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  #1  
Unread 06-19-2005, 11:07 AM
possible hyst in Aug 05

Hi Everyone,
I'm 32 years old and have two children (7 and 10). I've had problems since I was in grade 8 with my menstrual cycle. The first day would always have me home curled up with my hot water bottle and a bottle of tylenol.

When I was 20, I awoke one night with pains to my lower right abdomen and vomiting. The next day I went to the dr who promptly admitted me into the hospital. He suspected appendicitis. After an ultrasound it was revealed that I had a mass on my right ovary. During surgery it was discovered it was a chocolate cyst the size of a grapefruit and a diagnosis of endometriosis.

The following year I had a lap down to see how extensive the endo was. It was found my right side was scarred up and I had a 50% chance of conceiving.

Well my good side must have been firing out the eggs like nobody's business because I have two children! After my two children (who were both premies), my pain subsided slightly during my period, but I would get menstrual like cramps throughout the month so much so I would need my trusty hot water bottle and bottle of pain med. The length of my cycle wasn't reduced nor did the amount of bleeding after having kids. The size of my clots increased as well. I would say I gave birth daily during my period.

Then last year (2004), I started spotting. After a lengthy process I discovered I had a polyp in my uterus and adenomyosis. I've been on the pill and it's controlled the bleeding somewhat where I'm not spotting all over the map. But I still have pain throughout the month.

I've had it and have asked my dr. for a hysterectomy. He's very reluctant given my age. I've assurred him that I do not want anymore kids. With me being 32 and the fact that my uterus didn't do its job well when I had my kids, I feel the risks would be to great to even think of having another child.

He's suggested an IUD (too expensive and will it work?) but I can't help but think that what will happen 10 years from now? What if they find something else and I have to have surgery? Why not do it now when I am only 32 and better able to handle it? I've been doing some reading and there's this drug and that drug and this procedure and that procedure but there's no guarantees that these will work. Do I want to be on a myriad of different drugs throughout my life? Not really. Do I want to go for procedure after procedure only to find that it's not working?

Then I always wonder if I'm making a right choice. Yes, I've had issues since I was in grade 8, but I just don't seem as bad off as some other women's stories. I guess I'm the type to think that if unless I'm really ill then it's unnecessary. I've dealt with it so far what's another 10 years. Plus I've read some of the side affects such as incontinence, decreased libido, ovarian failure...I just don't want to cause other problems. How often do these things occur?

Anyway, this quite the lengthy hello but I just need to get it all out there and see what everyone thinks.
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  #2  
Unread 06-19-2005, 11:59 AM
possible hyst in Aug 05

I completely understand your predicament. I am 39 and have 2 older kids so I'm so done with that part of my life. My ultrasound came back normal but I have very painful periods (no heavy bleeding, though) and I'm just tired of it. Tired of suffering and tired of feeling like I'm back in high school. The doctor didn't say that I have endo but I think that I do. I have pain during bowel movements(during period) and back pain and sharp pains as well. I like you am worried about the affects of the hyst, what will it do to me and how it will affect my sex life? I just think that we need to listen to what our bodies are telling us. What are the alternatives? I told my doctor that I want my uturus out and please check for endo so she said she would do the hyst vaginally and do a scope for endo. I really don't know too much of what it means except for what I have read on this site. I'm just ready to be done with it. I have tried BCP's and can't tolerate them any more (blood pressure) and spotting every day on those. I have always been afraid of IUD's because I have heard that for women who have painful periods it makes it even worse. Have you thought of an ablation? My doctor wanted to try that first but she said that there is no guarantee because it is mostly for women with heavy periods, which I don't have. Good luck with your decision and keep me posted.
  #3  
Unread 06-19-2005, 04:25 PM
possible hyst in Aug 05

Thanks for responding Daisy01. I was wondering, do you have good days where there is little or no pain and then bad days where you can function but not really concentrate because you're uncomfortable? Because that's me. Right now I'm having a good day with no pain. So I'm really wondering if I should do this. Like I said, my story doesn't sound half as bad as some of the ones I've read.

