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Survivor of 2nd Surgery and many questions. Survivor of 2nd Surgery and many questions.

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Unread 11-26-2003, 08:16 PM
Survivor of 2nd Surgery and many questions.

Hello Ladies! I had my 2nd surgery a week ago Tuesday. It was to remove my ovaries and to remove the adhesions and scar tissues. And after all the confusing surgery and pathology reports along with the 1st doctors offices confusion on how many ovaries, the issue of how many ovaries I had was to be cleared up. Well, there were two ovaries in there after all. The Dr. said he had to look hard to find the right ovary. He said that on behalf of my first dr.'s defense, that she probably did take out the right ovary and it grew back. He called it Ovarian Remnant Syndrome. I said yes, I understand but how can the right ovary grow back when the pathology report said it was the left ovary and even the 1st dr. either said she left both ovaries or changed her story and said she took the left ovary. He didn't have an answer. He just sticks to his right ovary theory. Anyway, the 2nd dr. said that I had endeometriosis and I needed to take a shot for 6 months to make sure I didn't have surgery the next year. Well, I'm scared silly after reading all the side effects of this shot. Forgive me, but I forgot the name of it. I think that it is Lupron or something like that. I have it written in the other room and I'm to lazy or tired to go get it. I asked to be able to research this out until my appointment next Monday and he did not like that. My husband and I got intimidated and said we would take it before I checked out. But after reading the side effects and my bad luck with medicenes, we decided to wait. The nurses checking me out called the dr. and told him my decision and he had some of the nurses try to talk me into taking the shot. However, one nurse said I was doing the right thing in researching it and I haven't taken the shot yet. I do have a question. If both my surgery report and my pathology report from the first surgery said there was no endeometriosis when I had my first surgery and they took out my uterus. How can I have it so bad now? And it seems a lot of hormonal stuff even natural stuff would interact negatively with the shot they want me to take. I asked for my pathology and surgery report from the 2nd surgery and they said if I'm getting another dr.s opinon, he can have it now. However, I have to wait 30 days before I can request a copy for myself. Bummer. When I came back to my room last week, I asked my Dh if I had a cathether. He said he didn't see one. A few hours later, I was uncomfortable and still in a lot of pain and couldn't see down there so I asked a nurse that came in. She lifted up the blanket and there was my bag and hose all kinked up and under my leg. Boy did I feel better when they hung it all up right. They kept getting in late to give me my medicenes and they weren't working and they were arguing with me and I just started crying and said I was going to talk to no one until my husband came up. I was so upset I said I was checking out. They were changing shifts and the nurse was about to cry herself and got me the information she promised at the beginning of her shift about endeometriosis. It didn't help. I called my dh and it took him about an hour to get there. They sure were being nice and offering all kinds of help but I said I wasn't doing anything until I had a witness and I cried and cried. I was having allergic reactions to the tape we think it was now. My sinuses were messed up and they were wanting to give me Benadry. Except last year when my sinuses were messed up and I took Benadry, I ended up in the emergency room and was on pain pills for 4 days with a heating pad. The Dr. told my husband to not ever let me take Benadryl when my sinuses were that way and I was scared to take it and they were trying to give it to me and arguing that what the other Dr. said couldn't be so. They also were arguing with me that the pain medicene they were giving me was working and it wasn't. Also it took me two hours just to get them in there to give it to me. The next morning I had a temp of 100.3 and that was the last they checked on me until my Dr. came to check me out. He was surprised I had the fever and almost argued with me on that until he checked the records. They didn't tell him that I had one or that I didn't want the Benadryl. He told me he had another patient that actually got in the car and drove off to go to another hospital but was so sick she had to come back. He said I wasn't the only one that wanted to check out. I was sent home confused, with no antibiotics but no fever by the time they finally checked it and greatly disappointed that I was just as confused after the surgery as I was before. The Dr. that spent a lot of time before surgery, suddenly didn't have time. It was rather awful and I pray I never have to have surgery again. My nurse after my husband got there said that there were to many pain meds out there that if a patient said one didn't work that they couldn't try another one and while I had her that night I did get some relief. The night before that night, I spent 8 hours in pain trying to convince them it wasn't working. So, all of this is probably blotchy and I hope I made sense. It's the first time I've felt well enough to sit and type. It sure is good to be back and operating somewhat in the land of the living Hystersisters! Any advice about where to go and do research or stories would be helpful. Perhaps someday I will be well and can return the favor to other sisters. Thanks a lot for all your support and this website. It's great.
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Unread 11-28-2003, 08:33 AM
Survivor of 2nd Surgery and many questions.

