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More pain, more surgery More pain, more surgery

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  #1  
Unread 05-15-2003, 01:08 AM
More pain, more surgery

Hello ladies, I haven't been on this site for almost a year now. I have a TVH-BSO on 12/28/01 for endometriosis. I was 31 and don't have children so it was a definite life-changing experience on many levels, both physically and emotionally.

After about a year I was physically healed and well on my way to feeling okay emotionally as well. I was taking Cenestin 1.25 mg and Zoloft 50 mg for depression. I didn't have much of a sex drive but I figured that would come back again in time, with the proper hormonal balance. Then the pain started slowly coming back. I also started feeling symptoms of too much estrogen, such as swollen and tender breasts. Then the pain started in my lower back and right lower tummy (right where my ovaries used to be).

My husband has been very understanding but doesn't really know what it's like to be in pain while at the same time desperately afraid of going to the doctor to find out if the endo is back or not. The last time we made love I bled and was in pain for the whole night. I knew that was very wrong so I went back to my gyn. She found granulation tissue which I hear now is very common with hysterectomies altho I had never heard of it. I guess some of the tissue from my peritoneal (sp?) lining has grown out of the vaginal cuff into my vaginal canal, which causes pain. She cauterized it (incredibly painful without anaesthetic!) and we hoped it would fix it. She also was concerned about my swollen breasts and pain and suggested I stop my estrogen for at least a week to see if it makes any difference. I stopped it and it's been almost a week. I've only had 1 hot flash but my breasts aren't much better. I wonder if my estrogen levels have been too high all along?

Then I noticed I could feel a lump in my lower right side. I went back to the gyn who could also feel it. She scheduled an ultra sound. They found a 2-inch "mass" (I hate the way that sounds!). My gyn is worried that the endo is back. I am scheduled for abdominal surgery this Friday 5/16. She will remove & biopsy the mass, remove the granulation tissue & re-stitch my vaginal cuff, and make sure all my other organs look fine.
I am scared and in pain and devastated that this is back. It was such a drastic decision to have a hysterectomy and I feel that my body has almost betrayed me for having the pain again.

I have read through many of the messages here and see by the biographies that I am not alone. It is such a comfort to know there are so many women out there who know exactly what my fear, my pain and my frustration feel like. I only wish we didn't have to go through the pain at all. I am hoping that I will become one of the people replying to messages in the future saying, "I know exactly how you feel, and I'm sending you hugs!" Here's to a successful surgery on Friday.
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  #2  
Unread 05-15-2003, 08:18 AM
More pain, more surgery

liz, just wanted to send you some s and wish you good luck with your surgery. I pray that this will end your pain for good. My breaks for all you endo ladies...........God bless!


Emily s
  #3  
Unread 05-15-2003, 08:37 AM
More pain, more surgery

Hi Liz.

I am so sorry that you are going through all of this! I am 2 weeks post-op from adhesion removal as of yesterday and STILL having pain. I DO know what you are going throu sweetie because sadly I am still in pain.

I will keep you in my prayers and hope that your surgery is end of your pain. I was also scared that the endo was back and God did answer 1 prayer I made, now I just wish he would listen a bit harder for the rest of the prayers.

Please let us know how the surgery goes and we will all be right there with you in sister spirit!!

HUGS
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  #4  
Unread 05-15-2003, 08:44 AM
More pain, more surgery

Liz:

I am glad you came and posted here. I understand completely with your feeling betrayed by your body. We are way to young to be putting up with this mess. Unfortunately, we are not alone. Fortunately, there is support here.

I'm 36, so we are around the same age. I also have a history of endo. My hyst was in November. I have my ovaries. If my doc would have removed my ovaries, he would have put me on opposed estrogen therapy (progesterone being the "opposition") for at least a year before switching me to estrogen only. The progesterone is supposed to help keep the endo at bay.

As it is, I started having pelvic pain again around 2 months ago, saw my gyn a few weeks ago and get that the phrase we all hear at some point "I can not tell you exactly what is causing the pain". So much for the God complex. A little omniscience would come in handy about now. He thought at least some of the pain sounded cyclical and that suppressing ovulation was worth a try.

Anyway, we are trying continuous BCPs. My other choices were BSO or lupron. When I read stories like yours I am not in any hurry for BSO. Been on a GnRh antagonist twice before and I'd like to have some bone mass when I am older, so no lupron for me.

I had a rough first week and a half on the BCPs but now I feel much better.

Come back as often as you can and keep us posted.
  #5  
Unread 05-15-2003, 09:02 AM
I know how frustrating more surgery can be.

I am sorry you are having to have another surgery. I am one week post op from my second surgery (technically my third as my doc forgot to remove my ovaries and I had my BSO two days after my hyst, but who's counting). I am also angry at my body for betraying me and leery of being optimistic that this is it. I do feel better though and right now that is great progress from the pain I was in last week.
When I read your post my first thought was "I wonder if she has an ovarian remnant?" It could be a possiblity as to why you are having symptoms of estrogen overload and could explain the mass. But your doctor won't be able to tell until they do surgery. I had a CT scan that showed an ovarian remnant last week, but when they did surgery they did not find it. What they did find was massive adhesions and my new GYN thinks that is what they saw on the CT scan. Personally I am just tired of surgery and pain. But all I can do is live with it and carry on. I have too many responsibilities to let it beat me down. So I trudge along with each new development.
Like Pam I pray that all of this will be resolved for us all soon. Until then we will just have to lean on each other for support.

Keep us posted on your surgery and know that we are here for you.

's
Pamela
  #6  
Unread 05-16-2003, 08:36 AM
More pain, more surgery

Dear Sweet ((((((((Liz))))))))

I am sorry that I am late in offering you my support and prayers...

I was/am, one of the sisters that had the Endo come back following my LAVH/BSO. This disease is horrible....

Please remember your training when you get home. We look forward to hearing from you, ONLY when you are up to posting.

Sending you many positive/healing thoughts, and lots of S
  #7  
Unread 05-27-2003, 04:43 PM
Update on surgery

Well, I made it through another trip to the castle and am back home again! It turns out that when I had my hysterectomy my dr left part of my fallopian tube. In fact it was sewn into my vaginal cuff. When my other dr (the one I really like) saw the tissue during a pap smear she thought it was granulation tissue & cauterized it. It became inflamed, swelled to the size of a golf ball & she only found it was my fallopian tube during the laparatomy. The best news is that the endo is NOT back - it was just the fallopian tube & some adhesions on my bowel that caused all the pain. I am really sore from the surgery and feel like I've gone 40 rounds with Mr. T in one of the Rocky movies (the first fight where Sly got his butt kicked!) but I am so thankful that the endo is gone. Thank you for all your thoughts & prayers. I really appreciate the warm wishes. :-)
  #8  
Unread 05-27-2003, 06:20 PM
More pain, more surgery

good for you, Liz! Thanks for letting us know you're okay!
  #9  
Unread 05-28-2003, 06:39 AM
More pain, more surgery

I am so glad to hear that your pain was easily treated and NOT endo!!

Remember to rest and drink alot of water and PLEASE remember your training!!

Please keep us posted on your recovery and I will keep you in my prayers that it is uneventful and everything is finally taken care of!!

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