new here - why no threads about alternatives???

Hi not convinced

Welcome to Hystersisters. I'm sorry to read of all you have been through and are facing now. I would be the first one to encourage you to follow your gut here. Our desire isn't to promote hysterectomy, but to provide woman to woman support for the issues that each woman faces. I appreciate your stand and understand why you feel as you do. I agree that many women trust their drs, never questioning anything. Some don't have the ablity and others just never think to do it. This issue with the endo is a very unique and complicated one. I think you are wise to question and look at all of your alternatives. We see so many who have drs who are just not educated or don't care. I'm sorry you seem to be have been the victim of one.

I'm one who absolutely did not want to have a hyst under any condition. I tried everything - D&C, ablation, hormone treatments and nothing took care of my problems. I had all my children with no drugs and even had one of them at home. I have always been one to seek the least invasive way when it comes to medical help. I do sympathize with your desire not to have this. If I had felt there was any other choice I would certainly have taken it. By the time I had my surgery my body was worn out with anemia and procedures that had worn me down, but not cured me. Many women have similar stories here. We just want to help each person do what is best for them.

These ladies who have replied to you have been through some of the same things you have and seem to have some understanding of how you feel. That is who we are, women sharing and trying help and encourage with our own experiences. I hope you will find the support and encouragement you need to make wise decisions for you health and future. You have a strong desire, which is evident and are wisely asking and looking for help in deciding what to do next. Keep at it until you find what is right for you. We're here to help anyway we can.
's,Rita

Oh My Goodness, why would I want to have a hysterectomy? Hot flashes, moodiness, no libido, premature aging....the hormone jungle! I had no choice due to multiple fibroids and a history of ovarian cancer in my family.....I am extremely grateful for Hystersisters who have helped me with information and support. I quickly realized after my surgery that most of my friends and family couldnt help me as they had never been through this themselves.

I had a hyst for endo and I feel GREAT!!!!!!!!!! Maybe not for everyone and I do feel for those who had the surgery and are still having problems. I didn't feel as if I was a lamb rolling into the op room. I felt like a woman who had 3 children and who should not continue going through pain and disgusting periods any longer. I feel as if I have been giving new life lots of energy, no more pain and no more money spent on tampons!!! I do not have to take any hormone pills because I kept an ovary. I know later this could cause me problems and when and if it does then I will have it removed as well just hoping to get a few more years (only 31) before I have to do that. I do have a friend that is totally against a hyst. and even bought me a book before my surgery. I read the book because I respected her views and wanted to know more on why she was so against it. Although as you know that did not discourage or change my decission. Everyone has to do what they feel is right for them. I have read about alot of women who have problems if they have to go on hormones. I am very thankful that I got to keep an ovary and if I would not of been able to my decision might have been different.

Hi notconvinced
I understand how you feel but have you read the aching hearts forum, there are many women there who aren't pro hyst. but most have needed to have it done to save their lives or for quality of life.

I know what you mean though, I had a hyst due to "possible cancer" I had an enlarged ovary, I had been bleeding heavily for 10 days. I was sent to an onc/gyn and he recommended a hyst. in case of ovarian cancer because of the panicked state I was in a hyst seemed unimportant in the face of cancer (especially ovarian cancer), so I didn't give it much thought, I was so focussed on the fact that I had cancer and might die. So within 10 days I was terrified I had cancer and recovery from surgery. Fortunately it turned out to be a solid cyst.

I was devastated, I couldn't stop crying, I couldn't function or go to work for weeks, I felt like a nothing and went into a deep depression. I should have been ecstatic that it wasn't cancer but the flip side was I felt I had this surgery for nothing and that I was no longer a woman. However I don't blame the onc. he is a very conservative surgeon and has a reputation for not being "gung **" and as I no longer wanted anymore children he probably felt that if he just removed the ovary and it turned out to be cancer then it would mean another operation plus my iron levels were extremely low and I was so scared and anxious.

I did blame myself though, I kept going over and over what I should have said and done, if only I hadn't been so scared and irrational, if only I had said leave the uterus if everything looks ok but I can't go back now and that's where hystersisters have been such a great help and that's what this site is for "support and encouragement" it would be no good now having alternatives flung in my face as there is nothing I can do to change it, AS MUCH AS I WOULD LOVE TO.

I do understand how you feel and it's a good thing that you are in position to think about how you feel about this surgery without it being thrown at you with no time to think. I wish you well in whatever decision you make and if you feel very anti then DON'T get it done.

Dear not convinced,

I can see why you are so reticent to have a hysterectomy -- you've already been subjected to a probably unnecessary surgery that may have caused a good deal of the problems you are having now (adhesions).

I get spitting mad when I think about how pregnant women are routinely induced and then when the chemical contractions are too strong for baby (and mom!) it's off to surgery. It certainly does speed up the amount of time that you'll be lazing around in a labor room, causing your poor obstetrician to have to be on call. Once the surgery is done, Dr. She or He can move on to the golf course or the mall, where they belong.