Dear Cathleen RC...First let me send you some soothing S It sounds like you had a hard time in the Hospital...I had something similar happen to me (regarding the meds) and I know how difficult it was.

I took Lupron before I had the Hyst., This was following a lap, when the Dr's confirmed that I had Endo. I didn't want to take the shot, but had hopes that it would help. I had a very hard time with that med, and would never take it again...although I have heard that it has helped many women.

My question to you though - and perhaps you could ask your doc as well...Is why do you need to go on Lupron if you do not have your ovaries? Lupron puts you into a Pseudo Menopause...and if you no longer have your ovaries then you are in it now. Are you taking any HRT? If you have a problem with Endo, I would suggest that perhaps you should either introduce some progesterone with your estrogen, or simply not take it for a few months, and the Endo 'should' die off on its own. I say should, because Endo is a tricky disease.

You had your uterus out during your first surgery right? Because your ovary (s) were left in, Endo can still survive because of the estrogen that your ovaries produce.

I have heard of ORS right here on the road. My docs suspect that this is one of my problems...As I still have problems with Pain / Endo.

Doing your research is very important...and you could start on this site. Just click on the search button and put in your key word(s). There are many posts discussing Lupron, as well as Ovarian Remnant Syndrom (ORS). You can also find out a lot of information by using a search engine. If you need any help, please let me know.

I will keep you in my prayers my dear...And remember to listen to your body and rest, rest, rest! Your sisters are here for you I'm sorry if I didn't answer many of your questions...But I'm sure others will be by shortly to share their experiences.

Unread 11-28-2003, 09:16 AM
Survivor of 2nd Surgery and many questions.

Dear Jude,
Thank-you soo much for your reply to my post. It helped me a lot and I will continue to do my research. I have a Dr.'s appointment in 3 days and I want to come with questions and research to back it up. I myself am wondering why I would need Lupron if I don't have any ovaries. All the side affects listed really scare me as I seem to always fall into that small percentage listed of experiencing side effects on the medicene. We were so shocked that I had endo as the first reports say there was no evidence of it when they removed my uterus. We were also shocked to hear him say that my former dr. probably did removed the right ovary and it grew back as the ovary in question before the surgery was the left ovary and not the right ovary. I asked him about it but he never did give a good answer and like I said before stuck to the right ovary theory. So as I think I am repeating myself, I'll go for now and do some research this weekend. I'm afraid I overdid it by going to Thanksgiving dinner yesterday and I'm soo tired today. Because I'm so tired it really was encouraging to read your e-mail. Thank-you a lot.
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Unread 11-28-2003, 10:23 AM
Survivor of 2nd Surgery and many questions.

Dear Cathy,

If there is anything I can do to help you please let me know. I did/continue to do a lot of research regarding my current health problems etc.

I'm sorry to hear that you over - did and can understand how easy it would be to do that over the holidays. Please do get lots of rest. You've just had another major surgery, and your body needs to heal. Think of yourself as a Princess with 2 crowns

Please let us know how you make out at your Dr's appointment...and remember that if you are not comfortable taking Lupron that it is your decision. I know that it is easy to get intimidated by some dr's...but you need to do what feels right for you. Your doc will probably say that Lupron will shrink any remaining Endo...But I can't imagine going on that without ovaries...One of my Dr's suggested this to me a while back, and I refused to go through that again

Take Care...S
Unread 11-28-2003, 11:25 AM
Survivor of 2nd Surgery and many questions.

