Hello everyone!!! Spring has arrived. Things are in full bloom here. Traveled down to Charlottesville, Virginia home of my medical school Alma Mater, University of Virginia, for a long weekend. Pictured is the Lawn and a finally renovated Rotunda built by Thomas Jefferson. The dome was covered for so long while they were working on it before I left.
I digress.... so on to the update. Had MRI and EMG. EMG was stone cold normal. Great news. MRI showed arthritic changes and degenerative disc L3-S1 with protrusion onto anterior sac without nerve compromise. Also great news. Steroid injections and PT away for this. Still waiting on HLA-B27 test result - update, it’s negative.
So here is the perplexing, crazy news. MRI pelvis showed multiloculated complex cyst and large follicles on ovaries. So I guess this is why I’ve been having hip pain for a while. No sacroilitis. I am still getting my cycle every 28 days. Back pain certainly is worse around that time but has been more persistent for last 6 months. Anyone else ever had this? I think maybe it’s autoimmune oophoritis secondary to lupus or rupturing cysts. I was taking oral contraceptive/birth control from age 13 until 32. I stopped due to contraindication in those with migraines with aura. I feel like my lupus got much worse after stopping but can’t go back on due to lupus anticoagulant and clotting risk. Radiology wants ultrasound which sounds reasonable. I don’t think it’s cancer (can never say never though). Haven’t seen a legit OB/Gyn other than for annual exams. I read that this is rare in lupus and just wondering if any of you ladies have advice on this?
At this point, I cannot think of an organ in my body that lupus hasn’t affected. I always boasted that my ovaries and uterus were hanging in like champs.... until now. My renal function stays steady with an eGFR of 60 but didn’t improve a smidge with stopping NSAIDs. If any of you know of any luck spells, send them my way. I could use some right now.
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Jmiller623
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Hi, I'm in Charlottesville, too--live here. Lots of flowering trees right now. I'm sorry about your ovaries. If you want to find matches for lupus oophoritis on here, you probably need to make it the topic of the post. When you last spoke about your back pain, you were uncertain aboout HLA-B-27. I have both HLA-B27 spondyloarthropathy and degenerative disc disease in all the lumbosacral area and have had spinal fusion. It is very hard to distinguish the two in imaging if you do not have true bamboo spine. Could the ovaries be causing your back pain? I hope you get relief. It does seem that now various avenues are being explored. Wishing you the best.
Thank you so much Joaclp. Such a small world with regards to Charlottesville. We should meet up some day. I come down to my in-laws who have a house out by Lake Monticello.
I think cysts are probably breaking and that’s probably causing my bouts of extreme pain. I do get abdominal pain but it’s mostly back and can definitely be referred from retroperitoneal inflammation.
HLA-B27 is still pending and I still wouldn’t rule that out 100% but it’s unlikely without SI joint involvement. However, I’m not my own caretaker/doctor. But you are correct that the picture is at least clearer and we can focus on what we now know.
I’ll change the title and maybe repost tomorrow. Thanks for the advice. I hope you’re doing okay. Let’s exchange info over PM. I’d really love to connect in person with one of y’all if possible. You’ve been a guiding light for the better part of 2 years now.
I can’t add much to this other than my daughter has had this (and currently is dealing with Gyn at an appointment tomorrow) complete with self-resolving torsion. She also has migraines w/aura. No lupus but she does have eczema and CRPS (both now considered AI). She had in the past tried every combination of OBC and DEPO (that’s how she ended up with CRPS (Lis Franc fracture caused by osteopenia) Anyway, she ended up going to a Mirena IUD for the progesterone and to control her cycle. She had also had 10 week long bleeding because of the cysts etc. The pain transfers to her CRPS in her Right foot and eventually mirrored to her left as well. It’s no fun.
I am a DES daughter. It’s probably my fault somehow even though I never took the DES, it was my mother. Other than a T-shaped uterus and complicated pregnancies I didn’t have the problems she has. I also didn’t have any AI problems at her age 🤷♀️
I will let you know if we find anything useful out tomorrow. So far, it has been very frustrating. Their offer was to remove the Mirena (that they put in 2 years ago- her second.. the first worked for 5 years) but the resident had no real reason why and the fertility ENDO fellow was less than helpful in there curbside consult on the fly 🤦🏽♀️ They really didn’t have any alternative and then asked her if she was fragile-X . She is on the autism spectrum, but is very high functioning and has a genius I.Q. Sometimes, I wonder if they read the records at all!!! Grrr!!
Thank you so much for sharing DR. I am not a DES daughter but my mom was on danazol when she got pregnant with me. She had bad endometriosis. I noticed that BarnClown and I had a lot of similarities in presentation minus hEDS and she is also a DES daughter if I am correct. I’ve always had excruciatingly painful menses but not like now which renders me almost completely nonfunctional due to pain.
Hoping to maybe try progestin only pills if imaging comes back benign (which I expect). Please let me know what happens with your daughter. The more knowledge, the better. I think I hit an emotional wall today. Just about had enough. I need to just take a month where I schedule no appts.
