Fear surgery will not relieve PATSS

Will the pain go away? That's a big fear of mine is having the surgery and the pain coming back! I am scheduling my surgery soon for PATSS.....

Irishdancegrl
No my pain still has not gone away. I was scheduled for my 6 week post op appt yesterday but had to reschedule because my entire family is extremely ill. My doc has been telling me up to this point that its my nerves that need to desensitize and that can take awhile. The pain is not as bad as it was right before I had the surgery, but it's also not getting any better. I am still taking oxycodone along with alternating Tylenol and Ibuprofen regularly. This last week was not a good week to expect any changes either given we have give kids and it being Christmas. My appt was rescheduled to January 4 and I'm hoping to be able to sit and have an all bs aside conservation with him. Is your doctor doing your surgery the same doctor you have been seeing the whole time for this? I had gone to this doctor who did my surgery for a second opinion and ended up switching to him because they are the best clinic in the state for gynecological issues and he actually had answers for me. From the time I switched however I never had any visits with him where he did any testing or anything, he just went based on my records that were transferred over. The surgery was also moved up because at that point the pain was very severe and was not going away and he was concerned about continuing to increase the narcotics for too long. I hope that things work out for you..... How is your pain at this point? Does it ever let up at all?

The doctor who diagnosed me was also a second opinion dr. After discussing everything, she had me come in the next morning to do an ultrasound where they said there was blood trapped as well as possible adenomyosis. I am so worried about the pain coming back and me taking out my uterus for nothing. (Although I think with the trapped blood, it has to come out). She also did a swab of my uterus and said I have a high white cell count, which is indicative of infection. My nerve pain is terrible....and I am extremely worried about permanent damage. I get lots of pinching in my back and some on my left side at my C section scar. This is a huge surgery and a long recovery to end up still in pain. I'm so sorry it's still there. Has the horrible low abdomen cramping stopped? I just have so many questions. When I had the ultrasound, the doc came in, confirmed what was on the screen and said, "you know you need a hysterectomy now, right?" At the time, I didn't care, I was just so done with the pain. But after some time to think, I am concerned....very concerned. I meet with her next week to talk about it. It was hard getting the diagnosis rig before Christmas bc she only had two days she was seeing patients before right after New Years, so I haven't had a chance to talk to her about it all. Please keep me updated about what your doc says.....this is all very overwhelming and I think so many things could play into what we are going through!

Oh, and to answer your other question...I take 2 Vic a day (which I hate!), cry daily (sometimes multiple times), pain is always there...it just changes in intensity. And I feel like sitting on the couch/laying in bed is worse on the muscle weakness, but I'm hurting so much I don't have a lot of options some days. Some days I don't even want to leave my bed!!! Today I did get up and took a shower and went grocery shopping with hubby and daughters. So, at least I got outside the house!

Absolutely!!! You are definitely right to be concerned!! That was my biggest fear and I had a lot of anxiety prior to the surgery and have been VERY upset that the problem is still here. I'm not sure what could have been done differently, but the doctor reassured me multiple times that the surgery would take care of it and it hasn't!!! I never even thought about the damage to the nerves being permanent.... Good thing to ask!! I will keep you updated for sure!! It is just crazy..... Having the ablation was so easy and seemedl like it was perfect, all I did was talk to my original doc and look at a pamphlet!!!! That decision had turned my whole world upside down!!!! Its so frustrating and just seems so WRONG, that these doctors can do procedures that are life altering without blinking an eye and your left being treated like YOU'RE the problem!! I'm so sorry that you are dealing with this too!! I'm glad that you are gathering more info even after t your diagnosis!!! I will definitely let you know what I find out at my next appt!!! This diagnosis is AWFUL!! I'm determined to stick together with other women going through this, and really would love to try to get all of this somewhere where it could make a difference! Very scary to find so many of us suffering and no one really able to help!!