I'm like you too when I get my periods...painful bowel movements and I have one or two day of heavy bleeding and lots of huge clots. I feel nauseous when I'm having the pain. Once the pain goes away enough for me to feel comfortable I feel exhausted.

Yeah, I'v thought of an abalation but I've also read stories from a number of women that say this works for a few months and then their periods come back stronger than ever. I'm unsure if this would work with adenomyosis (this is like endometriosis but instead of being outside the uterine wall it's inside).

So are you going for a hysterectomy? If so when? I see my doctor tomorrow (June 20th). I have a while slew of questions for him.

I don't know. Like I said, I read about all this stuff like "First I went for an abalation, then that didn't work so I went on this medication, then I tried this medication. Then I went for this procedure but that didn't work." I just don't know if I want to go through all of that!

Then like you I thought I've had it! What's going to happen 10 years from now? Just take it out! Then I've been reading all of this stuff that could happen AFTER the surgery and I'm like, "Oh man!" This is just crazy!

My aunt had a vaginal hysterectomy where they removed her uterus and cervix. She (like all my aunts and my mom) had heavy painful periods when she was younger which seemed to have abatted after she had children. But then she began to have heavy periods again and pain. She found out she had fibroids. She said the hysterectomy was a blessing. She did feel a bit blue after because she lost her uterus but she said that lasted only a bit.

My mother in law had a complete hysterectomy a number of years ago. She had polyps that were removed several times and then finally she had a huge fibroid. She said it was the best thing that could've happened to her. She said she does have problems with incontinence but wasn't sure if that was due to her age or the hysterectomy. She also mentioned that she has a number of friends that have had it and have had no problems.

So I'm kind of going back and forth. How common are these problems after a hysterectomy?

Well, I'm kind of running off at the mouth here. It's just so nice to have someone else to talk to about this. Talk to you later!
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  #4  
Unread 06-19-2005, 06:33 PM
possible hyst in Aug 05

Yes I do have okay periods and bad periods. My last period I bled for longer but I only had cramps for the first 2 days and not severe enought to stay home from work. But, my the period before this one I was cramping for 5 days and on the 5th day is when I had to stay home from work because of the pain. My question to you is do you want to have to wonder each month how bad it's going to be? And to have to arrange your life around your pain?
Yes, I'm having a hysterectomy on 8/15. I have made up my mind that is what I want to do to bring my quality of life to where it should be. I try to focus on all the women on this site who have had it and are so very happy with their decision. Yes, it's a painful recovery but I believe worth it!
Both my mother and grandmother had hysts in their 30's. I have a good friend that had one three years ago and swears it changed her life.
I would be interested to know what your doctor says, okay? My doctor said that she would do the vaginal hyst with the lap. I would be curious to see what your doctor's preferred method is. The adenomyosis is interesting...is that what causes the painful bowel movements? I hate to sound so graphic but even today ( a non-period day) I had a bowel movement and then had cramping and back pain after. Does that ever happen to you? Good grief, I feel like I'm falling apart! Anyway, keep me posted on the visit to the doc. (oh, and my name is Cyndie and I'm from Sandy, UT) Daisy is my wiener dogs name!
  #5  
Unread 06-19-2005, 08:29 PM
possible hyst in Aug 05

I haven't had to stay home because of a period since highschool so in that respect I'm lucky. They are not painful enough for me to leave (although I wish I could bring my hot water bottle to work with me). I do have to take a moment when a bad one hits. I still feel like vomitting and I break into a cold sweat sometimes.

It's usually on the day my periods the most painful and the most heaviest that I have pain with a bowel movement. It does feel like everything is coming apart down there! During the month I have cramping too but not as bad as that one day, boy I'll tell you!

And when you've had children talking about bowel movements just doesn't seem so graphic anymore, lol.

And that's just it...falling apart. More is happening to me now then it did 10 years ago so I can't help but wonder what its going to be like 10 years into the future...my, my.

Looking back on our "conversations" I get the impression that don't want to try drug after drug or procedure after procedure which is how I feel.

And you're right about wondering what this month will bring. Will I spot this month or will it be normal? Please let it be normal! Will I have cramping throughout the month? You are so right. I just don't to go in so that a, b and c will be fixed but end of having trouble with w, z, y and z. Know what I mean?

