Hello everyone. Tuesday I went to my surgeon for my two week post op appointment. When he walked in we both began to laugh. Him from seeing me so darn happy, and me, well, being so darn happy. Although I hurt still from the incisions from the LASH, and am majorly sore throughout, the pain I had before surgery is gone. Literally while waiting for the surgery, I was curled up on the gurney holding my right side.
He sat down and opened up my chart and out came the photos. He said that I did NOT have endometriosis, but instead had severe "congested pelvis syndrom" with a severely tilted pelvis. I was so tilted, he said NO blood should have been able to get to it.. Typically the blood vessels are that run to the uterus are supposed to by quite small and uniform, and mine, about 2 dozen, were about the thickness of his thumb and purple. He also said I had the "angriest" uterus he's ever seen in the 25 years of surgery. One side was normal in color, pale pink with small vessels, and the 3/4 rest was inflammed and bloody. The uterus was so enlarged it was pushing on my bowel, which explains the bowel problems, and was pushing up my intestines, stomach and then my lungs. That would explain the acid refulx I HAD.
Anyway, since it was chopped up in many pieces, there's no way for pathology to definitively say there was adenomyosis as well, since they need a whole uterus for that. But either way, he said there was no question in his mind and the other specialist (who by the way, both thought when they were going to cut me thought it was going to be an easy hyst) that this needed to come out and there was no other way to bring me relief.
Sore, but back to portrait painting, and even sat on the floor for 8 hours the other night bent over doing taxes....ughh!
Hello, I just wanted to say I found your post quite interesting, as we seem to have shared some of the same issues. I am almost a month post-op LAVH/bladder repair/sling procedure. Prior to my surgery I was experiencing bloating, bowel problems, bladder problems, shooting pains down my leg, and horrible reflux. About two weeks before surgery my pcp increased my reflux meds to twice a day as I was having horrible problems with the reflux. The plan was too address the reflux (possible scope) after my hysterectomy. During my surgery my GYN said my left side was filled with huge varicosities, which would explain the shooting pains down my left leg. He also described this as pelvic congestion syndrome. At two weeks post-op I was still experiencing the leg pains and he said it may take awhile, but since they've got rid of the blood supply (uterus) he is hoping it will improve. He also said my pathology came back positive for adenomyosis. I was wondering, after reading your statement about your uterus being shredded, as to why they couldn't diagnose your adeno? I'd never heard that before. I haven't gone off my reflux meds as of yet, but once I'm feeling a little stronger I plan to start decreasing these and see what happens. I'm really hoping that the whole reflux issue was related to the pelvic congestion syndrome. Glad to hear the surgery has resolved this issue for you.
I also had my TAH/RSO for pelvic congestion syndrome - on 2/15/05. The pain I experienced preop is magically gone as well! The pain preop was constant and unbearable especially with sex. Still pretty sore from surgery, especially in am, but that's getting better! Also very emotional - kept one ovary - hope that gets better soon. My dr. also told me there was no doubt TAH was the best option for me! Happy Healing
I'm also surprised that even though your uterus was shredded that they couldn't check for adenomyosis. It's normally detected with a microscopic analysis. You might want to contact the hospital for a copy of your pathology report; it might be on there.
I didn't have congestive pelvis syndrome, but my doctor did tell me several years ago that he'd never seen a uterus as tilted as mine. My grandmother's uterus was so tilted that the doctors told her she would never have children, but obviously she did because my mother was conceived and born. My mother's uterus was so tilted that the doctors told HER she would never be able to have children, but she did.....two of us. My sister's uterus was completely inverted and the doctors told her....well, you guessed it.....but she has two children. So, this is evidently a condition that is hereditary.
Glad you're feeling so much better, krystalslight.
My doctor told me he definately felt it was adenomyosis, but the pathology report did not state it because it said it (pathology dept) didn't have an intact uterus to measure endometrium thickness/tissue thickness. He said the uterus was only about 1/3 full of adeno tissue, but that was not what was causing me all the pain, it was the congestion of all of those veins. He showed me that the veins and my uterus tilt combined made the veins and vessels that fed my uterus were making the heart work harder since they placed ABOVE my heart.