You've been thru quite an ordeal..I'm sorry for the pain & possible surgery
Unfortunately as far as Endo returning, yes it can Many Surgeons have been taught to treat Endo by removing the Uterus & Cervix when the fact is that Endometriosis implants are uncommon to be found on the outside of the Uterus or on the Cervix. They are commonly found in the cul-de-sac, pelvic sidewalls ect...many Drs. do not remove those implants, they are sometimes left behind *eek* Their thoughts in doing this is by withholding HRT any remaining Endo will die off due to the fact that it feeds on Estrogen. Researchers are now saying Endo might possible create its own Estrogen supply<sigh>
Endo can be difficult to treat surgically after undergoing a Hyst. Implants can get sewn up in the cuff area where the cervix was, hid underneath Adhesions, even sewn up in the incisions.

Here is some excellent site links containing some very detailed info on recurring Endo Post-Hyst, symptoms, available treatments options along w/ some helpful tips to discuss with your Dr when you see him next:

Endometriosis; Recurrence Rates:

Perhaps the strongest reason for beginning with surgical treatment is the apparently lower recurrence rate compared with medical treatment. Early studies of conservative surgical therapy showed a laparoscopically defined cumulative five-year recurrence rate of about 19 percent. The long-term benefit of surgical intervention for pain is enhanced by definitive surgery, including bilateral oophorectomy, with a 10 percent cumulative recurrence after 10 years.
This rate is considerably lower than those following medical therapy. In one study of recurrence after medical treatment, cumulative five-year rates of recurrence were 53.4 percent. Unfortunately, patients whose presenting complaint was pain and those seeking treatment for infertility were grouped together in the analysis. Other studies show similar recurrence rates, regardless of the medical therapy used. At least one study noted higher recurrence rates in patients with more advanced stages of disease.
Recurrent Endometriosis After Hysterectomy:

There is no question that endometriosis can be present in a woman who has undergone a hysterectomy and removal of both ovaries (even more likely if the ovaries remain). Performing a hysterectomy does not in itself treat endometriosis. It may reduce the chance of future recurrence of endometriosis, reduce non-endometriosis related cramps, bleeding etc. The key point is that endometriosis, for the most part, does not grow on the uterus, it grows behind the uterus, on the bowel, in the rectovaginal septum, in the pararectal spaces, under the ovaries, around the ureters, on the bladder, etc. If a hysterectomy is part of the agreed upon treatment plan between you and your physician that is fine, but ONLY AFTER the endometriosis has been completely removed from all of the areas which will not be taken out with the uterus. If you have undergone a hysterectomy alone for the treatment of endometriosis (the endometriosis was not treated just prior to the hysterectomy) there is a good chance you will have persistent or recurrent symptoms. Say your gynecologist surgeon is standing there ready to go after the endometriosis... What are the pitfalls?

Often the time a patient has gotten to this point she has undergone so many surgical procedures that is impossible to tell what is and what is not endometriosis. The anatomy is distorted, fairly extensive scar tissue and fibrosis (tough leathery tissue) is present, and often endometriosis is buried out of sight in a patient who has had a hysterectomy performed. The endometriosis gets buried when the surgeon clamps, cuts and ties the tissue during the hysterectomy. The endometriosis that is present get wadded up and buried in this process. After this area heals following the surgery it can be impossible to see endometriosis without dissecting the areas in which endometriosis is known to grow. Another common area for residual endometriosis is the vaginal cuff. Unless all of the endometriosis is removed from the rectovaginal septum prior to the hysterectomy, it can be easily sewn into the vaginal cuff.
Understanding Endometriosis & add back therapy; What Should I Expect From Lupron Depot

Lupron Home page

LUNA & PSN for Endometriosis Pain

Pain-mapping (Patient-Assisted Laparoscopy)

How get your Doctor to Listen;
Find and work with a doctor to successfully treat your disease...

This link is to our HS Resources forum...there are many links & articels there w/ info on this as well:

Endo-Adeno Resources

HRT and special situations:

Endometriosis and post-hyst HRT

Women who can't take hormones

I hope this is of some help to you in getting a better understanding of all this! They say Knowledge is Power...many of us Long-term Road Travelers have found that to hold so very true. Being aware of all your options for treatments, the disease & symptoms it may carry, empowers you to make a better informed decision in knowing the possible risks & outcomes of each. Good Luck w/ everything..pls let s know how your Drs. appt goes

~Sheri Lynn~
Unread 11-28-2003, 12:39 PM
Survivor of 2nd Surgery and many questions.

