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another new girl on the block ! another new girl on the block !

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  #1  
Unread 01-25-2002, 08:50 AM
another new girl on the block !

Hi, my name is Tami and I am new to this board. What a wonderful site! I gave a bit of history in a previous post, but I’d like to do another quick one for your reference:

Appendix burst at age 12, resulting in damage to my right ovary and the formation of severe adhesions, told by doctors then that I might have problems conceiving a child due to the damage. Fast forward 15 years…dh and I tried to conceive on our own for a while, then to a specialist, diagnostic Lap surgery (10/99) confirmed that my right side was “a mess” and also stage IV endometriosis. Dr cleaned up the left side as best he could; then we did a few cycles of ovarian stimulation combined with insemination in an effort to conceive – no luck. A few months later, I miscarried at 7 weeks and during an ultrasound, Dr found a “bad” cyst – endometrioma – on my right ovary, so another Lap surgery (8/00) to remove that, also found that adhesions had grown back so bad that my uretha tube (??tube that runs from the bladder to the urethra??) was twisted and stuck to the adhesions, so removal of adhesions to free that up . I am now 33 years old, my husband and I have accepted life as a childfree couple and will not pursue any additional efforts to have children. I have been to my regular GYN twice in the past 10 months for pain on my right side, although ultrasounds reveal that at least there is not another cyst. Also, painful cramps, yucky BMs (sorry –yuck), etc associated with each period.

I am now schedule for an appt with my GYN on Feb 1 to discuss what to do to put an end to this. I am ready for a hysterectomy (both the specialist and my GYN have already mentioned it to me), but would like to keep my left ovary so as not to have to go through HRT at this time. I have read through most of the helpful links for questions to ask my Dr and feel prepared to discuss options with her.

The concerns I have that I would like your input on are these:

From what I have been reading, it doesnt appear as though a hyst. will solve my adhesion problem. Should I seek a specialist who can both perform the hysterectomy AND remove adhesions? After already undergoing 3 abdominal surgeries, I would like to try and avoid any more :~)

Although my appt is Feb 1, I couldn’t possibly be able to have surgery for at least another 3-4 months . (work, other obligations, etc) . I know that I am fortunate that I have the option to wait, as so many women need it ASAP with no time to plan, etc. If possible, I might also try and wait until next year when I could have short-term disability help supplement lost wages while I am out (unless I can still get it this year). So if my Dr does recommend a hyst, is the wait just terrible? I’m thinking I’d use the time do more research, perhaps seek a specialist, etc.

Also, should I post in another forum until I have an actual surgery date set?


Thanks so much for taking the time to read this. I know that I will become a more frequent visitor once I get more info from my Dr next week.
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  #2  
Unread 01-25-2002, 10:41 AM
WELCOME...

HI TAMI,

I UNDERSTAND THE PAIN YOU ARE IN,I WAS IN LOTS OF PAIN FOR MAYBE WHAT SEEM TO BE A YEAR OR SO...

I ALSO, HAD VERY BAD ADHESIONS, RIGHT OVARY ATTACHED TO MY INCISION FROM A C-SECTION. A YEAR AGO I WENT IN AND HAD MY HYST. NOW I AM BACK TO HAVE MY OVARIES REMOVED BECAUSE THE LEFT ONE HAS CYSTS AND ALL THOUGH THE RIGHT ONE DOESN'T THERE STILL MAYBE SCARRING ON IT, SO HE'S GOING TO TAKE BOTH. SO I WON'T HAVE TO GO THROUGH SURGERY AGAIN...

GOOD LUCK TO YOU...

ALISA
  #3  
Unread 01-25-2002, 11:32 AM
Welcome!

