I need help. I'm at my wits end. Surgery or not? (fallopian tube filled with water, uterus filled with blood)

I am hoping someone here can help me. My problem is kind of a long story but I will try and make it short and simple. I have had awful periods from day one and they kept getting worse with age. In 1998 I went to a gynecologist for the first time at age 34. Never had sex and still haven’t to this day. I was told my two different gynecologist (1st one was no help at all) that there was nothing wrong with my female parts. Both said I did not have endometriosis from having an ultrasound done vaginally. (I also have intercycstial cystitis which causes pelvic pain too so the 2nd gynecologist said it was that causing all the constant pain). Fast forward to 4 years ago and I had non-stop bleeding. It got better overnight but once I was standing up heavy bleeding and cramping on top of the bladder pain. My gynecologist wouldn’t help me because of my insurance not paying him enough (that’s another long story) so I found another gynecologist, which is basically that last one to try. I live in a small city with only 1 hospital now too because that big hospital bought out the small one. Saw the NP first and after the ultrasound she said I had complex cysts which turn into ovarian cancer and I need a hysterectomy right away. I was going to die from cancer. I broke down really and told her I couldn’t do surgery. My dad was in bad shape and he needed care. Three weeks later I saw the doctor. She told me she didn’t think they were cancer and it was endometriosis and wanted a hysterectomy done. Told her no. I ended up having my right ovary and fallopian tub taken out. She burned the lining of my uterus (I can never remember the name for it) in hopes that would stop my bleeding. She said it might not but with my age (48) I might get lucky. Lets just say it was awful! After waking up from the surgery they threw me back into my room and walked away. No one helped me, no one bothered about the pain and I got sent home not being able to pee. (It made my IC worse) When I told the nurse (twice) that I couldn’t pee she just looked at me. Later that night I went to the ER and was there 5 hours. 3 in the waiting room and 2 in the exam room. No help at all so I got up and left. Needless to say I don’t have any faith in that hospital anymore. Fast forward to now. I’ve been having what I thought were period cramping on and off but since no bleeding I figured just extra pain from my bladder. Last Saturday (I’m 51 now) I got hit with really bad cramping that would not stop. Went to gynecologist on Monday. Saw the NP again (couldn’t get in to see doctor) and had ultrasound. She told me I needed a hysterectomy right away. I had such a mess now. My left ovary had a cyst, first half of fallopian tub filled with water because it’s blocked off now and in my uterus is a giant blood sac and if it broke I would bleed. I told her that’s fine. She said no I would bleed to death. Either internally or vaginally. Went to see doctor on Friday about surgery. I was set on doing it because of the pain but I don’t really trust her now. That blood sac I could never ever bleed to death from because it’s old blood. What is happening now…my uterus came back to life and I have been having my period but because she burned the lining it also burned the opening of my cervix which is now plugged from scaring so that blood sac is old period blood. My doctor said she has never had this happen before and never read anything about it but said…hysterectomy. They just seem to push that all the time. I told her no. There is lots more to this story but I have already written a novel. I really wish I had just gone with my gut feeling and not done the surgery. I might have been bleeding all the time but at least everything worked. Now nothing works and I’m guessing that old blood sac will keep filling up. I did ask her if she could just unplug the cervix and she said she could but it would be very painful. I’m at a lost here. I shouldn’t have to be a doctor to figure things out so can someone please help me on this? I am actually thinking of just leaving things the way they are for now. Figured the uterus can hold a 9-15 pound baby and the blood sac I have now is the size of a plum. I’ve never been pregnant and can’t really figure out how such a mess has happened with all the parts??? Will that sac get so big it will pop? Is the old blood dangerous? What do I do? Hope I didn’t make this to long.

No one has ever had this happen? I can't seem to find anyone anywhere with a response to this. I can't even find it by googling. :-(

Hi inpainallthetim -

I am so sorry you are dealing with this.

One of our hostesses believes you are having post ablation issues. You really should not ignore this. She believes your tube that is filling with blood could burst. She also thinks that there is a significant infection risk if you do not get this blood out.

Please get this addressed ASAP, and do not ignore it. This is not a normal situation.

The blood fluid building up isn't in my fallopian tube but in my uterus. My fallopian tub is just plain fluid. What options do I have other then a hysterectomy? I really don't want to go through that surgery. The ablation was bad enough. Plus I need to find a gyno who knows about intercystial cystitis and one whose solution for everything is a hysterectomy.

I googled "blocked cervix" and it found a post that was made on this website with another lady having the same problems as mine. After reading it and all the replies I know now I will be doing a hysterectomy. I am crying right now. My wonderful gyno never mentioned to me that this could happen and now that she told me last week she has never had this happen I'm guessing she has never done the ablation before. I never should have let her talk me into doing it 2 years ago. I took her 2 years to talk me into doing it. I should have gone with my gut feeling. Now I some how have to find a good doctor (who I can trust) to do the hysterectomy. I'm so upset by this. I really am. I just seem to get in worse shape every time I try. Thanks for the help on my situation. I never would have found any answers any other way.

I am not certain, but getting alternate opinions from different doctors on your condition is a very good idea - as long as you are not endangering your health. Have you asked about your tube bursting? Would opening the cervix (even though it will be painful) solve your problem? Or would it just plug again?

This forum is an options and alternatives forum. Hopefully someone with similar experience to yours will see this post and respond.

I have never heard of this but I would definitely find another gyn. Even if you have to go to another city to find one. In the end you may end up with a hyster. I am not understanding why you do not want if it could make you life better?? It really is not that not that bad.

I made another post with an update. I found a posting by another woman with the same problems as mine. She received many answers and most has to have a hysterectomy. I’m very afraid of surgery. For one I had very very bad care after my last surgery and I also have Interscytial Cystitis and the last surgery made that worse. I was afraid it would and my gyno kept telling it would help my pain. She just doesn’t understand the bladder problem. Im on Percocet already. Was on Vicoden before surgery and that didn’t help with surgery pain or afterwards so now I went to Percocet. I will be seeing a gyno out of town and if surgery is needed it will be in the hospital out of town too. I’m really upset by this because of my now gyno had told me this could happen I never would have done it at all. I always planned on making it to Menopause and everything down there would be great but I guess my planning was all for nothing. I don’t know if anything will rupture or not. She didn’t mention it but she knows nothing about this problem which I think is rather odd for a gyno to say. So, all I can do for now is wait until Monday afternoon and see what the new gyno has to say. He is 70 years old so I’m hoping with his age comes wisdom too. Thank you all for your help.