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5 yrs post op...pain is back!! 5 yrs post op...pain is back!!

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Unread 09-07-2005, 06:44 AM
5 yrs post op...pain is back!!

I had my hyst in Nov 0f 2000 at the age of 28. I had endo and adenomyosis. Up until the last year I've been doing very well. Now I'm having pelvic pain, swelling, shooting pains, and spotting. I did not keep my cervix, only my right ovary. Last year when I went for my yearly pap, my OB/GYN said she thought the endo may be back and suggested I have my remaining ovary removed. I wasn't ready for that. I had some major complications after my hyst. I found out I have a blood disease called von Willebrand's disease. My blood doesn't clot as fast as normal. I ended up having my incision open and packed for 2 1/2 months so it could heal from the inside out.

I'm going today to see my OB/GYN. I'm tired of the pain. I have 2 daughters (12 and 8 1/2) and hurting all the time makes it hard to do things with them that we all enjoy. I'm prepared to tell my doctor to take this ovary out! But I'm scared!!!!!! I just wondered if any of you have had the pain, bloating, shooting pains, or spotting after a hyst for endo. Thanks!!

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Unread 09-07-2005, 07:44 AM
oops wanted to add something....

I forgot to add that if I have my right ovary removed it will have to be taken out abdominally. I asked at last yrs dr. visit. She said she couldn't do it laproscopic or vaginally because of the scar tissue. I've already had 2 surgeries through my belly button and because of the problems I had with my hyst incision, she's afraid the scar tissue would be too much. Anyone had this done????
Unread 09-07-2005, 10:17 AM
5 yrs post op...pain is back!!

(((((Leolioness))))) I'm so sorry your pain is back

I have no experience with the issues you're dealing with, but I know that far too many Road Dwellers are dealing with Endo/Adeno and/or Adhesions. Hopefully they'll come along soon to share some insight.

In the meantime, here are some links to Endo/Adeno Resources and to Adhesion (scar tissue) Resources where you'll find links to resources specializing in these areas. Here's also a link to the No-Hormone Desert Oasis message board where you'll be most likely to find information on surgical menopause without the benefit of HRT.

Sending lots of s your way. Please, do keep us posted.
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Unread 09-07-2005, 04:52 PM
5 yrs post op...pain is back!!

Hey There,
I have been in your shoes concerning endo and an issue with my incision, I had my incision open after my hyst I mean all the way!! It took me 6 months to get it to close. It was unbearable, I know just how you felt then and now, I am not familiar with your Williebrands disease. But I am with the endo, I had a lapaoscopy(sp) last month to diagnose returning endo and ovarian remnant syndrome, thats why I have to have another surgery, this will be #8, this month. As far as pain goes, wow, I have had major pain. That is usually a sure sign that the endo or adhesions are back. I cant tell you what to do all I know is that I just can't live in pain like this anymore!! I wish you the best on what ever you decide. Let me know if I can be anymore help, You can always bend my ear.

Take care,

Unread 09-07-2005, 05:00 PM
5 yrs post op...pain is back!!

Hi Leo Lioness...

So sorry to hear you are in so much pain. I know it's not easy not being able to do the things you enjoy with your family because you are in pain. After my hyst in 2001 I was in a great deal of pain too. After about a year I had a diagnostic lap and my doctor could not even find my ovary. He ended up doing an abdominal incision and took both ovaries out and lysed the adhesions that were around my intestines. I had to have them lysed again in Jan. 2005 because they were around my intestines on the left side again. I know what you mean about not wanting to lose the ovary..I felt the same way. My doctor explained that having adhesions around the ovary or having it stuck to other organs is equivalent to a man's testicle being stuck to his leg...thus the pain. In the end I was glad he removed the ovaries. However, I understand you are alot younger and your ovaries are probably in much better shape than mine were as far has hormones go. It is a hard decision. The doctor who did my last adhesiolysis was able to do it laparascopically because he has a higher level of skill than the gyn who did my first lysis. He said it is much better to do the lap if you are an adhesion former and he did it without a problem. Maybe you could look into doctors who would be able to do it laparascopically? Just a thought.

Anyway, best wishes to you. I will hold you in my thoughts and prayers.

Unread 09-07-2005, 06:30 PM
5 yrs post op...pain is back!!

Hi Leolioness
I am so sorry you are hurting like this. I also had to have my hyster due to adeno. I had it May 2004. I had adhesions holding my bladder to my uterus and to the abdominal wall. I have had abdominal pain every since my TAH. Nothing showed up on cat scan a year ago, but this uro/gyn suspects adhesions. My ovaries didn't even show up on ultrasound in July. He said when he does my tvt and cystocele repair this coming monday he will do a lapro first. He said if my ovaries have adhesions on them he will remove them by lapro if possible, if not he will open me.
I had 4 c sections, then the TAH through that incision. I had a hematoma with the hyst and had a open incision for 2 1/2 months. I am also experiencing the shooting abdominal pains, pulling and belly swelling.
I just hope to get resolution to all of this and finally live that painfree life.
I hope everything turns out ok for you.
Unread 09-08-2005, 06:11 AM
Back from the doctor

I went to the dr yesterday and she did my yearly pap. While examining me she asked me if I had had a bowel movement recently. I told her yes...that morning. She said she felt a mass and at first thought it was my bowels but since I had just had a BM it shouldn't be so prominent. I go for an ultrasound on Wed. and after she gets the results of that she wants me to start Depo Provera. I'm really concerned about the mass and the Provera. I did 5 months of Lupron Depot before my hyst. and it made me a nut case! Hot flashes, night sweats, mood swings...the whole 9 yards. I have taken the Depo Provera before but as birth control after the birth of my first daughter. I remember having really bad mood swings with it. I'm not so sure that I want to take the shots. I don't know what would be left to try. She said she's almost positive that the endo is back and that the spotting I'm having is probably from endo on the vaginal cuff. She put some silver nitrate in the vaginal on some "sore spots" to see if that helped the bleeding any. I love my doctor and have the upmost respect for her but I think I'm just ready to get this ovary out and be done with it. The pain is too much anymore. I walk around looking 4 months pregnant all the time where usually I don't have a belly. Ok just thought I'd give a quick update and vent a little. Thanks!!
Unread 09-08-2005, 07:23 AM
5 yrs post op...pain is back!!

Hey There Again,
I want you to know that you are not alone, many of us have been there. I have done the lupron, it too made me feel like I was going nuts!
This is just my opinion, If you feel like you just want to get your ovary out, maybe you should consult your doc and share your feelings with her. I know I felt the same way before my hyst. JUST GET IT OUT!, this decision is not an easy one, I have been where you are. Remember you don't have to make a decision right away, see what your ultrasound says and talk more to your doc. Hang in there! I'll be thinking of you!

Unread 09-08-2005, 09:28 AM
5 yrs post op...pain is back!!

((((Leolioness)))) I'm sorry that the visit with your doctor brought more questions and worries. I do not have any insight for you but wanted to send s your way and to say that you're in my thoughts and ers, hoping that the mass isn't anything serious.

Unread 09-08-2005, 06:00 PM
5 yrs post op...pain is back!!

I am sorry to hear that your endo may be back. I have read that a hyst is 80% effective for removing adeno, in fact I don't recall seeing any posts here of it returning, but unfortunately have seen many posts of endo returning.

I'm sending s and ers that your doctor will find some answers and relief for you.

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