Ahh, well. I'll find out more tomorrow and will keep you posted. And it's been nice chatting with you Cyndie. My name is Shelley and I'm from Winnipeg, Manitoba (Canada). Talk to you later and thanks!
  #6  
Unread 06-20-2005, 04:16 AM
possible hyst in Aug 05

Hi rsford31

I'm so sorry you are having these problems and I understand that this can be a tough decision. I had my hysterectomy for endo so I do understand some of what you are going through.

It is very hard to know what your outcome will be if you do decide to have a hysterectomy. Some women feel just fine with little complications and other women may end up with problems.

Since you have been diagnosed with endometriosis have you discussed with your if you would be keeping your ovaries or removing them? I personally feel it is best to keep them if they are healthy, but when you are dealing with endo I have read that you may have a higher success rate if they are removed. Estrogen feeds endo and the ovaries can stimulate any microscopic endo that may not have been removed during the surgery. Here is an article to read about this.

http://www.endo-resolved.com/treatment.html


If the ovaries are removed you would be in surgical menopause and some women have a hard time finding the right HRT to help control their menopause symptoms. That was my biggest struggle after my TAH/BSO. I physically healed fine but was thrown for a loop with all the symptoms of menopause and had a hard time finding something to control all my symptoms.

I wanted to share some articles that may be helpful. It may be helpful to get another opinion just to be sure you have tried all the options available. I also understand that you do not want to try different drug therapies and different procedures which is definently your choice, but I believe it is best to know all the options available so we can make an informed decision.

Some women have found that they continue to have problems with their endo pain even after a hysterectomy. :

( Progesterone to treat endo

Medications to treat endo

Surgical excision to treat endo

Endometriosis resources

Best Wishes

  #7  
Unread 06-20-2005, 01:11 PM
possible hyst in Aug 05

rsford31 and Daisy01,

Thank you so much for posting and talking about your experience.

I have missed at least a day of work every month for the last few years. I too have had painful bowel movements> I thought I was CrAzy. I would be on the floor in the bathroom on my hands and knees. I am so glad I am not the only one!
I have heavy clotting- which always brings severe pain.
I take prescription strength painkillers- they work but leave me unable to drive or walk or think.

I finally talked to my Dr, did the ultra sound, and found fibroids and cysts. I was so happy. I was so afraid they would tell me everything is fine now go home.
About a month after discovering my new cyct friends one decided to rupture. Trip to the ER- cat scan- thought it was appendix- nope just a cyct.
My Dr. said I need to have a hysterectomy, and I am OK with that. Get it done and over with. I do not want to go through years of treatments that don't work.

I am 38 have 5 children two step children and 3 grandchildren. I am past the baby stage.

My Mom, 2 sisters, both aunts and Gma have all had it done and are sooo happy.... with exception of my sister. They left one of her ovaries in. That ovary is now a huge cyst.

I have my first appt with a GYN the middle of July. How do I explain to him- how do I make HIM understand I don't want to try different drugs and treatments. I just want it out!

one post said you had a 'slew of questions.'
What questions? I am making a list and don't want to leave anything out.

THANK YOU! THANK YOU! THANK YOU!
  #8  
Unread 06-21-2005, 07:11 PM
possible hyst in Aug 05

Thank-you troubled tabby for the information.

Up until 2 years ago I was living fine with my endometriosis. I know there are women out there who have it much worse. I feel mine is manageable. Yes I have painful periods that last about 7 days, yes I have cramps on and off througout the month and yes I have huge clots but it was manageable. This was "normal" for me.

Then I started spotting. I finally went into the doctor, got an ultrasound and found out that I had adenomyosis and a polyp...correction, they think it is adenomysosis and a polyp (what if it's something else?). And now I've discovered I'm anemic. So, I'm wondering, if I don't do something now, while I'm "young" what's going to happen ten years from now?

In all the literature I've read it sounds like the most effective treatment is hysterectomy for adenomyosis. There's Lupron but it's stated that it's only a temporary solution (and given what I've read about the side effects, no thank-you).

