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Where do you turn, and when do you just give up? Where do you turn, and when do you just give up?

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  #1  
Unread 10-06-2005, 01:49 PM
Where do you turn, and when do you just give up?

Hi Ladies, I have been to a total of 7 doctors since all this started two years ago. After a TAH/BSO, which I know in my heart that I didn't need (no second opinion, really stupid) I still have this constant, sore abdomen, and a "pinching" feeling on my lower left side. IVP-dye, CT scan showns nothing. Every day, around 11am, I have "bubbles" in my urine. Went to a uro.gyno who basically pushed me off to an endo specialist, who pushed me off to a natural doctor. So for 8 months the only dr I see is my chiro, who at least makes me feel a little better. But I feel that I HAVE to do something! Every woman I know that has had a TAH felt fine at 6 weeks!!!! So, where do I start again? Do I start again? Do I just stay away from tight pants, eat motrin like candy, and pray that I can sleep when the day is done? (insomnia an another great result of the BSO!) I have to work, and sitting at the computer all day makes it worse. I have even brought my husband with me to some doctor's appt., and have written down long lists so I don't get scared and forget things. My husband is also getting sick of this, as it has a very negative impact on our sex life. So, I guess I'm babbling, but I would like to know how many other's feel this way, and how many have finally given up! I wish I could turn back the clock and never of let them do this to me. Mentally, I have a hard time with that one. I don't have any faith in doctors anymore.
Thanks for letting me vent.
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  #2  
Unread 10-06-2005, 03:37 PM
Where do you turn, and when do you just give up?

I would not give up yet, I am open to acupuncture, and maybe that will help you. I know that your husband wants to see you at peace and settled. Have you tried hormones? Many women swear by those. I personally chose not to go that route, as my DR said he did not see a need. I have my ovaries, though they do not work up to speed anymore, so I understand most of what you are going through regarding the insomnia and intimacy change.
  #3  
Unread 10-06-2005, 04:17 PM
Where do you turn, and when do you just give up?

(((whatsnormal)))...

I don't blame you for not having faith in doctors anymore, given what you've been through.

But, IMHO, I don't think you should give up. Those symptoms have to be coming from somewhere! What was the reason for your hyst in the first place? I know you say you now don't think it was necessary, but why did the doc want to do it?

Have any of these docs given you *any* explanations for your symptoms? Do you have any friends who just *love* their docs? It sounds like your chiropractor is nice, but they don't really diagnose. I would ask all of your friends for referrals. Check here at HS if there is anyone near you with a doc that they like. Maybe they could PM you with a referral.

Your life sounds horrible, and is completely unacceptable! And eating that motrin like candy is going to hurt your liver! Keep in mind that if a doctor doesn't know what is causing your symptoms, that is *not* your fault. You just haven't found a doctor yet who is willing to leave no stone unturned and he or she figures out what's going on.

I that you are able to find one. Please don't accept your life as it is...you deserve better!



Margot
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  #4  
Unread 10-06-2005, 04:35 PM
Where do you turn, and when do you just give up?

whatsnormal,
As you can see by my signature I vow to Never give up!! Thats Not to say, I don't have my low moments, cause I do...but I have to believe there has to be hope! I am 7 years post-hyst/bladder sling, I've had many set backs, and now after 7 years I have recently gotten a glimmer of hope again..but once again I also have a pretty major setback!! Anesthesia is a huge issue for me at this point! And now I have exausted my chances of haveing another surgery in this town!! We have 2 hospitals and I've had two very bad reactions to Anesthesia..one at each!! So Now NO ONE will touch me surgicly here! But I'm now headed for Alabama to a Neurologist to hopefully figure out these Anesthesia issues so I can have the gall bladder surgery. I was told by my last surgen that I need to have any surgery at a major medical facility given my anesthesia history.
So I totaly understand the frustration...I had a glimmer of hope for my bladder situation...but now the Anesthesia issues are hampering any hope of that!! So I am going to choose to look at this a yet another "setback" but I will Never give up!!
Have they ever thought of adhesions being the cause of your pain!!? And the fact they cannot be detected on any type of scan or x-ray?? They make it sound like we women "LIVE" for surgery or something!! I can only say that when you hit a brick wall sometimes you have to climb over or take the long way around it! As I said I understand your frustration, but don't give up. I have been very fortunate with the Doctors I have at this point. I have a great GP, Urologist and Neurologist who are very compationate! But as I said it's taken many years to find them!! I'll say it again...YOUR WORTH the frustration, agravation, money and time...to feel your best!! Take care...Netty
  #5  
Unread 10-06-2005, 05:33 PM
hi again

Thanks Ladies, I am soooo frustrated!! The reason for my hyst was I had a cyst on my fallopian tube. Very painful. Had a lap to remove it and the doctor told me I had a lot of endo in there. Well, I NEVER had any problems with endo, had a period every 26 days, no cramps, no heavy bleeding, nothing. After the lap to remove the cyst, I continued to have this left sided "pinching" pain. He convinced me it was the "endo" and I should have everything removed. Like a fool, I just believed him, and did it! Well, two years later that same pain in there, along with what they are calling myofacial abdmonial wall syndrome or some thing like that. No real answers. You would think that the uro/gyno would take the time to look in my bladder, as I also have microscopic blood in my urine (have had it for ten years!) but she said since the IVP test was fine, there was no reason, so she sent me to the endo guy, who said it was scar tissue. I really think, since I already had the surgery, nobody wants to bother with me anymore. I'm sorry to say this, but I believe a lot of this is money driven. Or they just don't want to fix someone else's mistake. And I can't get ONE of them to admit that there was a mistake!!! The doctors seem to protect each other alot. I think maybe I should find someone like at least 75 miles away, and start fresh. The thought of going through all this explaining all over again to a new set of doctor's, and probably being blown off again in daunting. I tend to be very shy, and not at all pushy. It is easier said than done that I should become more assertive. They are the professionals, they should come up with the solutions!!!!!
  #6  
Unread 10-06-2005, 07:44 PM
Where do you turn, and when do you just give up?