Whoops, there's my angry side coming out!

Seriously, though, I couldn't agree more that putting yourself in the care of the medical profession is truly scary. For me, it was the worst part of the whole thing -- stepping into the lion's den. I've been told I must learn to trust doctors, and I don't know if I'll ever go that far, but I have at least come to terms with the ones I have now.

I learned that Dr. World-Famous (a gynecologic oncologist) had messed up my surgery in a consultation with a radiation oncologist. I told Dr. rad/onc that I didn't know if I wanted radiation (and in the end I didn't get it) so he had to convince me. He told me that dr. w-f had left all kinds of things undone, so we didn't know if I still had any cancer in there. Even though I didn't want radiation, I did like this dr. and his honesty, so a few days later I called him to ask for a referral to a new gyn/onc. I liked the new gyn/onc, too, and he recommended further surgery instead of radiation (to finish the job). I'm a poor candidate for radiation, you see, because of the infamous ADHESIONS. Seems that adhesions are one of the side effects of radiation, and since I suffer from pelvic adhesive disease or whatever you want to call it, it could have been a very bad move for me.

The new gyn/onc argued with the old gyn/onc and the rad/onc about his assessment, but he was insistent with them and I was insistent that this is what I wanted. I did get a third opinion from a general oncologist so that I could feel I wasn't making a rash decision.

As I already mentioned, this new doc then did a six hour surgery (with a general surgeon who is a lap expert and a urological oncologist to stent my three ureters, another whole long story). I think they probably spent nearly four hours on the adhesions, there was the previously not done stuff (one ovary glued to the abdominal wall, a mess of lymph nodes), and finally (and here's your hysterectomy horror story) they discovered that the previous surgery had left me with a hole in my vagina, which was repaired.

Omigod, what a long story to say that I think you can find a new dr or even a new team of drs that will know that other doctors can make mistakes (no matter how famous they are) and will take the time to carefully repair them. I'm sure you can find such a person.

BTW, please be careful about asking in a intestinal expert. What I mean is that some women come out of endo/adhesion surgery with parts of their intestines cut out and I know from the experience of being a sister IBS or whatever person that those of us with hinky intestines have a very difficult (or impossible?) time healing from the loss of pieces of intestine.

The irony of my story is that my new gyn/onc is in the same practice as the old gyn/onc! I was very hesistant about this, but, in the end, it didn't turn out that he was afraid to go against the guy. However, I think that asking him to testify for me would probably be pushing it too far.

Why oh why does the "top man in his field," "doctor's doctor," "world famous surgeon" mess up? I think arrogance (I know what this is and you don't), the possibility of a tired or embittered or bored or even drug or alcohol dependent doctor resting on their laurels, or just plain greed (time is money).


OK, now I want to shift gears. I'm worried about you on all those pain killers, esp while you are nursing. Did the same ole doctor tell you that these meds won't hurt the baby? Well, you are clearly intelligent and inquiring, so look up your medication in the PDR (physician's desk reference) and see what the side effects really are. I'm all for you continuing to nurse (they are only babies once), so please don't think I'm encouraging you to wean. Rather, I'm saying that, however impossibly difficult it is, you've got to move on with treatment so that you don't need the painkillers during lactation.

Also, this is clearly not the time for a hyst. What would that do to breastfeeding? I agree with your priorities. I hope you'll never need a hyst, but maybe you will down the line, hopefully not till you are old like me (51) and having all the symptoms of menopause, anyway. At this point of my life, hysterectomy is not at the top of my list of worries.

This is so long winded -- what I really want to say, in a nutshell, in this:

1. You can find a new doctor who will be a better help and you have to because of the baby, if not for yourself

2. I'm so sorry you have had to go through all this, and it's not over.

3. If the day ever comes when you do have to have a hysterectomy, I hope you can let go of past issues and do what needs to be done to save yourself.

Hi not convinced

to Hystersisters

	Quote:
I'm new and haven't read a whole lot here. Just wondering why all the gung-** pro-hyst posting, and no threads about alternatives. This is the "hysterectomy options and alternatives" forum, is it not? So where are the alternatives being discussed?

I am sorry you feel as if there are not any discussions about alternative treatments for a hysterectomy. It can be very confussing for new members to navigate their way around the different forums and message boards and resource database. Hystersisters is loaded with valuable information providing options and alternatives for a hysterectomy.

We try to support all members depending on their specific needs. Here are some links that may be very helpful in finding treatment options for endo. These links are at the top of the options/alternative forum.

Alternatives/options resources

New books for options/alternatives to hysterectomies

If you look to the left and top of the options forum, there are many different links to click on specifically designed for women looking for alternatives.