You are correct, Barnclown and also Honeybug are DES daughters with me and we all are very much Zebras 🦓. I also have a child who had severe endometriosis at 24 and when having a hysterectomy was found to have 2 complete sets of reproductive systems. (The buck stops somewhere)
Anyway, I digress... the latest appointment w/Gyn and their proposed solutions are to remove Mirena and cause ‘diagnostic breakage’ and see if the thinned uterine lining from the progesterone will normalize or what 🤷♀️. They have a plan, they just don’t know what it is just yet. Their theory is that since she has had 2 Mirena devices, her bleeding/abnormal cycles/pain is caused by the extreme thinning. Sounds suspish to me but, I wasn’t in the appointment and I think they are actually looking for other things as well. Her neuro has ordered a L/S MRI that she is having this week for pain so you never know what that is going to turn up. I’ll keep you posted on the ongoing saga. She returns to Gyn in 4 weeks.
It was clarified in the appointment that the “bleeding” she is having is being termed ‘abnormal uterine bleeding’ because with the Mirena, she should not be having periods or ovulating that often. Sooo, thought is that the device/&/or progesterone has thinned endometrial lining too much and it is now irritated.
That sounds plausible, but in my opinion, after thinking about the patterns and weighing the evidence, I think it is unlikely. However, They feel, removing it will allow an observable/somewhat controlled break where they can perhaps interpret the data better and come up with a better solution that actually addresses the problem instead of throwing more muck at it shotgun style to see if ANYTHING sticks.🤷♀️🤞🏼😂
As long as it doesn’t make her CRPS worse or cause her to go off her Aimovig (which has been a godsend!) and keeps her from having migraines 20+days/month. I just thought I would elucidate this a little better. I hope you are holding up well. It’s almost Friday!🌷😘✨🦋🌸🍀
I haven’t experienced this at all JM but I have had 2 general pelvic infections after the loss of my babies at 20 weeks and 22 weeks so have some idea of what pain you will be suffering. I don’t know of any luck charms but I’m hoping and praying 🙏🏻 that your ultrasound will reveal good news and that you receive the help you need and feel better soon. I love the picture - what a gorgeous building and built by Thomas Jefferson. Wow. A beautiful piece of history.Thinking of you JM. Let us know how you get on. 🤗xx
So sorry to hear about your losses and ordeals Spotty. Thank you for sharing.
Ultrasound showed small uterine fibroid and enlarged left ovary described as multicystic. Could mean a lot of things. Have appt with Gyn on May 6. Hoping to try progestin only BC and see if it helps. Hoping no need for a biopsy. Will see and keep you up to date.
I hope you get to try the progestin and that it helps you JM and I hope too that no biopsy will be needed. 🙏🏻 Let us know how your appt goes on 6 May. Wishing you all the very best of luck and sending hugs 🤗😘x
Hi! I had never heard of autoimmune oophoritis until your post. 20+ years ago I was diagnosed with lupus. At that time the gynecological symptoms I had led the gynecologist to assume it was endometriosis. Without any scans or other tests, I had a laporscopic surgery to come out that it was not endometriosis, but it was due to a large fibroid on the ovary. That led to a complete hysterectomy. After reading about autoimmune oophoritis, I believe that should have been the diagnosis possibly, but the doctor was obviously looking for the most obvious answer right from the beginning and was certain he knew without any testing. I was more trusting in those days to think a doctor would not rush to a diagnosis. I had great difficulty healing internally from the hysterectomy which was also a surprise to him.
I am glad different avenues are being explored so the right diagnosis is found.
Thank you so much for the reply! I think you might be right. Autoimmune ooohoritis does cause fibrosis and atrophy of the ovary over time. I don’t think it’s super common nor do I think physicians even have it on their radar. I do think it’s underreported.
Had ultrasound today. I have a 1.5 cm submucosal uterine fibroid and my left ovary is a monster and was labeled multicystic (not be confused with polycystic and PCOS which have smaller cysts). Have Gyn appt on May 6 and plan to ask about autoimmune oophoritis. Either way, hoping to maybe try progestin birth control and see if it helps. Repeat imaging in a few months to see if any improvement.
I swear doctors perform hysterectomies like heart catheterizations.... at least back in the day. It was like oh.... you have problems with your ovaries or uterus then we’ll take everything out. A colleague and I would discuss this all the time. I’d give talks on not performing oophorectomies for hemorrhagic cysts. Work up what is causing the cysts and TREAT IT! So annoying how lady bit problems are bottom tier sometimes. It’s gotten better and I am by no mean a bra burning feminist but female health care still has a way to go.
So sorry to hear about your ordeal. Hope you are doing okay now. ❤️xx
I had great trust in doctors way back too... I never 2nd guessed my OB-GYN when I was pregnant with my second child and was found to have cerv. dysplasia and needed biopsies. Mind you I had hyperemesis gravidarum and was vomiting 6-8X a day so it had to wait until that calmed down but then it came back suspish so I was to have a LEEP 6 weeks postpartum.
What I should have done was had them repeat my pap (knowing what I now know. I am a DES daughter and it is common for this to happen during pregnancy. I was treated like I was a less than virtuous woman, because of course I must have lied about only having one partner ever and getting the side-eye. It was all very paternalistic. Yes, Jmiller, medicine still has a ways to go. Thankfully, it is better than it was back then. I certainly know how to assert myself!😉tactfully of course. As my mum always said,”You catch my 🪰 with honey 🍯” Still, that LEEP scarred me. He botched it and I never went back to him. He was in the same practice as the doctor who delivered my first child by crash c-section and figured out I was a DES daughter. How could they be so different? Glad we have both learned from our medical misadventures. The next generation doesn’t have to.
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Pain that is not inflammatory, how did you deal with it? What did your dr recommend? 
Pain under rib cage and into back
bent fingers with pain
Shoulder and neck pain
Pelvis, hip, lower back and coccyx pain 
