ADHESIONS ON UTERUS -SURGICAL ISSUES

[lolly818]

I'VE BEEN SUFFERING FROM STABBING PAIN IN MY LOWER PELVIC REGION OVER THE LAST WEEK AND A HALF. IT'S SO BAD THAT IT FEELS AS THOUGH A KNIFE IS SAWING AT ME WHENEVER I MOVE, SORRY, IT'S THE BEST ANALOGY I CAN COME UP WITH FOR COMPARISON.

MY DOCTOR IS FAIRLY SURE THAT THIS IS ADHESION PAIN FROM PREVIOUS LAPAROSCOPIC SURGERIES THAT IS TETHERING DOWN MY UTERUS TO AN ORGAN BEHIND IT.

WHATEVER THE ISSUE, IT'S CAUSING A HECK OF A LOT OF PAIN.

MY ISSUE IS PRETTY BIG ACTUALLY. FIRST, WE HAVE TO GET THE PAIN UNDER CONTROL, WHICH REQUIRES MY INVOLVEMENT WITH A PAIN CLINIC. I HAVE THAT PART JUST ABOUT TAKEN CARE OF, TOMORROW I WILL SEE THE CLINIC FOLKS AND SHOULD START THAT. THE SECOND PROBLEM IS THAT THE PAIN MANAGEMENT IS JUST A BANDAID TO THE REAL PROBLEM. THE ONLY WAY TO REMOVE THE PROBLEM IS SURGICALLY.

I WAS GOING TO GET A HYSTERECTOMY ANYWAY DUE TO SOME PRETTY NASTY ENDOMETRIOSIS PAIN, BUT THIS JUST MAKES IT EVEN MORE IMPERATIVE THAT I DO SO QUICKLY.

THE FINAL PROBLEM, I NEED AN OKAY, A CLEAN BILL OF HEALTH, AS IT WERE, FROM MY NEUROLOGIST, TO BE ABLE TO GET THIS SURGERY. I'M CURRENTLY WITHOUT A NEUROLOGIST AND AM IN THE PROCESS OF GETTING A NEW ONE. THIS CLEAN BILL OF HEALTH MIGHT COME AT A COST, I MIGHT SACRIFICE MY ACTUAL HEALTH BY GETTING A MEDIOCRE EXAMINATION BY A NEUROLOGIST INSTEAD OF GETTING THE DIAGNOSIS THAT I'D HOPED FOR. MY PCP AND MY GYNECOLOGIST ARE PUSHING FOR A SURGERY YESTERDAY, BUT I CANNOT GET THIS SURGERY WITHOUT CLEARING THEIR MIND OF POSSIBLE DOUBT OF MY HAVING MS.

I'M FAIRLY SURE I HAVE MS.

SO THE PROBLEM IS, SHOULD I HAVE THIS SURGERY, AND ASK THEM TO JUST BE OVERLY CAUTIOUS AND DO IT AS AN EMERGENCY SURGERY? -IF THEY'LL EVEN DO THAT! OR... WAIT THE MONTHS TO YEARS FOR THE POSSIBLE DIAGNOSIS THAT MAY OR MAY NOT COME BEFORE I'M ALLOWED TO GET THIS SURGERY.

IT FEELS LIKE IT'S ALL CONTINGENT ON MY GETTING DIAGNOSED WITH MS. WELL PHOOEY ON THAT! IF ONLY ONE DOCTOR WOULD LOOK AT MY DARNED MRI THEY'D SEE THAT I HAVE ACTIVE LESIONS AND THEY'D KNOW THAT FROM MY HISTORY I'VE HAD MULTIPLE EXACERBATION AND THEN WE COULD PUSH FORWARD WITH CAUTION.

I FEEL OVERWHELMED BY IT ALL.

[photomama]

First of all ((hugs))

Second of all- I went through a hysterectomy while in limboland (I'm still in limbo, technically). It can be done. Your doctors just need to be reassured that you are ok for surgery. Even with a diagnosis of MS, you can do a surgery. The only things (and this is for ANY diagnosis) is that doctors need to be more aware because of new (or possible) diagnosis. Anesthesiologists need to know because of possible respiratory issues (which is rare). Doctors need to know about mobility issues. And they need to know whether you have ever required the use of IV steroids before because your neurologist may choose to have you do them after surgery (most of the time *not*). This was how it was explained to me.

That said- I went through 2 surgeries (endometrial ablation, which was cake), and the hysterectomy and my neurologists didn't have an issue. It isn't really anything to worry about.

The surgery itself *can* bring on a flare, which is why it is good to be under the care of a neurologist. So if you have questions or need to have treatment for a flare after post-surgery, then you can. It can be an ambiguous time, because everyone feels pretty awful after a hysterectomy. My biggest problem was fatigue and balance, but I have those issues anyway. I never needed anything, just rest...and to remember that it may take those of us with health issues longer to recover than those without health issues.

Having the hysterectomy was one of the best things I have ever done for myself. The recovery was *not* fun. But in the end it was so worth it. No more pain, no more bleeding all the time. No more worrying. And I realized how AWFUL those symptoms were making me feel (on top of the MS symptoms). It just combined with everything to make me really miserable.

If you haven't already- check out the hystersisters site. They have a lot of info and lots of questions are answered for hysterectomies.

Don't be afraid to ask your doctors (all of them- gyn, neuro, everyone) questions throughout the process. I found mine to be extremely helpful when it came to the surgery.