They have various titles such as "avoid a hysterectomy"....."exploring your options" ( includes details about other approaches to treatment,).... "New non-invasive treatment for uterine fibroids "..... "Find out treatment options, support and answers from local physicians."

Resource database

Endometriosis resources

Progesterone to treat endo

Mirena coil for endo

Medications to treat endo

Endometriosis treatment program

Diagnosis and treatment of endo

I am so sorry you are dealing with endo. I had my hysterectomy for endo, so I understand how painful it can be. Unfortunately with endo, there are not many options to "cure" the endo. All we can do is hopefully find the best procedure that will provide long term pain relief.

For me I was fortunate that my hysterectomy successfully got rid of my endo pain. Unfortunately not all women have the same outcome. My endo was severe by the time it was discovered and after a laproscopy it was discovered that my bladder was almost destroyed by my endo. I had 2 choices. A hysterectomy or a catheter for the rest of my life. I choose the hysterectomy.

We all have to make the best choice for our circumstances. I do encourage you to seek out other alternatives to get your endo under control so it will not continue to cause damage to your other organs. We also like to suggest getting a second and third opinion bacause different doctors have different approaches to treating women with endo.

Best of Luck

Yup, I second troubled tabby's post. This site in a mine of invaluable information for alternatives ... also, have you tried the 'search' facility? Once you find your way around, I think you'll find yourself swamped with information!

hi notsoconvinced,

I've been looking on this forum for a while, and consider it the best out there for hyst and alternatives. I myself am going to get an ablation and bladder sling (when the insurance company lets me). Ablation seems like the right alternative for me (I have fibroids), but it is not for everyone. There have been long debates on the pro's and con's on this board.

About the adhesions surgery for endo - I'm no expert on this, but I think i've read somewhere on here that some women who had hyst for endo with adhesions in their intestines also had a surgeon present who specializes in the intestines/colon to do that part. A gynecological surgeon really only specializes in the reproductive organs, and I think that a responsible one wouldn't touch an area that he/she has no expertise in -that's a good thing! My ob/gyn plans to do the ablation and the urologist will do my bladder sling (at the same time, while I am under general anesthesia) - I am very pleased that my ob/gyn doesn't consider herself to be a "one-man-band" when it comes to surgery and is letting the urologist do the part that a urologist spends years of training learning to do. I wonder if you can have a consult with a colo-rectal surgeon also to find out how they would handle intestinal adhesions???

thank you all so very very very very much!!! I have a lot to think about. I really need to talk with my doctor(s) at more length. Mr famous surgeon doesn't seem to have the time to talk and listen to me like he did the first time I saw him, so I'll start with my regular ob/gyn and go from there.

	Quote:
Originally Posted by geniemiami OK, now I want to shift gears. I'm worried about you on all those pain killers, esp while you are nursing. Did the same ole doctor tell you that these meds won't hurt the baby? Well, you are clearly intelligent and inquiring, so look up your medication in the PDR (physician's desk reference) and see what the side effects really are. I'm all for you continuing to nurse (they are only babies once), so please don't think I'm encouraging you to wean. Rather, I'm saying that, however impossibly difficult it is, you've got to move on with treatment so that you don't need the painkillers during lactation.

I'm not on pain killers constantly, I do take something (usually otc motrin) just about every single day, but usually only at night as the pain gets worse throughout the day (yet another reason I suspect adhesions are the culprit). my nursling sleeps through the night most nights, and is not a newborn any more so doesn't get the majority of her nutrients from the breastmilk in the first place. I have a prescription for tylenol3 that I take when otc stuff doesn't work. One refill (30 tablets) usually lasts me two months. So it's not like I'm taking it every four hours all day every day like I was after my cesarean or anything close to what I was taking (hydrocodone) after my most recent lap surgery. Anyway, my point is that I know it is safe even if I were to take way more of it than I do, and my baby is not exposed to much of it at all.

Hi not convinced,

I too am an endo survivor too.

I know what you mean about unnecessary testing, surgeries, etc.

I had a bad experience with my first lap. (I almost died) It took me many years to have another lap. During that time I went to many doctors that kept me on some kind of hormonal therapy and pain killers. I remember basically begging a doctor to do a lap that's when I realized I needed another doctor.When I did find a qualified surgeon he did 3 laps to help releave me of my pain. Every time he did another lap there was more endo even on depo provera. Very uncommon. I stopped seeing him because I moved north.

During the past few years I've seen 3 gyn's. 1 wanted me to take lupron, 1 wanted to keep me on bcp and pain killers with out even doing an exam when I have seen her for years. My angel doctor has been the 3rd. He did an exam, read my medical history, and surgical reports. He actually asked me why haven't any doctors here helped you?

Then he gave me some options and let me decide what is best for me.

I've been on painkillers now for a while.

I would suggest finding a doctor who will listen to you and help you.

Don't feel pressured to have a hysterectomy. It is your decision.

Sharon