sle lupus and hughes disease, trying to get pregnant

[JadeArmani]

Hi there! Weve been trying to pregnant for 5 years and havent had any luck. I was diagnosed with sle lupus when I was 21 and with hughes when I was 24 so about a year ago. We have had 9 chemical pregnancies and my doctor put me on a baby aspirin daily. Im just wondering what else we can do to try to get pregnant. My doctor who I immediately stopped seeing after he made this comment told me when I was 22 I would probably be better off getting my tubes tied then to keep trying. I asked if it was something we could put on the back burner and he said more like your deep freezer. im so sick of the disrespect from these so called doctors who literally rather say give up then lets try something. its not like its cervical cancer or something. Whenever I bring up other women with the same issues as me that have healthy babies, they just look at me and say well Idk ask them what they did! or I get told the baby aspirin should have helped. ive even asked for blood thinners and have been told no youre too young thats a life long thing. mind yall this was back in phoenix az, so now Im in north dakota and havent been able to find a decent high risk pregnancy doctor in 6 months. the nearest hospital to me that okay is 3 hours. im only 25 and I just want to be a mother and I cant bring myself to honestly believe that this is going to keep me from my dream.

[lupus-support1 Administrator]

I can hear the pain in your post. My recommendation is that you see a good infertility gynaecologist, because this is who you need to determine why you are not falling pregnant.

Has any doctor given a laparoscopy ie to take a look at your ovaries, womb etc? If not, this should have been recommended to you. Are you certain you are ovulating?

I have both SLE and Hughes. I had infertility problems and was sent here there and everywhere. I then saw a gynaecologist who rightly said, he needed to see and so he did. I was not ovulating. I have a condition called polycystic ovarian syndrome (PCOS).

mayoclinic.org/diseases-con...

When I saw my gynaecologist after my diagnosis of SLE, he nodded that all of it now made medical sense, the connection between SLE and PCOS.

Polycystic Ovary Syndrome May Be an Autoimmune Disorder

ncbi.nlm.nih.gov/pmc/articl...

Baby aspirin will thin the blood, preventing a miscarriage, but baby aspirin won't get you pregnant. You and your partner need tests. I am NOT suggesting you have PCOS. I am just recommending you see a good gynaecologist, one who works at a good teaching hospital.

Yes, I did conceive with help; I had twins after 4 years of trying.

Therefore you need to find a good gynaecologist.

Don't despair because there is a lot more you can do.

With good wishes,

Ros

[KellyInTexas Administrator]

I would think that you should not give up.

I have many questions for you in addition to Ros’ excellent suggestions.

Firstly, you got me at ,” y’all”!

👀🌵🦎.... where is that darlin’ from?

So, the desert south west! ( we have a business home in Gold canyon at the foothills of the superstition mountain... literally in our back yard. Our work affiliated company internationally is headquartered in Phoenix.)

I will tell you the Mayo in Scottsdale is no good for this.

The origional in Minnesota May be.

Dr Thomas Ortel with Duke university / Chapel Hill is good- but not sure about a pregnancy clinic there. You should call.

Have you ever had a clot? This would be compelling and very critical reason to have you on life long anti coagulation anyway. You have antibodies obviously of you would not have diagnosis. I assume that because you are in the USA you have clotted to fulfill the diagnostic clinical criteria as well.

If you have had a good rheumatoligist, OBGYN you will know exactly what I’m talking about.

Otherwise if you are following my conversation it’s because you’ve done your own reseach , which is sad. Your doctors should explain it to you very clearly. ( lab criteria ( blood work/ antibodies) and clinical criteria ( clots/ patient history/ family history...) . A good doctor should then discuss each critetia with you and give it an “ importance” star rating.

I have a personal theory ( that I’m in no way strongly convinced of) that sludgy blood my have something to do with hit or miss infertility. This is likely a poor theory and may have more to do with ectopic pregnancy. ( I had this issue.) all the way to rupture.

We did have multiple miscarriages- but had no problems conceiving.

So a different issue- but I wonder if sludgy blood disrupts the way the egg is moved along where it should flow... a good study could differentiate between hormonal issues and blood flow issues.

I have a friend with the condition Ross describes, was treated for it, and has the most beartiful 3 year old daughter you’ve ever seen! It is an auto immune disorder. Interestingly- she had several miscarriages along the way and was investigated for APS!

[starships]

I too could feel the pain in your post which certainly resonates still with me deeply.

I had two early miscarriages at 6 weeks before my excellent dr tested me as she had a feeling I have APS. Third pregnancy I was on aspirin 75mg from positive pregnancy test as it can increase miscarriage if taken before. This time I made it to 14 weeks which was an improvement but heartbreaking. As I am in the UK my dr could not prescribe heparin or other treatment as I needed to lose a baby further along to qualify!!!

I wasn’t prepared to do this so I paid privately to have a TEG test which is a more in depth clotting test. This proved I needed 150mg or aspirin and 5000 Fragmin. Before getting my test results I had a fourth miscarriage.

For my fifth and successful pregnancy I was prescribed 150mg aspirin, 5000 fragmin, 5mg food acid and progesterone pessaries. I also needed a cervical stitch due to short cervix due to precancerous cell removal. I was induced at 38 weeks and had a scan every two weeks from 24 weeks to check on growth but I had a beautiful full term baby girl who is perfect.

I also have PCOS but it hasn’t hindered me getting pregnant.

I agree with Kelly get a full gynaecology work up to double check for any other problems. A TEG test to see how much anti clotting medication you need, get you vitamins inc D and B12 as au have found treatment of these deficiencies helped regulate my cycle and an understanding gynaecologist. I also tempted to I got to know when I had ovulated and make sure we were dtd at the right time and to make sure I started the medication early enough once I did get pregnant.

I don’t think you have to give up. It’s often a long road for us but most of us get there in the end with good treatment and support.

Wishing you lots of luck x

[MaryF Administrator]

Hello, so firstly over on the right hand side of our forum under pinned posts, is our list of specialists who understand the condition. Alongside the PCOS often comes a Thyroid problem, It is vital to get adequately tested for that, beyond the TSH the doctor does, as unfortunately it does not paint an accurate picture, privately I test mine, and do many many tests, which a) showed up how serious my thyroid problem was and also b) now, the improvements I have made on the correct medication. Also you need to make sure your Vit D, B12 and Iron is at the right level, if your iron is low your thyroid will not work properly, and if on thyroid meds and iron, there must be a four hour window away from any iron, for thyroid meds. I had 3 successful pregnancies, (all grown up babies now)! Aspirin and Fragmin injections. MaryF