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Endo -second thoughts  TAH/BSO Endo -second thoughts TAH/BSO

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Unread 03-02-2002, 05:15 AM
Endo -second thoughts TAH/BSO

I am scheduled for a TAH/BSO on 3/4 and as the time is getting closer I am having second thoughts. I've had endo for about five years now, had a lap done in 1997, and it grew back. I have one daughter who is seven and I really wanted to have another child.

In 1999 I had a Laparotomy because I had 5.5 cm cysts on both overies and some of the symptoms of endo plus my dr. said that with the cysts i cannot get pregnant. After the surgery I tried to get pregnant. I tried everything unfortunately I did not get pregnant and by six months the endo symptoms came back again. This time I had really heavy periods and lots of cloting and I am always bloated. I had two nights of severe pain that won't go away with pain killers. I went back to my gyn and he said I have to have TAH/BSO. I am only 35 and I said no because I was not ready to accept this and wanted to have a second opinion. I went to see another gyn, did all the tests again and it was the same advice. I have to have a complete hyst. That's when I scheduled it for 3/4.

I spoke with my gyn since and told him my concern about wanting another child and he said he can try cleaning the endo only if i consider IVF. I am not sure if this is advisable since he said as long as I have my overies the endo will come back.

I only have two more days until my decision as my gyn is a very nice guy and he said I can make my decision on the day of the surgery and he will do what ever I want.

Thanks for all your quick responses......

HUGS to you all. This site has really helped me.
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Unread 03-02-2002, 05:29 AM
Endo -second thoughts TAH/BSO

Hi There!

This is just my opinion; I'm certainly no Doctor - I'm thinking that you really need to be comfortable with this decision. It sounds like you are looking at alternatives, and that is a very good thing - hysterectomy is irreversible and not always the only solution.

Normally I would suggest second and third DR opinions, but it sounds like your DR is open to alternatives and can advise you on such.

I feel like you should not be rushed; if you're having second thoughts, I'm glad you're taking notice of them!

This is not an easy decision for you - I sure do wish you the best and I think you will ultimately make the choice that is best for you and your health.

Unread 03-02-2002, 07:57 AM
Endo -second thoughts TAH/BSO

Wow, your post really struck me. Usually most of us here on the site make the decision for surgery after years of suffering and one year of reading posts here. That seems to be my own personal observation. However, there is no right amount of time. You need to take that time if you need it. When I have a difficult decision to make, I go to my Catholic church which is open all the time for quiet prayers. They even have a book you can write in. I went for 9-11, the Gulf War that my step-son was in, and for my hyster problems and other bad things. God always guided me to the right choices. Sometimes soul searching takes a while. Good luck! One day you will just know. Use whatever it takes: prays, talking to friends, and heart to hearts with your docs.
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Unread 03-02-2002, 01:01 PM
Endo -second thoughts TAH/BSO

I am writing to let you know that I to suffer with Endo. for the last 15 years. My first Child was concieved after a laperoscopy to clean everything up. I then underwent 3 months of Lupron injections to decrease some of the growth. 1 month after the lupron ended i became pregnant. I had to go through the same procedure with my other 2 children. That is another alternative you might concider. I have lived with the pain and agony of endo for 15 years and now that my family is complete I am looking forward to having my TAH/BSO the 2nd week of April. But if you are that unsure you really should not do something that you are not 100% sure of. I just found out yesterday about my surgery but I am ready for it.
The one thing I am having a problem with is that I went to the doctor thinking i would be able to keep my ovaries but was told that because of the Endo I would not. So that is a big adjustment at this time. I am only 31 years old and was not prepared for menopause right now.
But i can relate to the pain you are going through and please talk with your doctor about lupron it really did help me.
Big Hugs and good Luck
Unread 03-02-2002, 04:34 PM
Endo -second thoughts TAH/BSO

You definately have time to investigate other options. Remember,even if, in the end you decide on the hyst, you'll be more comfortable knowing that you considered and investigated all options available to you. The other ladies were right, and I think your instincts are right. Don't go through with it until you're sure this is right for you. Good Luck.

My surgery is 3-4 also. Unlike you, though, I have 2 kids,and I'm 43. You won't lose anything by waiting, though you may have that pain. But that is something you know and have been putting up with a long time. A little longer won't hurt.
Unread 03-02-2002, 05:02 PM
Endo -second thoughts TAH/BSO

Dear Arden,
You can always have the hyst later ... if you really want to try for another child and your gyn is willing to work with you, that's great. Don't have the hyst if you really aren't ready. As you know, this surgery is not reversible.

We'll be here for you, whatever you decide. Best of luck and please let us know what you decide and how you are doing after you get home. Sending hugs and prayers your way.

