worst was some kind of neuralgia in my jaw and ear with headaches.Went to the doctor to be told it was depression, must be tired with 3 children etc. Battled on, then when youngest was 18 months, ear pain returned with tiredness, pns and needles weakness all on right side, slurred speech, lack of cognitve skills, dragging foot, fatigue, blue toes, periods dissapeared (normally 12 days long) Went to different doctor who arranged an emergency appt with neurologist, as she suspected early ms. Had mri, evoked potentials, mri only showed lesion.Was told pretty sure not ms may develop into sarcoid or bechets, but have to wait and see! This is really hard to do. Have been having symptoms come and go but the last 3 months have become very fatigued again , periods on for 10 days off 1 week back on etc, having very negative thoughts, short tempered. Had some more bloods done showing low folic acid and low thyroid, just done bloods again, could sarcoid effect thyroid?
Sorry to rant on and on, just feel like this going on forever with no real answers.
Thanks Lisa
Regarding MTX and pregnancy, it is a category X, meaning it is known to cause birth defects and you need to practice very reliable birth control while on mtx. I was told, depending on which doctor I asked, that you needed to be off mtx for at least 3-6 months before getting pregnant.
I was healthy, until I tried to have a baby. Long story short, 5 miscarriages, no reasons found, had extensive workup by two reproductive endocrinologists and dna samples were taken from my babies and they were genetically correct. It was while I was going through all this that I started getting sick. Took them 4 years to figure out it was sarc. No one can link the sarc to the miscarriages, not even my very good sarc doctor. I just don't know.
I was treated this past fall for blood clots, two pe's (clots in lungs) and three dvt,s (clots in legs.) They have no idea how I got so many clots as I have had the clotting work-up done twice and its always negative. They have told me that if I ever decide to try and get pregnant again, they would have me on blood thinners through out the pregnancy.
Does anyone know if we sarc people are more prone to blood clots?
Hello All
I am currently on MTX.Would like to have another baby before I end up with powdered eggs! LOL! However, having liver issues right now, and the docs feel that there is an underlying issue with my liver aside from the sarc, so until I find out what is going on there......
Bottom line is, I have 3 Children ages 17, 13, and 7. It is thought that I have had sarc for many years prior to actually having been diagnosed. My pregnancy and delivery went fine with my oldest when I was 18, however with my middle son, age 13, I had actually retained a piece of the placenta for more than a week after he was born and remained fully dilated and bleeding and cramping though back then the hospitals were sending you home as fast as you were popping out your child! So off I went and over a week later, ended up back so weak from blood loss I could barely walk. I ended up having a D and C to have the remaining piece of placenta removed. Finally my cervix closed and life went back to normal until my milk supply dried up a week later. (HUH? What the heck happened here? Could it have been the breast sarc even back then? Stress? Who knows why...)
Moving on to my daughter.....She will be 8 in 2 weeks. She was born a month early. No idea why. She weighed 3lbs 15 oz and was healthy enough to be released at that weight. However, My entire placenta this time refused to detach with her! Where my 2 boys were very quick and painless 2hrs and 12 min and 1 hr and 20 min she was 9 hrs of back labor UGH! She was fine, healthy and perfect with fully functioning lungs, but again I was bleeding so badly that I remember through my drug induced stupor, the doc puonding on my stomach~! I was asking him what the heck he thought he was doing! There was blood going everywhere! He told me that I needed to deliver the placenta or I would need emergency surgery!!! Yikes! So I just let him beat away until the thing came loose, and finally it did thank God! No surgery!
Seems odd to me that 2 separate pregnancies, many years apart and both times there were issues with placenta either in part or in full not detatching. Not normal.
I definitely want to have one more child. I am 35 now and am very much aware now that I have sarc in alot of places in my body. I am very prone to yeast infections and have to take diflucan once a week to prevent them. give me antibiotiocs or a dose pack of pred along with my MTX and I either get yeast anyways or an overgrowth of bacteria down there(which feels even worse than yeast!) and end up on Flagyl or MetroGel. So I have to agree that sarc whether directly or indirectly, must somehow effect the female reproductive system.
According to reading material from the MTX website, you only need to wait a full menstrual cycle before trying to get pregnant after stopping MTX, however, to me, where it is used for chemical abortion, I feel I would want to wait 3-6 months before even trying. Heck while I am on MTX and I take birth control pills and will not allow my fiance to finish inside me because I fear getting pregnant and having a child with either birth defects or a miscarriage while on this med.