[RonPaulaD]

I'm currently home recovering from my total hysterectomy on1/26. I was just diagnosed with ms in November and started Copaxone 1/19. Fortunately, I haven't noticed any difference in my ms. Maybe a little spasticity in my left leg because I don't move around as much as usual. Hope things go well for you.

Paula

[Cardee]

Hello!

Funny that this thread comes today, as I will have an exploratory laparoscopy on Thursday to look for adhesions and/or endometriosis. I have been suffering for 15 months from lower back pain. Last May, my doc thought it was a hernia and asked for a MRI of my back. That's when they saw lesions on my spine.

So I was dx with MS in July. I intended to begin a treatment with Gylenia but I have to wait until after the surgical intervention. Two weeks ago I had a flare (dumbness in both legs and belly), not treated. My neuro gave me the ok for the intervention all the same. With luck, I won't have another flare post-op because it will not be a month since the last one (if I have understood the occurrence of flares...)

Well, all this story to tell you the surgeon is not worried about my MS more than that, so I do not worry either! I hope that taking the thing positively will do the trick and prevent any disaster. 😉

I wish you nonetheless that everything goes as well for you as it will undoubtedly for me!

Cardi

[kif8skip]

My daughter suffers from endo and I know how awful it can be....I hope you can get your dr;s to move quickly to allow you the medical help you need.

Sending you prayers and strength for a good outcome

[lolly818]

First of all ((hugs))



The surgery itself *can* bring on a flare, which is why it is good to be under the care of a neurologist. So if you have questions or need to have treatment for a flare after post-surgery, then you can. It can be an ambiguous time, because everyone feels pretty awful after a hysterectomy. My biggest problem was fatigue and balance, but I have those issues anyway. I never needed anything, just rest...and to remember that it may take those of us with health issues longer to recover than those without health issues.

Having the hysterectomy was one of the best things I have ever done for myself. The recovery was *not* fun. But in the end it was so worth it. No more pain, no more bleeding all the time. No more worrying. And I realized how AWFUL those symptoms were making me feel (on top of the MS symptoms). It just combined with everything to make me really miserable.

If you haven't already- check out the hystersisters site. They have a lot of info and lots of questions are answered for hysterectomies.

Don't be afraid to ask your doctors (all of them- gyn, neuro, everyone) questions throughout the process. I found mine to be extremely helpful when it came to the surgery.

I'm worried a little about undergoing a surgery and getting an exacerbation. It'll be hard enough to deal with my pain and surgery, but I'll be at home alone while recouping, I can't imagine how I'd deal if i had a flare up.

[photomama]

I think having a flare due to surgery is pretty rare (just like having a flare due to getting sick, etc).

My motto was to be prepared and take it easy. Have meals prepared ahead of time (this was a biggie for me, since I had kids), people to call when you needed help with things (especially those first 2 weeks), any meds and supplies you might need ahead of time (check with your docs, but stool softeners & gas-x were on the list post surgery, and if you don't have someone who can fill your prescriptions after your surgery, ask if you can do it the day before). If you have pets that need walks or anything, ask for help with them if you don't have anyone at home to help with them.

Movies, books, and rest. Rest is just the biggie. Don't push yourself. Being prepared will help you feel the best before the surgery. Resting will help you recover the easiest and fastest. Don't push yourself to recover any faster than you can handle. Even if you don't have big external scars, you have a lot of internal healing to do.

Depending on how they do the surgery, you'll probably feel pretty yucky for the first week or two. After that you'll feel much better. It is just a slow recouperation to get your full energy back and to be able to do everything you can do (as far as lifting and stuff).

It really is worth it! Information is key- it will help make you feel better and help you prepare. Hope this helps!

[KatieDidNOT]

Lolly-

I have had surgery (female) twice since being diagnosed with MS. In fact the last one was during a flare.

I am not sure why you need medical clearance from you neuro? MS or possible MS is not a reason not to have surgery.

Sounds like your OB or PCP are blowing things out of proportion here.

Katie

[Cardee]

Hello everybody

Just to follow: the surgical intervention went well. It was a big adhesion. The amazing thing is that the numbness from my last relapse (legs and belly) disappeared when I woke up (except in my feet, but it was already like that before)

So for me the intervention has been positive entirely! I'll be able to begin with Gylenia in March!

[rdmc]

Sorry to hear about your adhesion problems.

As far as surgery goes, I've had 5 surgeries since 2007...some of them long (6 hours)...the rest under a couple hours. all have been under general anesthesia.

I did all the normal pre-op tests...blood work, ekg, and chest x-Ray. As you mentioned, the only doctor that was concerned about the MS aspect and surgery was the anesthesiologist. I had one anesthesiologist explain to me that because of MS there was the slight possibility you could wake up on a ventilator...but if that happened, not to panic it would only be temporary.

I don't think I relapsed after any of my surgeries...I do think I dealt with fatigue more, post op, but that would be expected.

All that to say, an MS diagnosis, or probable MS, should really have no bearing on your surgery.

PS. I have a good friend who's dealt with adhesions for a lot of years and she's told me the product Seprafilm is really a breakthrough in preventing more adhesions.

[lolly818]

Thanks ladies. The appointment with my OBGYN will be on the 27th where we talk about my Hysterectomy and surgery to remove Endometriosis/adhesions. And let me tell you, it can not come soon enough.

I think I may just go ahead without the neurologist's okay, because this is such a major problem for me. I've had stabbing pain from this latest, or most recent adhesion that's attached to my uterus, and now, while on my period, am noticing that I'm getting a little relief, but am suffering from flu-like symptoms from the pain, where I normally wouldn't during that time of the month. It's my hope that we can progress forward with a surgery within the next month, asap.