Since I had the LASH, they chop up the uterus into small pieces to remove through the small incision. I know which side they worked through...that's the one that smarts! LOL
I was diagnosised with Pelvic Congestion Syndrome before my Hysterectomy. It's not often done...but I was scheduled for a Uterine Fibroid Embolization. Where they put a cathater in the groin to the uterus and shoot some stuff in to block the blood flow. At the last minute, the DR decided my fibroids were not large enough to be causing the pain and problems I was having. Instead...he did the cathater thing and shot dye in and saw the Congestion. He also saw that I was bleeding from one of the veins. I had my TAH BSO on Oct 1st 2004. I also had Adenomyosis. Iv'e had an easy recovery, but even at a little over 5 months post-op. I still get tired..swelly belly..and my incission gets very sore and tender. But...all in all...it's a heck of alot better than what I was experiencing before.Long, heavy, painful periods..with clotting. Painful sex and spotting during and after sex. Back pain. And a host of other problems. Having a hysterectomy was the best thing I could have done to improve my life. I certainly don't regret it. Mona
I just got back from an appointment with the reproductive endocrinologist and I am feeling a little confused. He now thinks that I should see someone about pelvic congestion. I am so sick of this pain already that I left feeling like it might be another waste of my time. I decided to check in with this website and was happy to see a post about this -- even an entry from today! I have been experiencing pelvic pain for 3 years now. I have pains on both sides, painful sex, constipation, indigestion, pain down my legs and back aches. Does this sound familiar? Did you try different treatments before having a hyst? Thanks for any help with this.
I am so tired of feeling like I am crazy! I am also tired of crying in front of doctors who cannot help me. This is really beginning to effect my life!
Samandian, I just got your post in my email, and all the symptoms you are describing is what I have been going through for years.
They didn't expect the pelvic congestion when they opened me up, they were doing this based on adenomyosis issues, but they found I was so darn congested! There are only a few sites that I know of that even discuss this, but here is one that I found the most helpful laymen's terms with it.
Good luck, I had bounced from doctor to doctor until I found my surgeon and even he didn't realize until I was open what was causing all the pain. After, he said he had no doubts, nor did the other specialist (they are the top guys for infertility and women's issues in PA) that I needed this surgery.
Sam...this is what I learned from the Dr...about Pelvic Congestion Syndrome....It's rare to be diagnosised before hysterectomy. I was diagnosised pryor by having a Interventional Radiologist insert a cathater into my groin (simular to what they do for heart patients) it runs to the uterus and they inject dye. They take pictures. And they can tell if you are congested. Now if I remember right, if it's not too bad, they can put in stents and it will help the condition. Mine was way too bad. In that case...the only solution is a hysterecomy. This condition affects the Ovaries. In my case...I had Fibroids and Adenomyosis and that was why I needed my Uterus out. I also had a questionalble cervical biopsy and so they removed my Cervix also. I hope this info helps out. All of this diagnosis happened very fast and I just hope I remembered everything. Mona
I am so thankful to have found other women on this site who had a hyst. for pelvic congestion syndrome. I had a lap on 3/14 which diagnosed pelvic congestion syndrome and adenomyosis. My symptoms were just like all of you described...excruciating low back pain, pelvic pain, irritable bowel symptoms, lots of gas/belching, reflux, leg pain. The doc said he wanted to remove one ovary in addition to the uterus, and he asked if I had more problems on one side than the other. I had slightly more back pain on the right, but the thing that really scared me was that on my left side I was having leg pain, numbness. It actually felt like I wasn't getting circulation to that leg! Based on what I told him, he decided to take the left ovary.
Here is my fear at three weeks post-op. I am still having the same back pain/pelvic pain. It comes and goes and has been worse this week when I would have had my period. I have read all of your posts on this thread and seen that some of you had instant relief after surgery and some of you haven't. I would be interested to know how those of you that didn't have instant relief are doing now that some more time has passed. I do have to say that I have seen some improvement in my leg, so for that I am grateful.
My doc said something very similar to me as your doc said to one of you ladies...that given time those veins will shrink and diminish since the source that was feeding them is now gone (the uterus). So I am hoping that time will help me to feel better.
I would also be curious to know if any of you ladies kept both or one ovary.
I was in tears earlier afraid that I am not going to get rid of this pain, but reading this thread has really helped to calm me down and helped me to see I am not alone. Any feedback you can offer me would be great!