Unread 03-02-2002, 06:20 PM
Endo -second thoughts TAH/BSO

Your situation sound so much like mine. I will be 33 in March and have fought endo for so long I cant' even remember when I was first diagnosed. I had a lap in 94 and then got pregnant with my son who will be 7 in July. I was doing ok on the birth control pills until two years ago when we started trying to get preg. again. That is when all the pain started again and just kept getting worse. I tried Lupron and then also did some infertility stuff and still not pregnant. So, in January, I had another lap. It was not good, really bad endo, my tubes are in bad shape and my doctor refered me to a spec. He said that I should have my ends of my tubes tied off and try invitro or he could attempt a complete reconstruction of my tubes, etc. which would only give me about 5% chance of pregnancy, or, hysterectomy. Since the invitro really isnt an option for us financially, I thought about the reconstruction surgery, but he said it would be a really difficult surgery with long recovery. I am so tired of feeling terrible. Such bad cramps. So, I am in the same deciding process as you. I have an appt on Monday with my specialist and we will discuss things more. I wish you the best of luck, I truly understand your pain. Take Care!
Unread 03-02-2002, 07:48 PM

Hi Guys,

I really appreciated your responses. I forgot to mention that I was on lupron in 1997 for 7 months but I did not get pregnant. Also, when I had the Laparotomy in 1999, the dr. could not get all the endo out as it was too difficult. One of the things that made the gyn a bit worried for me is because my mom had a hyst. at age 27, (she had 6 children by then), and does not know what kind of growth it was. She was having pains, went to the gyn and he told her she had a big growth and have to have a hyst. (my mom used to live in another country where things like this often happen) Her sister, my aunt died of overian cancer at age 39 and so my gyn adviced me based on this and my past medical records.

I have decided to ask my gyn/oncologist to make the best medical judgement for me. He has mentioned to me that he will not be able to know for sure what needs to be done until he actually sees whats going on in there and do some tests. If it's really bad then he would do the hyst. If it could be cleaned then he will clean it out and put me on lupron immediately for a couple of months, then i can try to get pregnant. He did mention that eventually I will have to have a hyst.

Please let me know what you think. I already had (3) surgeries, a c-section for my daughter, a laparoscopy, and a Laparotomy - 6 inches incision on my tommy. My mom is begging me to have the hyst. because she cannot see me suffer any more because of another child and does not want me to go through another surgery.
Unread 03-03-2002, 05:05 AM
Endo -second thoughts TAH/BSO

Dear Arden and Stacey,
My heart goes out to you! Like each of you, I have just one very precious child ... my 20 yr old daughter. At age 30, I went through a diagnostic lap and other tests to try to determine the source of my "belly" pain. The gyn I went to at that time said I did not have endo and eventually my GP decided I had IBS. For the next 15 years I continued to have "belly" pain and increasing intestinal difficulties.
Fast forward to last year, when I was 45. I had been told a year prior that I had fibroids (had an ultrasound) but we were watching and waiting. In April 2001 I had sudden, severe belly pain and finally went to the ER after 3 days of this. End result was I started seeing a new gyn who told me my uterus was 14 to 16 week size due to the fibroids and I was a good candidate for a hyst. He thought the pain may have been due to the fibroids. After much research, I opted for a lap myomectomy which was done in June. During surgery my gyn found stage 4 endo ... I was in really bad shape. My gyn believes the endo had been there for MANY years ... probably was misdiagnosed way back when, probably was the source of the pain that landed me in the ER last April. I ended up having a TAH/BSO in late November last year and at 3 months post op, I feel so good it is like a miracle!
In some ways, I realize that maybe it is a good thing that I didn't know about the endo for all those years because who knows how many treatments I might have tried. Also, I desperately wanted another child but DH did not ... this was very hard on our marriage for awhile during my 30's ... we got through it though, and now I realize that it probably wasn't meant to be anyway. Once again, if we had really tried to conceive, it probably would not have happened anyway.
Ladies ... I sympathize with you and understand how heart-wrenching this decision is. I am so grateful to have my one beautiful child and now my renewed health. Even though I was past the point of considering another child, I truly grieved the prospect of finally "closing the book" on this aspect of my life. I reamined skeptical that a hyst would really solve all my intestinal problems even for several weeks post hyst. Now, I can say that my gyn was right ... I really did need this surgery and it has virtually eliminated all that pain. But before you decide to have the hyst, you need to come to terms with everything that this decision means. Renewed health ... very good prospects and that is wonderful. But the desire for another child is so strong for many of us ... you need to be ready to accept that there will be no more pregnancies after a hyst. Only you can make this decision. My thoughts are with you as you face this very difficult choice.

Unread 03-05-2002, 02:09 PM
Endo -second thoughts TAH/BSO

Well, I just got back from the specialist and he really confirmed that I NEED the hysterectomy. He said we could try invitro, but putting me on infertility drugs is like putting gasoline on a fire. He said that not one person he knows would question why I am having a hyst. I pretty much told me it needed to be done soon. So, I went to another OB/GYN oncologist who specializes in doing hyst for endo. They got me in right away and she agreed with the other doctor. So, this is three doctors that say you need the hyst. I was pretty ok with the choice. This dr. did a complete physical and to my horror, she found a lump in my breast. She sent me immediately to have a mammogram. My day was terrible running from dr. to dr. The mammogram showed nothing, but she swears she feels something. I might still have to have an ultrasound to rule anything out. Boy, after that scare, I didn't care if I had any female parts left in me at all. Really put things in perspective. I need to take care of myself. I wanted to wait till June for the surgery, but the dr. said no, we need to get you feeling better. I gained 10 lbs since my lap in January and have no skin left on my fingers from chewing, so, my castle date is set for March 21st. Day after my 33 birthday. What a present! If I feel better, it will be all worth it. I think half the battle is making the decision and I was lucky enough to have 3 great doctors help in that decision. Thanks for you post Beth, it really helped.

Best wishes!

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