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So...while I have no formal diagnosis, I believe that I have Ovarian Remnant Syndrome.
Two days ago I noticed the toilet paper was pink after I went to the bathroom. I called the gyn and she directed me to my primary care provider. I was literally praying for a UTI because somewhere in the back of my mind I'm fearing the worst. A woman without ovaries doesn't have a period.
Of course, there is no UTI.
I know a remnant was left deliberately because my ovary was unexpectedly adhered to my bowel. After my hyst in November, I had night sweats, hot flashes, the works. I thought I was lucky when the hot flashes tapered off.
I know it might be something other than ORS, but I feel like I'm on my period, low back pain, pelvic pain and the return of migraines.
I have an appointment on Tuesday for a consult with my doctor. I'm so upset about this. I can't handle another surgery - I'm still having nerve damage pain from the last one! I was such an advocate against Lupron before my surgery but now I'm wondering if I should use it for a bit or go back under the knife right away. I also don't know what to do as far as finding a specialist. I don't think my gyn can remove a remnant from a bowel without a resection. Is that a possibility?
Anyway...I'm babbling. I'm just looking for info. to calm my frazzled nerves. Has anyone taken Lupron or gone on the pill post hyst? It almost seems like a waste, all the pain of recovery I've been through only to deal with this now. What about surgery to remove remnants? Has anyone had this laproscopically? I can't handle another abdominal procedure.
I'm so depressed about this - I just want to curl up in a ball and cry.
I am sorry you are having some issues and concerns right now that could be related to having a bit of ovarian tissue left behind due to its location on the bowel. I know I had some endo left behind at the time of my hysterectomy because of its location involving the bowel. It does take a skilled doctor to work in that area!
I would suggest keeping a symptom diary regarding what you are experiencing. You can also read through this forum to find other women who are or have dealt with ovarian remnant syndrome. You might find some helpful suggestions that they have posted in the past.
Do talk to your primary care physican about what is going on and ask for direction. Bleeding can be a sign of many things unrelated to ovareis or ORS. My post hysterectomy bleeding turned out to be interstitial cystitis (IC).
Endometriosis on the vaginal cuff or in the vaginal area can also cause some bleeding. As you have an endometriosis diagnosis, you may want to consider consulting with an endometriosis specialist in case the problem is endo related.
I wish you all the best and hope your medical team can help you to find the source of the problem soon!
I still have my ovaries, but they took my uterus, and although I am about 2 weeks from being 1 year post op, I too still have regular monthly periods. I recently had a vaginal saline ultrasound, and they told me that ALL of my uterus is GONE, and that the next time I start bleeding, I should come into the office that day. Two weeks ago I started bleeding again (like clock work) and they did an exam and pap. They found the source of my bleeding, my cervix (my hyster was supercervical). I bleed once a month from the outside of my cervix which my doctor told me is just wrong, but there is little he can do for it. I could go back and have another surgery, which he is against right now (as am I). He said also he could freeze my cervix, maybe block off some of the bleeders. I've already had an ablation before the hyster, and yet I still bleed. I am so sorry for your frustrations. Don't be scared of what they will find. I'm always scared of what they don't find. lol. I never can get an answer about what's going on with me, because I'm just such an odd case. I have thought about getting a second opinion, but my doctor is the top doctor in this field in this area. Hang in there.
Try a get a referral for a very skilled surgeon, my doc is famous around here for dealing with ovarian remnant surgeries, so there's bound to be someone in your area, one option is to see an oncologist gyno surgeon as they are very skilled at tricky surgeries, good luck to you.