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Originally Posted by Irishdancegrl Oh, and to answer your other question...I take 2 Vic a day (which I hate!), cry daily (sometimes multiple times), pain is always there...it just changes in intensity. And I feel like sitting on the couch/laying in bed is worse on the muscle weakness, but I'm hurting so much I don't have a lot of options some odays. Some days I don't even want to leave my bed!!! Today I did get up and took a shower and went grocery shopping with hubby and daughters. So, at least I got outside the house!

Oh honey I'm so sorry!!! That's how I was!! The pain was constant!! Ours more than frustrating when your day consists of which activity you are able to cut out if need be. Before surgery if I went to work then I was pretty much done for the day. This is no way to live.... I'm so sorry!!

Hey, quick question....just thinking out loud.....they didnt take out your tubes? Could they still be causing you pain? I know you mentioned they opened them up, did they stitch them? Where is your pain currently? Still in back/low AB/buttocks/thigh? My pain has been constant since August. I really think a group of us need to band together and form some type of foundation for these women. There will be more!! At least then when I am on disability from my current job because the pain is still there we will have something we can be proud of!

Lol... Right? It starts to feel like that's where it's going to end up!! They did not remove my tubes.... That was another thing I was going to ask the doc. I believe it was just the uterus, and I wanted to ask him if there would be a difference if even the section of tube going up to where the tubal was done would make a difference if it was gone. My pain is like menstrual cramps and it us on both sides.... Like where the ovaries are. That is where the pain has always been. When it was horrible again, a few weeks ago, I think it may have been my body going through a menstrual cycle. It was bizarre because I could feel that there was nothing in the middle because of my uterus being gone, and the pain was radiating back into my back and my legs..... Like it was confused and didn't know where to go. The next day was also HORRIBLE.... My abdomen along both sides where your thighs meet your body were visibly swollen. I had an appt the next day and he said swelling was actually due to my bowels and how everything was reacting to the pain. That day I went in however the pain had lessened and it was actually one of the best days I've had! Then it just went back to being the same as it was prior to that episode. There is no rhyme or reason to any of it.... And never has been. I have discovered that vacuuming seems to irritate everything since this surgery.... That was something I did that time when things flared up ad well. The nurse keeps telling me that I'd I'm have pain it's because I'm doing too much.... But after six weeks following the surgery I should be able to do more than walk around my house!!!!! I'm reading on the recovery thread about women being back at the gym!!! I actually stopped even going on there..... Stupid huh? I I'm jealous that this diagnosis isn't just cut and dry like so many others!!

It's funny that you mention vacuuming bc I seem to be really bothered by vacuuming also. I can't even imagine reading about how well everyone is doing and feeling like you're still at square one. And also feeling like what else do I need to do to help this. I am so worried some days that my husband will want to leave me bc this isn't the life we envisioned together. My girls suffer because I am Moody and cry often....because I don't understand how this could happen to me. I am currently also doing pelvic PT to help strengthen my pelvic floor before doing surgery. Initially the dr thought that it probably wasn't one clear cut diagnosis, that there could be a mixture of a few things...like a hernia in my C section incision. I definitely only have right sided severe pain/cramping, however my left side has some weird things going on too. Like I really hurt at my bikini line and sometimes underwear hurts. Does that make sense? I don't know if that's from abdominal pressure from a heavy uterus, but why only left side then? I get weird twinges of pain in my left leg, just odd stuff. I get lots of muscle twitches in my legs/buttocks...i assume from a compressed nerve. Nothing makes sense. I think that's why I'm more inclined to think its more than just the PATSS stuff. I have been keeping a list of things to ask the dr next week. When it first started it was only right side, a couple hours then I was fine until about 18-24 hours later. Now, it's never ending. Did you get a pathology report back? What did it say?

He never said anything about the pathology report.... In fact he never really finished a complete sentence when I asked if they found anything else, he just said "you can't see pain". Which on one hand made me happy that he wasn't going to harass me about telling him I was still in pain, and on the other hand leads me to believe there is more going on than PATSS. I never had any twinges if pain, but on another website I have followed called Steady Health, there has recently been someone explaining that same kind of thing. Mine has always been consistently the same kind of pain, which feels just like menstrual cramps, it just fluctuates in intensity.