I have read that sarc goes into remission during pregnancy as Paradox and Wendy said, and a huge part of me wants to try that and see, but as crummy as I feel right now, I worry that things could be 10x worse with a pregnancy if it did not go into remission! Perhaps after I find out what else if anything is wrong with my darned liver, I will be braver and give it a try. Scary to think about stopping the MTX though. I breathe so much better with it and my PFTs are so much improved! However my clock is ticking loudly in my ears and I know my fiance would like one more child once we are married. His daughter is already fully grown and he loves my children like his own, but one more of his own would make him very happy. It's a dillemma! Anyone with sarc take pred during pregnancy? as opposed to MTX? are there any safe sarc meds during pregnancy? perhaps Paradox has an answer for this one????
Be well all!!!
Dawn
Hello, Jackie7 I am sorry you were unable to have children. My name is Jackie as well and I had to do invitro, worked once thankfully we have a beautiful 7 year old boy. When I was 30 I was diagnosed with Endometreosis stage 4 or whatever is the worse. I had several surgeries over the years and finally did invitro when I was 36. After I was diagnosed with Sarcoidosis my sister was chatting with a woman from Bend Oregon who has it and my sister asked when she was diagnosed. the woman said when she went into the hospital to have a hysterectomy for endometreosis. The woman is of Scottish/Irish descent as am I. My mother is 100% scottish and on my fathers side we are German and Austrian. Several months later my other sister who lives in Idaho was talking with a woman whose daughter had just been diagnosed with Sarcoidosis. The daughter had previously had endometreosis and had a hysterectomy and by the way also of scottish descent. I mentioned this to my pulmonologist he found it interesting and was going to see if any info out there about it. I had a hysterectomy in 04, 3 years before I was diagnosed with Sarc. I just think it is interesting.
I was told that pred could be taken during pregnancy if the benefits out weight the risks. I have also known of woman to use both humira and remicade while pregnant, they are both category B. The only catch is that they do not know if there are any long term problems born to the mothers on the TNF drugs because they are relatively newer medications.
Maybe Paradox will have more definite answers?
This sheds light on a lot of things. I had 3 miscarriages in a row before I had my 2 living children. I wonder if estrogen has a big deal to do with it, because I felt better when I took birth control. Never really noticed symptoms until I went off of it.
Prednisone is considered "safe" during pregnancy... pretty much. There are some risks with it - but mainly they have to do with the baby growing too well. Prednisone is one of the medications given when it seems a baby is determined to be born early because it helps the baby's lungs to mature. It also, of course, can cause some increased growth, which can lead to problems at delivery.
I think any pregnancy on sarc meds would be deemed a "high risk" pregnancy and should be followed with a competent OB who is willing to plan on doing C-section. I know I would be pretty adamant that a woman would be willing to go that route for delivery right up front - although I would be willing to hold off as long as close following of the development didn't reveal a baby so large as to be risky to attempt non-operative delivery.
MTX, Thalidomide and several other drugs including cellcept are absolutely contraindicated during pregnancy. Personally, I'd be pretty nervous about the TNF drugs too, just not enough data.
I must be the exception which proves the rule - apart from a 1lb, 4" diameter ovarian cyst surgically removed while I was 4 months pregnant with my second child, I've had virtually no gynaecological problems, and both my pregnancies were problem-free. Apart from the afore-mentioned cyst, I had a little morning sickness in the first trimester each time and births of 4 & 6 hours duration respectively. Before & after pregnancies everything else has always been light, regular, with just a little cramping. Since starting epilepsy medication I've used a hormonal IUD, and now only get very occasional spotting. There is no interaction between the IUD hormones and other medications (according to my Ob/Gyn), so might be worthwhile considering for those on MTX and desperate to avoid a pregnancy.
If you read my bio you can see for yourself that as far as I am concerned sarc. cost me misscarriages, oopherectomy and other problems later.
Lost left kidney and adrenal gland, gallbladder. Better to read the bio.
Hope this helps
God Bless you in your struggles.
Joyce
Hey there Marlene
I have been both on and off traditional Birth control pills. I find that I cannot take the low estrogen pills or i have a lot of extra mid cycle bleeding and cramping. I have to take the traditional "older" form of the pill. Perhaps estrogen does have a lot to do with it.
Anyone else out there experience a dramatic loss of sex drive??? (sorry to put it so bluntly) Not sure what causes this, but I thought at age 35 I am supposed to be reaching this great "peak" that everyone talks about, but here I am with the sex drive of a slug (ah...Do slugs even have nookie??? LOL) just waiting for something profound to happen. Perhaps paradox can shed light on this. Could it be the Methotrexate? The birth control pills? Any thoughts?
Be well
Dawn
Be well
Dawn
Hi Dawn
I've found my libido waxes & wanes - great when I'm feeling well, disappears completely during a flare. Not helped one little bit when prednisone becomes involved. I'm starting to feel a bit better with MTX & my sex drive is picking up a bit too. So I guess while ever there's any hope that a flare will subside, there's hope for your libido to come back as well.
Add to the discussion