Hi, Tami! Welcome to HysterSisters! Yes, this is a wonderful site, isn't it? Sorry to hear you've gone through so much pain and surgeries in the past few years. I'm not sure about having a specialist in adhesion surgery do your hyst, but it probably is worth checking out to see if there is a dr with that expertise in your area. Maybe that dr could assist your Gyn? I guess it depends on how much pain you're having and if you're willing to wait another year dealing with it, whether you have a hyst sooner or later. It sounds like you are doing your research and it probably would help you make your decision by having a second opinion by another dr. You can post questions or comments anywhere you like here! You also might check out the Aching Hearts board where other women who could not conceive are sharing their sadness and comfort. Hugs and best wishes!
Ruthie
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  #4  
Unread 01-25-2002, 12:19 PM
another new girl on the block !

You have certainly been through so much. One thing that I saw in your post that I wanted to have you think about is the problem you are having with your stools when you have your period. I know you had extensive endometriosis, so wanted to throw out there that maybe you should have your doctor look into possible endometriosis involvement with the bowel. I had problems with my stools and all with my periods and just was told I had irritable bowel syndrome. They looked inside my colon and couldn't find anything to cause my regular problem each month. It wasn't till I had a CT scan in 2000 that showed a mass on my colon and they still didn't see anything inside. My endo doctor recognized it right away in 2001 as endometriosis on my sigmoid colon. This area seems to be a common area for endo when there is bowel involvement. I just had an MRI to see if the mass is still there, and sure enough it is still there. My regular GI doctor apologised to me, and said that now all his patients with irritable bowel syndrome will be looked at more closely, and he will see if they have a history of endometriosis. My pain and spasms in my colon have progressed over the years to such severity that I actually pass out from the pain when the endo is bleeding on the colon and causes severe spasms. You may not have this problem, but I think it is worth bringing up to your doctor. I'm glad that when I will have my hyst that I will have a colon surgeon in the surgery to do a bowel resection and I can hopefully have normal function again. I wouldn't want to have my hyst and have the endo mass stay on my colon to still possibly cause problems. I went to a general surgeon who said he wouldn't take the endo mass off because the hyst, and not having the estrogen anymore, would keep it from causing me problems anymore. But the second opinion, who I saw is an actual colon surgeon and said that was not true, and it needed to be removed off my colon. I wish you the best and hope most of all that your suffering will be over soon. I also, wanted to say that a friend of mine had a TAH/BSO when she was 25 years old because a ruptured appendix messed up her entire reproductive system. My friend is in her 50's now and her and her husband have been having a full life and are more in love now then ever despite being childless. She has several godchildren, my 6 year old being one of them. She never would have known it but her brother later became disabled and she had to take in his two children to raise when they were teenagers, she has been so wonderful for those kids and is like a mother for them. She said that God works in mysterious ways. I'm not trying to gloss over your great loss, as my heart goes out to you in your wanting to have children and it didn't come to pass. If it helps just a little, we hyst sisters care and we wish you health and happiness always
  #5  
Unread 01-25-2002, 12:45 PM
another new girl on the block !

Thanks so much for your words of encouragement. Jerianne, thank you so much for sahring with me about your friend who is also childfree due to a ruptured appendix. I, too, believe that God must have something else in store for me and it is so great to hear how everything worked out for your friend! I didnt realize that CT scans and MRIs can show adhesions, so I will bring that up with my Dr. And I most certainly will discuss my concerns about my current and possible future bowel, bladder problems.

Thanks again ladies, I love this site!
  #6  
Unread 01-25-2002, 01:17 PM
another new girl on the block !

I'm so glad that our replies could help you in some small way. You deserve a lot of care as you are going through so much physically and emotionally right now

I don't think that the CT scan or MRI scan will show adhesions, but they will show if you have a mass of endometriosis on your colon. Sometimes the doctor said that you can have endo on your colon and it won't even show on the CT or MRI as it may not be large enough yet, but could still be there and still cause colon symptoms such as you are having with each period. Your doctor may want to pursue looking into possible endo on the colon since you are having bowel symptoms that correlate with each period.

I hope you will get all the support you need to get you through this rough time, and health and many smiles are in you and your husband's future
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