Wow ladies, thanks for all the information. I decided that tomorrow when my dh is with me, to research all the information together. He is quite worried about me today as I overdid it. I guess I was recovering so much faster on this surgery that I just forgot that I was still healing. My dh took the ds's out and my dd is with her cousin. I'm feeling quite today. I think that a part of me wants to go into denial and . I just wasn't expecting them to find anything else after this surgery. My stepmom said it wasn't fair for the dr. to not like us requesting tiime to research our options as I had just come out of surgery. Someone told me that endo can lead to cancer and I'm just worried. However, other than an occasional trip to the computer today, I'm burying myself in the covers and resting. I even have the rule of the remote control of the T.V. today along with some m&m's my dh brought me. I shall make them last a loonnnnng time. Things will probably seem better tomorrow after I rest. I'm just so bummed about all this.. Once again thank-you for your information and I look forward to researching it tomorrow. Also thank-you for the wonderful support.
Unread 11-30-2003, 07:55 AM
Survivor of 2nd Surgery and many questions.

Hi ((((((Cathleen))))))))),
I'm so sorry to hear all about what you have been through. What Sheri found on that quote was very interesting. I also have to have surgery again next week. I had an LAVH, kept ovaries, but no cervix Dec. of last year. I continue to have monthly to biweekly bleeding. EVEN though I have NO uterus. I finally found a new doctor and she found endometrial cysts growing through the vaginal cuff. She also told me that if she finds endo she wants to put me on the Lupron. I did a bunch of research on that Lupron and have decided that I personally do not like all those side effects and I don't want to go on it. There are other ladies that decided not to take the Lupron on here and have tried other things including the continuous birth control pills etc. I plan to discuss other things with my doc instead of the Lupron. I think it's your body and you make the decision. Your doctor should go through all the side effects with you and decide if that's what you should do or if there are other things maybe to try instead. I think you made the right decision by doing your research first.
Unread 11-30-2003, 12:14 PM
Survivor of 2nd Surgery and many questions.

Hi Everyone!

After much research on Lupron, I have become firmer than ever that I believe that Lupron would not be right for me. I have had to many experiences with adverse and allergic reactions with other drugs to even want to try this treatment after reading the side effects. I also have several questions to ask my dr. before I know exactly what to research. I suppose my first one will be what makes him so sure the right ovary grew back when no one knew for sure that it had been taken out. The main ovary in question was the left ovary as the first dr. couldn't remember whether she took it out or whether she left both in. And now all of a sudden there is the 2nd dr. saying my right ovary grew back and it could grow back again. Boy, I sure am thinking about getting a 3rd opinion and can't wait to see the surgery and pathology reports from this 2nd surgery. I would just like to have all the confusion cleared up and definately feel confident about my diagnosis before I do anything else, especiallly the Lupron. Jamie, I will be thinking of you on your next surgery. Let us know how it goes. Thank-you for your supportive post. Tomorrow is my dr. visit and I will let everyone knows how it goes.
Unread 12-01-2003, 08:53 AM
Survivor of 2nd Surgery and many questions.


I just wanted to pop in to wish you all the best with your appointment! Please let us know how everything goes....I won't be around for the next couple of days (dealing with some family troubles) but I will look for your post when I return.

It sounds like you have made some good decisions regarding your treatment options, and waiting to get some questions answered. I cannot understand how the dr's are unable to keep track of your ovaries Please let us know what you find out when you get your surgery reports.

I too seem to react to many medications...and fall into the small percentage that experiences adverse reactions - no fun eh?! So I can appreciate how you are feeling. For me personally, Lupron was a horrible experience. If you ever want to chat about that, feel free to e-mail me.

Sending you many S

P.S. ((((((Jamie)))))) I want to with you all the best with your surgery. I will keep you in my prayers...
Unread 12-01-2003, 02:25 PM
Survivor of 2nd Surgery and many questions.

I wanted to thank you and Judester for the kind thoughts and prayers. I went to my pre-op appointment today. My surgery will be Dec. 10. I will try to let everyone know how things go as soon as I am able.

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