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Is it OK to use this forum? Is it OK to use this forum?

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  #1  
Unread 05-21-2005, 12:33 PM
Is it OK to use this forum?

Hi...

I suffer from chronic pain that was made a lot worse by my 2 surgeries. I can't really say that it's hyst related, as the pain is not pelvic, not related to incision problems, nerve damage, adhesions....I have chronic myofascial pain that was made worse by my LSH and trachelectomy surgeries, though.

Is it appropriate for me to participate in this forum? Or must I remain a lurker? My pain is in the knees, back, neck, shoulders....I'm starting to consider myself disabled.

I'd like to interact with sisters around pain issues, but will understand if this is not the appropriate place to do this.

Thanks!



Margot
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  #2  
Unread 05-21-2005, 07:23 PM
Is it OK to use this forum?

Hi ((((Margot))))) I'm so sorry you're sufferring in such a way

You'll find that there are many of us who were either dealing with the same issues pre-hyst or are dealing with issues that are not necessarily directly caused by the hyst. In most cases, as in your case, the hyst made the symptoms worse or was a trigger for the condition. Futhermore, you'll see that there are others who are either sufferring from myofascial pain or investigating the possibility that they may be. So yes, you may post here

I do hope that, eventually, you find relief for your pain
  #3  
Unread 05-23-2005, 10:24 PM
Is it OK to use this forum?

Hi, Margot! Just wanted to post to offer you some s and support and ask you a few questions, if that's ok.

My gyn wants to do a trachelectomy, too, and I won't let him just yet.

Can I ask why you had the TOT? Is that a type of bladder support operation? I've had a lot of bladder pain and a few UTI's since surgery. I also supposedly have a chronically strained obturator although I wouldn't say I am completely confident with that diagnosis.

Have you been able to see a dr about your pain issues? I wish you felt better!
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  #4  
Unread 05-23-2005, 11:36 PM
OK to Use This Forum

Hi Margot,
I just sent you a PM. You may remember my posts about my horrific expereince with LSH and my now constant pain issues. I would like to discuss this fibromyalgia syndrome with you, but my experience with LSH is so very NEGATIVE that I hesitate to post on the board. I think some sisters would prefer that totally negative posts about hysterectomy be limited and I want to be sensitive to their concerns about too much negativity. Please let me know if you're ok about receiving PMs.
westcoast
  #5  
Unread 05-24-2005, 09:42 AM
Is it OK to use this forum?

(((westcoast))) I'm sorry you feel you aren't able to post openly about your problems with your LSH. Please be assured that your experiences are every bit as valid as those of members who have had positive experiences, and we welcome both types of posts on the boards.

Additionally, our site guidelines do say
  Quote:
Please keep all support offers within the public confines of the posts and threads. You may not ask the members to email you for support issues. Public message boards provide that many will receive support even when lurking. Suggesting that members email so that you can provide information is considered solicitation.
IMHO it's perfectly appropriate for you to post here about ongoing problems with fibromyalgia since your hysterectomy; taking such a conversation private would deprive others who might be having similar difficulties of the support they may gain from reading your posts

(((Margot))) I hope you'll find great support here for your ongoing concerns.

s,
-Linda
  #6  
Unread 05-24-2005, 11:28 AM
Is it OK to use this forum?

Yes, Linda, I am finding support and it's very exciting. It's restoring some hope!

Westcoast: I do understand about your hesitation to share your awful LSH experience. I think that the keeping one's cervix, and the LSH in particular, has become a controversial topic. (Which is why I tried to get a thread going yesterday, where sisters who *didn't* fare so well could share their experiences without it turning into a debate). I've shared various pieces of my story many times over on the boards. Usually I get a lot of sympathy, but with it usually come several posts by sisters who, I think, are concerned that others will be turned off by to the LSH. So, they lists all the positives. That can feel overwhelming, can't it? And not so supportive.

I really encourage you to share those awful experiences. The other women really need to know about *all* the possibilities so that they can make more informed choices. I know that I went into my LSH without being aware of the possibility of the negative outcome that I ended up with. So, I think that sharing your experience is really a public service! You just have to be ready for all the posts that will follow from women who have had all positive experiences. Lucky them. It doesn't make your experience any less valid.

And, please don't let your LSH experience stop you from participating in chronic pain discussions! You need and deserve that support!



Margot
  #7  
Unread 05-24-2005, 11:40 AM
Is it OK to use this forum?

