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room for another adeno sufferer here?
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10-12-2009, 07:38 PM
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HysterSister
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Posts: 163
Hysterectomy: November 4th, 2009
Ovaries: Kept 1 or both
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room for another adeno sufferer here?
Hello Sisters,
I've been lurking here on and off for over a year... I was first recommended a hyst. 4 years ago for heavy flow, cramps, clots, bleeding through clothes (i once had to run my carpet cleaner due to flow!!), ruined vacations/parades/parties and general menstrual misery. No hormone treatment worked after I had my 2 children. I couldn't imagine a hyst./possibility of never having another child so I just put up with it for the next couple of years. My GYN (male) is BAFFLED as to why I hesitate to have a hyster.
My periods were always bad but they got so much worse after I had my 2 children. As did my migraines.
I had an IUD scheduled for last fall but had to cancel due to finances. (I was only given a 50% chance of it helping me out as it was and there was NO insurance coverage) I was told an ablation was a waste of time and money. I couldn't even talk about a hyster. without getting teary.
I have a dx of adenomyosis as of last year - when I began to lurk here. I searched for alternatives. I've tried just about everything. We had an incredibly rough year with all 4 of us having surgery and my son was dx with type 1 diabetes. I just can't afford to be out of commission for 6-10 days a month. I need to be able to do a better job with my family and chronic care. My husband is also chronically ill and in pain.
I have lots of left ovary pain all month. I bleed more than I don't each month, often I have no notice. I'm afraid to wear anything but black pants! Sometimes spotting sometimes gushing. Swollen belly, tender to the touch. Burst cysts on left that I should've gone to the ER for...
I go to the GYN tomorrow to discuss options but I am ready to not be in pain, bleeding and miserable anymore. I've seen a homeopathic Dr for years as well. Even she has said she "wouldn't blame me" for getting a hysterectomy at this point. I was an infertility patient so thinking of removing all these precious organs seems like such a betrayal...
Are there adeno girls out there who have had success with procedures other than hysterectomy? I've read so many are so happy they went ahead with the hyst.
I'm scared about surgery - about complications, recovery, my family's ability to deal with it all.
I'm worried I might feel worse or regret the hyster. and it's not reverseable.
Any thoughts are appreciated~
I'm not entirely sure if I should be on what forum. Meanwhile - thank you all for posting your stories, you have no idea how important you have been in my decision process along the way.
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10-13-2009, 01:34 PM
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Guest
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Posts: 10
Hysterectomy:
Surgery Type: SAH
Ovaries: Undecided
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Re: room for another adeno sufferer here?
Hi there- I think I'm in a similar boat. My symptoms are like yours, just not quite as bad, which makes me wonder if I'm doing the right thing.
I have pendunculated fibroids, endometriosis, and potentially adenomyosis too. Lots of pain throughout the month and heavy heavy bleeding, and constant exhaustion. I rarely if ever get hungry, and yoyo between constipated and having the runs every day. I had a cryoablation in April which slowed the bleeding a little but the pain hasn't gone away, which has lead to my decision to go with LSH on 10/29. I'm hoping to keep my ovaries and def. want to keep my cervix.
I'm worried about the same things, complications, life after, etc. But I have several friends that have had hysterectomies and are very happy with full lives, and have happy husbands. So I'm hopeful.
Good luck on your journey.
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10-13-2009, 02:03 PM
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HysterSister
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Posts: 309
Hysterectomy:
Surgery Type: TAH
Ovaries: Undecided
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Re: room for another adeno sufferer here?
Freem,
I was diagnosed with adeno 20 years ago... but at 28 couldn't begin to think about a hyst which was recommended due to pain and heavy cycles and the fact that my doc said I'd never be able to have another child...
so I waited and suffered for another 5 years then agreed to try bc to keep it from getting worse... lo and behold.. I couldn't start as I was pregnant again even though it was "impossible"...
after the pregnancy and nursing, the pain kept getting worse, lasting longer and heavier so decided to try the bc again... failure... bled more and longer pending the type (depo had me bleed for 90 days straight and since I was told that I needed a second 3 months for it it kick in, I bled another 30 days until they added some oral estrogen and that was the end of bc)....
life has been, well, life, and there never seemed to be a good time for me to pursue a hyst, even though there was no love b/n me and my uterus... subsequently diagnosed with endo and small fibroids... bringing us to many years of just living with the pain & heavy cycles....exercising frequently to keep endorphins high... and lots of Advil....
Would I say the exercise helped? probably
Would I say, I'm glad I postponed ? prior to the pregnancy, without question.... now? I don't feel that I had much of a choice as lots of health issues and other life circumstances prevented of which it sounds as if you can identify...
Will I be glad to finally have it over? Yes!.... but that is a decision you must weigh... when the time feels right and you have no doubts about the decision...
Best of luck in making your decision,
Kathy
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10-13-2009, 06:44 PM
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HysterSister
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Posts: 365
Hysterectomy: January 12th, 2011
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: room for another adeno sufferer here?
I am trying Lupron injections as a last resort. I've only been on the medication for a month and my pain is a bit better but has been replaced by horrible headaches, much worse than when I took Aygestin, I'm bleeding again which I didn't have on the Aygestin, and the hot flashes and mood swings are kicking in. I've heard that Lupron is usually prescribed for 3 months prior to a hysterectomy so I guess I'd have to take it anyway, but it sucks.
I know I can't keep taking NSAIDS for the pain- I've done that for years and my tummy lining is taking a beating.
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