s to you. Don't ever give up. You deserve better than this.
I had bm problems right after my hyst. I've had all kinds of tests and seen several specialist. I even had a lapro last Sept for what the dr thought was adhesions causing my problems. It wasn't. I kept pushing for answers.Then I developed bladder problems.I went to a uro/gyn who is well known. I just knew he could help me. I told him about the gurgling and thumping and abdominal pain issues that I have had since my hyst. He did my tvt and anterior repairs 3 weeks ago. Next week he is doing some more things to see what is going on and causing the above problems. It took me a long time to find the right dr. to help me. I even had some unneccessary tests done, since none of this ended up being colon related. You just have to keep pushing forward. I am usually the very quiet one too, but last week it all came out. He could see my frustration and I even cryed.
Sometimes you have to to make these dr's listen.Good luck and hang in there. You are worth it!
Peggy
  #7  
Unread 10-06-2005, 10:03 PM
Where do you turn, and when do you just give up?

Hey Girl, I hope you "never say die!!!"Relate to your
situation, and have looked back many times wishing
I'd never gone ahead with the hyst. Still battle
depressed moments
What helped: Hope in Jesus!
-Acupuncture for edema, tho it didn't totally eliminate-
-Bio-identical hormones for mental well-being and better sleep, better body function--wish this would have been my first move instead of 3 years post op.
- Betaine HCL for intestinal pain/bloating
-Enzymes for digestion/bloating
-Serrapeptase for pain--stuff is really amazing!!
- Dr.'s hoslistic products for rejuvenating the gallbladder
And yes, at times I still want to lay down and die. Hyst was truly my life's worst mistake. You are not alone. Hope the docs in AL can help you. O btw, also had
the bubbles in urine for a week or so recently. Just went away..Urine checked out ok. Drinking lots of Gatorade made with purified water.
  #8  
Unread 10-07-2005, 06:53 AM
Where do you turn, and when do you just give up?

(((Whatsnormal)))

I'm truly sorry that you are still experiencing problems! It's so hard, when you expect everything to be perfectly fine after the hyst. And although I do not regret having my hyst, I understand your frustration! Sometimes I think of how my life would be different....but I know that my quality of life was sooo poor before the surgery - that there's no way I could have maintained that level of pain/problems. But since I still continue to have issues 3+ years later, I have been bounced around from doc to doc, too. I love my GYN, but she has admitted that she doesn't know what to do for me. I'm in Pain Mgmt now - which is helping tremendously. I can go to work - I can play with my son - I can "enjoy" my DH. In the meantime, I have to wait until someone figures out how to keep my cysts from growing - and how to keep my adhesions from forming. I know what you mean about just wanting to throw in the towel sometimes. It's incredibly frustrating to be in pain - and not have any idea why....and feel like nobody wants to listen to you. But I would strongly encourage you to keep pushing. You have a right to live pain free. And you are entitled to as many doctors appointments as will yield you some answers. Maybe it isn't a bad idea to go out of town to see a specialist. Who knows - it could be the key!

Wish you all the best!
s
Cortney
  #9  
Unread 10-07-2005, 04:35 PM
Where do you turn, and when do you just give up?

((((Whatsnormal))))) I'm so sorry you've been having such a hard time since your hyst.

I had my hyst almost 5 years ago and am still having issues. While I do not regret having the hyst, as I know that my quality of life was much worse back then than it is now, I can't help but wonder how things would be if I hadn't needed a hyst

My main problem is that, as in your case, all the tests either come back negative or do not show enough to warrant digging further. In the end, it makes me feel as though it's all in my head

I also have had minute amounts showing in my blood for the past 6 years. As in your case, the IVP came out clear so nobody is pursuing it further. However, I feel as though some of the issues I'm dealing with could be related to my bladder.

I also suffer from terrible insomnia and I know that it's due, in parts, to hormonal issues. Unfortunately, my doctor is reluctant to prescribe HRT. One thing I've found very, very helpful is to take either St-John's Wort or Valerian Root. Both not only help me sleep, but also take away the edge I sometimes feel during the day. Before taking any of these things, please be sure to check with your doctor as there could be contra-indications in your case.

It's all very frustrating but I don't think quitting, at least for me, is an option: I owe it to myself and to my family to keep looking for answers.

I do hope that, one day very soon, you'll find a doctor who will have answers for you.
  #10  
Unread 10-07-2005, 04:48 PM
Where do you turn, and when do you just give up?


I was six years post op in May and each day is still a struggle. I have found some clues here and there and do have some good days now. But it is still a struggle. I am in pain mgmt and also see an accupuncturist. If I had given up, I wouldn't have found these two wonderful doctors who continue to help me in looking for the ever elusive answer. My accupuncturist told me that I am her most difficult case. Oh lucky me....NOT!

Please don't give up. While I have thought about just giving up many times, in the end that's just not a good idea. I have taken breaks from the doctor go round a few times, and than come up swinging and ready for another round!

I do know it's extremely frustrating. I know I am always waiting for the other shoe to fall. Two years ago I had to have surgery on my sinuses and now I'm scheduled for foot surgery in two weeks. With the stomach problems and pain issues, the last thing we need is other parts of other bodies to fall apart.

Hang in there my Keep looking for answers and know that you have friends here who truly do understand what you're going thru.
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