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Endo & Debating the Big H Endo & Debating the Big H

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  #1  
Unread 07-01-2005, 01:53 PM
Debating the Big H

Hi. I'm pretty sure I want to have a hysterectomy, but am willing to listen to any advice anyone wants to give.

I have thought about it for YEARS and have just now gotten started on some insurance, making the actual event a REAL possibility. I found myself wanting a hyst desperately before it could actually be a feasable option and now I find myself wondering if I made the right decision and how to go about it if I did.

I am 28, soon to be 29 and am in pain daily. I live in an area that doesn't offer many choices on doctors or treatments and can't afford, nor handle, the travel idea. Because of where I live, the only "special" options as far as treating my endo is hysterectomy, natural treatments, cauterization or medication.I have used Lupron, it helped with my pain immensely, but my joints have suffered (I suspect from the six months on Lupron) but have no proof to link the two. I don't want to do it again. I've used Natural Progesterone Cream and had some success but it has quit working, so I've stopped. I used bcps when I was 17-21 and it helped slightly.

I'm quite sure I have a prolapsed uterus, but haven't had it looked at. There is a bulge in my vagina and I have problems with bms and frequent urination, which are symptoms of a prolapse.

My periods have been getting more and more irregular and my bloody bowel movements have become cyclic. For an example of my irregular cycles, I had my last one on June 18. Today is July 1 and I'm having the cramping and urgent bowel movements that occur prior to my cycles. I haven't yet made any doctor's appointment, but will soon. Please give me some advice ladies... Thank you for any help!
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  #2  
Unread 07-01-2005, 11:58 PM
Endo & Debating the Big H

New body,

I don't have any advice. I am rather new to all of the this. I first heard the word endometriosis last year in regards to myself. Knew that there was a condition out there with that name but thank goodness it wasn't me. Live and learn.

Tell me more about lupron. My gyn has offered it as a possible treatment along with lap surg to clean up my ovaries and any lesions he could see. But the discussion we had left me believing that he thought for me that it would only be a temporary fix.

He also said that I could a hyst and get my ovaries removed. He said "It would be justified." But any decision had to be made by me.

Ran all this by my husband, he says "get a hyst and get it over with." Ran it by my primary doc, she says "I have had better luck managing some patients blood pressure after they get a hysterectomy. They feel better."

But the logical part of my head says "If I think that a course of Lupron is bad, what do I think surgical menopause is going to feel like?"

AHHH!

Sorry, I know you want advice. I know that I am selfishly seeking a sounding board.

Curious to know. Is fertility an issue for you?

Dee
  #3  
Unread 07-02-2005, 08:41 AM
Endo & Debating the Big H

Hi to both of you,

I had TAH/BSO in Feb for various reasons and when they opened me up they found endo everywhere so ended up with it all out. I feel like a different person now. I have so much energy, the awful pain is gone and it was the best thing for me. Having said this I must add that there were some trade offs. Sudden menopause is no joke and this surgery is a major one and should not be taken lightly, I just thought I'd tell you my experience.

I am on the Climara patch which is estrogen only and feel pretty good on it although some women aren't so lucky. My experience was a positive one even though I am still coming to terms with the loss of my ovaries. Good luck to you both.
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  #4  
Unread 07-02-2005, 12:36 PM
Endo & Debating the Big H

Hi. Thanks for both of the responses!

Dee,

Lupron is only a temporary fix. It is similar to menopause. I had the night sweats, mood swings, hot flashes, cold sweats, etc... but still had a light period while on Lupron.

While I had a really good experience of what life would be like pain-free while using Lupron, it was only temporary and that's a LOT of money for a momentary life without pain.

I feel that my joint pains got worse after using Lupron, but haven't discussed it with a doc, as I've had no insurance and tried to keep visits to a minimum.

All I can say is RESEARCH your brain out before deciding on it. Also, if you do decide to try it, don't do the 3 month injection, just in case you're allergic to it. I've heard horror stories about that happening to some women. Didn't happen to me, but I know someone it did happen to.

Oh, fertility is no issue.

Hope this has helped...

Stacey

csafrica19-

Thanks for your input. It sounds as though you've had a good outcome. I'm not expecting life to be all peaches 'n' cream after a hysterectomy. Good stories are nice to hear though.

I wanted to ask you, what made you decide to start HRT? And did you start it immediately? I'm afraid that if I were to start the HRT immediately it would cause me more problems. So, I'm curious as to how you decided to go about it.

Thank you for sharing with me. It really means a lot!