From what I've read about endometrial ablation this will relieve the heavy bleeding but will it relieve the adenomyosis itself? I can get the polyps removed but there's a chance they could grow back. How many times do I go back and forth to the doctor's trying this medication and that procedure? I don't want this to run my life and I don't want my life to revolve around the doctor's office if I can help it. It already seems to be doing that.

I would love to keep my ovaries and my cervix. Heart disease and stroke run on my mom's side. So, I don't want to lose my ovaries for that very reason. Take HRT? Sure, but what about the risks of breast cancer? And the new study that HRT actually doesn't help the heart? My paternal grandmother had breast cancer.

I'm trying to be proactive.

And I know it will be painful. I've had an ovarian cyst removed and a caesarean (spelling?).

My main concerns are ovarian failure, incontinence and decreased sex drive (in that order ). Yes, some women have reported no problems in any of these departments (my aunt being one of them) but what if I fall into the percentage that do have problems? This is what I'm struggling with. Do I leave this and see where it goes? Or do I take the chance and do something while I'm "young"? My kingdom for a crystal ball to see into the future!

carolnco, the questions I have for my doctor that I can think of off the top of my head (I've misplaced my list) are:
How accurate is the ultrasound I had?
How else can you confirm this diagnosis of adenomysosis and polyp other than waiting a million years for an MRI?
What is the liklihood that this is something else i.e endometrial hyperplasia?
What other options are there for me given I have adenomysosis and a polyp?
What sort of procedure does he/she do? Abdominal, vaginal. lap?
If I have extensive endo is it possible for you to remove most if not all of it?
I've read that there could be risk of my bladder falling. What can be done to prevent this?
I've read that there is risk of nerve damage to the bladder and the colon. Have you had any women that you have operated on have developed these issues?
I've read that there is risk of ovarian failure. Is there anyway you can prevent this from happening during surgery?
I've read that even if I keep my ovaries that I may have temporary menopause. What sort of medication should I take if this should occur?
How long will I be in the hospital?
I find I get violently ill after waking up from surgery. Is this from the anesthetic (spelling?) or the morphine that I'm usually given?
If I continue to get sick what can I take?
How soon can I go back to exercising?
I have stairs in my house. When I can I use them?
I have a sitting down job. When can I go back to work?

I may think of more, but that's all I have for now.
  #9  
Unread 06-22-2005, 04:09 AM
possible hyst in Aug 05

HI rsford31

You still have many valid questions and a very hard decision to make.

Please take your time before deciding and do alot of research. There is a wonderful resource section at the top of the message boards that may help answer some of your questions. Just click on the word "resources". There is an entire section that deals with HRT and breast cancer, heart disease etc :

Also another great place to help answer some of your questions may be "checkpoints" also located at the top of the message boards under the Hystersisters Logo. Of course you can always post your questions here and get many wonderful replies from many wonderful women who have already had their hysterectomy.

Most of these questions should be discussed with your doctor before you make your decision. I have discovered reading on the message boards that doctors have different approaches to handling the same diagnosis, so I like to encourage getting another opinion just to be sure that you have everything answered. Also making a list to take to the doctors can be very helpful.

There is no going back once you have the surgery and it is important to be very comfortable and knowledgeable with your decision so that you are prepared for any outcome.

Some of these questions even your doctor can not give you a 100% answer. Unfortunately many women do not know the final outcome until after their surgeries. I have read that it is a high percentage of women that are happy they had the hysterectomy and they do not have further complications. The hard part is the women that fall in the other percentage and feel it was the wrong choice.

Best Wishes

  #10  
Unread 06-22-2005, 08:24 AM
possible hyst in Aug 05

rsford31,
Thank you for the list of questions! I know this will help me at my appt. I added a few questions as well. I never thought about some of the questions.
I am still sure I want to have this surgury done- I do not want to go through years of possible cures just to end up in the same place I am in now.
I did not start having problems until about 5 years ago, it has gotten worse every month. I am worried about what will happen in 5 years if I keep waiting.
After reading so much information here I do know I have A LOT to learn.
Thank you for helping.
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