ChurchieD...

Whe did I have the TOT? I had some stress incontinence from my pregnancies and a very slight prolapse of the urethra. I have to admit that I don't really know that much about it. Since we were doing the trachelectomy anyway, I opted to have it done since it's a simple procedure that only takes about 15 minutes. I was too lazy to do all the kegels that are necessary to stop the incontinence!

Why don't you want to have the trachelectomy (besides the obvious reason of not wanting more surgery? ) Why is it being suggested?

You can do a search on the procedure. And later in the day when I have more time I'll dig up the link to a thread where a bunch of us had the procedure. Luludelane seems to have a very good grasp of what it actually is.



Margot
  #8  
Unread 05-25-2005, 09:29 PM
Is it OK to use this forum?

(Margot) Sorry to hijack your thread! Have you been able to get any help with your pain issues? You said the LSH made your myofascial pain worse, did you have a surgery before that that started it?

I don't want the surgery for a couple of reasons:

one, I don't know how much it is actually contributing to my pain, it could be bladder related

two, if the adhesions have come back I'm afraid of getting more, and this would be one more opportunity to get more of them

three, the main reason the gyn suggested it is when he lysed my adhesions he said the stump was abnormally large and he had kind of a funny look on his face when he said it, kind of like when you find a really ugly bug. Hey that's my bod yer talking about there There is no abnormality--I've had an MRI and two transvaginal US's.

four, the main reason he wants to do an abdominal procedure is because he just doesn't know what the thing is in my right hip and he was not going to mess with it laparoscopically. He would go in through my C-section scar, no biggie since I've long given up my bikini days anyway, but it is six weeks off of work

five, if I keep my ovaries, I could still have the right sided cyclical pain

six, prolapse issues although I know it can happen even under the best of circumstances

seven, sexual response

He did agree to try Celebrex to reduce adhesion formation, so that is a definite plus. DH wants me to go to Mayo, which I think would be a waste of time and money and just a bit of overkill. Plus my insurance won't cover it without a huge fight. I am starting to think the best thing to do would be to ask my gyn to have another dr look at the pictures he took of it and see what they think.

(Westcoast), I haven't been to the board much until now. I'm sorry to hear you had such a miserable experience. Mine wasn't real great either--whoever calibrated the PDA morphine pump didn't turn up the dose high enough so I went pretty much the entire night with no pain relief. That's for starters....
  #9  
Unread 05-26-2005, 03:55 PM
Is it OK to use this forum?

Hi, Church Lady...

It's bad enough that they call it a "stump" to begin with...and then he insinuates it should come out because it's not pretty?! I loved your description about the look on his face! I can see why you're holding out. Having another doc look at the pictures seems like a really good idea to me.

No, the LSH was my first surgery. Actually, I take that back. I did have a c-section 4 years ago. I've had problems with my back, kness and shoulders off and on for 20 years, but now it's worse and it's always on. I mention the c-section because I was working with a PT after my LSH and before my trachelectomy, and his theory is that many women who have had c-sections develop myofascial pain in their backs. It has to do with things not lining back up correctly after the surgery, which causes the fascia to pull in odd directions. He did a lot of deep poking on sore places on my tummy and stretching of my scar. He also pushed and pulled my legs around like a Chinese acrobat! It really hurt, but I think we were getting somewhere. Then came the second surgery and I had to stop.

I've got an appt with a new pain doc tomorrow. Wish me luck!



Margot
  #10  
Unread 05-27-2005, 09:06 AM
Is it OK to use this forum?

ChurchieD:

It is best to exhaust all possibilities before surgery so that you don't wonder later if you should have tried this or that. Second opinions are always in order if you have any doubts and hey, you have many. GO for it!

I did want to say that I do not miss my cervix at all. DH would regularly bump it and it was sensitive. I had several abnormal pap smears and the path report enumerated several problems, so its better being outta there.

I have to say that in general, the Os are better for me post hyst. I truly believe that attitude is most critical regarding sexual response. You have to feel sexy to enjoy sex. If you feel somehow incomplete, your enjoyment will be lessened.

Why do I share all this? I don't want you to stress over the loss of your cervix, if it comes to that. I guarantee that if you believe that you can not have a quality orgasm without a cervix, you'll be right.

Best wishes to you on a great outcome! Do get that second opinion. Your 1st opinion should welcome that.

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