Stacey
  #5  
Unread 07-02-2005, 04:56 PM
Endo & Debating the Big H

Hi Stacey,

After the surgery my gyno said I should try without HRT but I couldn't handle it at all, so after two weeks he put me on the second lowest dose of Climara patch and when I questioned him about it causing the endo to return he said in his experience it doesn't because the dose is so low.

I really wanted to increase my dose because I suffer so much with dryness of eyes and vagina. I do use a vaginal cream, premarin, and it helps on the days I use it but I feel dry most other days. My gyn said I should leave it for a while so my body can adjust to the new situation. Then he may consider upping the dose.

When I questioned him about what happens if the endo returns, he said just to stop the estrogen (easier said than done) and the endo will dry up or receed.

Another thing, one of the main reasons I had the hyst was a prolapse with my cervvix coming out of my vagina. I know it was very unpleasant.

Ultimately the decision is yours so you must be happy with what you decide. You are so young but you do need to have a good quality of life, so you have to think hard about it. I wish you all the best and hope this has helped you.
  #6  
Unread 07-02-2005, 05:14 PM
Endo & Debating the Big H

csafrica19-

Wow. Thanks for sharing that with me. It does make sense to use a low dose of estrogen, I was just scared of what it COULD do.

I do need to make this decision based on quality of life. It's just scary as all get out to undergo such a major surgery.

I have a prolapse as well. I'm not sure what has fallen, but something has. I have a feeling that the pelvic floor just gave out because I have symptoms of both bladder and rectal prolapse, as well as a bulge in my vagina.

Thank you so much for "talking" with me!

~Stacey
  #7  
Unread 07-04-2005, 03:03 PM
Endo & Debating the Big H

[color=Purple][font=Comic Sans MS]Hi Stacy!

I'm so sorry you're going through this! I do feel your pain. I battled with Endo for over 6 years. After my first Lapo, I went on a 6 month series of Lupron. Had more problems, had a sencond Lapo then another 6 months on Lupron. I also tried numerous bcp's will little to no success.

The Lupron causes bone deterioration. Did your DR give you Add-Back Therapy? I was put on Norithendrone (sp?) while on the shots to help with bone loss and menopause symtoms. Unfortunately, Add-Back can only help so much. I now have the onset of osterporosis thanks to a total of 12 injections. Lupron makes your body think you're going through menopause, I'm sure you found that out.

Because of the Endo, failed treatments and surgeries, I had to have a hyst. Today is day 6 since my surgery and other than healing from the procedure, I have no other pain. (Except in my joints but that will always be there.)

I luckily have a wonderful DR who listened to me and was willing to try anything to avoid surgery. For me though, a hyst. was the only answer. But I did a ton of research and read absolutely anything I could get my hands on before making my decision. I had to figure out if surgery was the best thing for ME and if it was going to improve my life.

That's something to consider. Will a hyst make your life happier, more productive, healthier?
I have my Endo story posted in the Endo/Adeno forum, it may be very close to yours with the exception that I have had my hyst. If you need anything or have questions, I'll do what I can and I know there are so many supportive women here that know more than I do. I hope that whatever choice you make will help you and get you started on a happier life free of pain.
  #8  
Unread 07-04-2005, 03:21 PM
Endo & Debating the Big H

hi there saph here i have endo and have done for many years i have had 2ops and many treatments i have 3 children. there is no more they can do and i am in constant pain bleeding 3 weeks out of4.so hyst is only option. but this is only how i have been i am 31. i hope you can find the right decision.i am from the uk.
  #9  
Unread 07-04-2005, 09:50 PM
Endo & Debating the Big H

My goodness my situation was so similar to yours. I suffered for many years waiting until I could get insurance to go ahead and proceed to get a hysterectomy. I knew for many years that's what I wanted and what it would take to live a pain free life. I didn't only have endo and adeno, but fibroids really bad. Which could have something to do with your bowel problems. I know it was mine. The doctor wouldn't even touch me until the fibroids were shrunk by injections of Lupron. I had too many and too big. My uterus was the size of a 5 month preg. and even after the injections he still took out a fibroid the size of a big ball. My husband got to see it and was all fasinated by the size.
I realize you have a big decision to make but I can tell you it was the best thing I've did and I can't even have any hormones and I still think it's the best decision I made.
Good Luck,
Karen
  #10  
Unread 07-05-2005, 01:00 AM
Just an idea

Hi all

I friend of mine, she is 21, has also battled with endo for years. Because of her age etc, the docs did not want to consider a hyster unless as a last option. Her gynae prescribed a intra-utrine "birth control" that lasts for 5 years and during that time, you also do not have a period. For the life of me, I cannot remember the name, it starts with a "M". She has had it in for approx 18 months now, and is pain free and doing well. Perhaps you should have a look at this as an option.

Kind regards
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