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Had enough with BCP as my form of treatment
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08-02-2009, 08:39 PM
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HysterSister
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Posts: 18
Hysterectomy: February 13th, 2015
Ovaries: Undecided
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Had enough with BCP as my form of treatment
Hi, I've been on seasonal for almost 2 years now and I've had enough. I'm tired of still getting pms cramps on the months that I don't get my cycle. And then in the month that I'm supposed to get it, I spot and cramp almost the entire month. I told my gyn that I'm ready to get a hysterectomy. She's not too keen on the idea of me having one cause of my age. But I don't feel that I'm that young, my grandmother was 4 years younger than me when she had hers. She is sending me for another sonogram to see what's causing my pain. But it's just going to be like all the other ones, showing nothing at all. After the sonogram she did agree with talking about getting the hysterectomy, like which hospital and what not. I just really want to get this all over with. I feel so done with all the pain and suffering.
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08-02-2009, 11:58 PM
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Posts: 30,771
Hysterectomy: February 4th, 2002
Surgery Type: TVH
Ovaries: Removed both
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Re: Had enough with BCP as my form of treatment
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Originally Posted by WonderingSoul
I feel so done with all the pain and suffering.
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I hear you, (((WonderingSoul))), but do keep in mind that for some women, a hysterectomy can end up as trading one set of problems for another. For example, I've had four other surgeries since my hysterectomy, which I thought was going to be my 'one and only' and prevent all future problems. Also, surgical menopause has been a difficult experience, to put it mildly, and I've been lucky - I found HRTs that work for me about as well as I can reasonably expect them to, they're just not the same as healthy ovaries. (By the way, even if you keep your ovaries, there is a chance that they may stop working after the uterus is removed, forcing you to deal with an early menopause and all that entails.)
I had long, heavy, painful periods my entire life until I had a hysterectomy for severe prolapse at 45, other than a few years in my early 40s when I was on depo Provera. I thought it was the answer - I felt great and never had any bleeding at all, although some women's results may be different. It was the answer, all right - until I was diagnosed with breast cancer at 47 and again at 49. Turns out it had been a bit of a ticking time bomb.
I mention my experience only to say that, while I hated my periods, hated the cramps, hated the bleeding... in hindsight, I'd take it all back today if I could have all my body parts back and not be terrified of another cancer diagnosis at any time.
Please consider getting a second opinion, and perhaps a third. Take your time, and do your homework, and good luck with whatever you decide to do.
s,
-Linda
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08-03-2009, 05:14 PM
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Guest
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Posts: 352
Hysterectomy: July 26th, 2004
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: Had enough with BCP as my form of treatment
I would also recommend patience. My reasons for hysterectomy were different (endometriosis), but I also had to have surgery again later. I kept one ovary in the hopes of not needing hormones. Three years later I had a cyst the size of a grapefruit removed along with the ovary. I am now on hormone patches which work well for me, but I still have pain now and then. Is it endometriosis or just scar tissue?? I don't know. Just understand that a hysterectomy is not necessarily the answer to everything.
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08-03-2009, 05:36 PM
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HysterSister
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Posts: 18
Hysterectomy: February 13th, 2015
Ovaries: Undecided
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Re: Had enough with BCP as my form of treatment
Thank you ladies, but my patience has run out. I don't feel the need to deal with endo any longer. I no longer plan on having more children so I really don't see why I should suffer with endo any longer. When I had the lap done, all they did was detatch the scar tissue from my ovary. No where in the finding did they actually mention that they removed it. Even my gyn thinks they never totally removed the scar tissue the endo had caused, and just detached it and left it there. Sounds silly, I know but the reports just don't indicate anything else. I've been dealing with endo for years, since I was a teen, and just had no idea because I was never officially diagnosed until I landed in the hospital in '07. When I finally found out it was endo, a lot of my pain and suffering that I endured for years began to make sense. I don't know what other types of alternatives I truly have. I don't see the need to head towards lupron, since all it really does is put in a temporary menopausal state. For that I might as well go the whole nine yards.
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08-03-2009, 06:20 PM
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HysterSister
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Posts: 152
Hysterectomy: January 12th, 2010
Surgery Type: TVH
Ovaries: Kept 1 or both
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Re: Had enough with BCP as my form of treatment
I feel your pain (literally) WonderingSoul and great name!
I have been suffering my entire life also, off and on since age 11 when I had my first cycle. I had my first lap in 07 for cyst removal but no removal of endometriosis until 7/10. So it’s too early in the game to know if the last surgery is working for me, but I'm keeping my fingers crossed. I'm pretty aware of surgical menopause and when people tell me to "just take everything out" I remind them that I don't want the unknowns. Right now I know what to expect and I can manage it, although it takes a lot of energy.
So I see my doctor on Wednesday and I'll be on BCP to manage the endo. So hopefully that goes well. I am afraid of Lupron but it seems to get mixed reviews. If I'm desperate enough I'll try it.
Maybe you should consider seeing another doctor that can discuss your options and the pros/cons for each course of treatment. I just think these conditions, with the exception of cancer, have several treatments and we all have to weigh our options.
I wish you luck and if you discover the "miracle cure" don't forget to share:-)
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08-03-2009, 06:47 PM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: Had enough with BCP as my form of treatment
((WonderingSoul))
Are you seeing an endometriosis specialist? Because a hysterectomy is not a cure for endometriosis! In lieu of a miracle, an endo specialist could offer you the best outcome as s/he should have exceptional skill when it comes to recognizing and removing the actual endometriosis and the adhesions. Any endo that is missed or intentional left behind can grow and spread and continue to cause pain and symptoms down the road.
I did have my hysterectomy for endometriosis and have had subsequent surgery with a specialist as I had pelvic pain and symptoms for years following my hysterectomy because my surgeon had not been able to remove all of the endo. They key for treating endometriosis is removing the actual endo.
I wish you all the best as you work with your medical team to determine the best treatment route for you!
in there!
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08-04-2009, 12:44 PM
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HysterSister
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Posts: 18
Hysterectomy: February 13th, 2015
Ovaries: Undecided
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Re: Had enough with BCP as my form of treatment
Thanks, Weiser, sadly there are no endo experts in NYC that take my insurance. Maybe once I get switched over to my husband, we're newlyweds, I can find one that does take his insurance.
latriza, good luck with the bcp helping your endo.
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08-04-2009, 07:46 PM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: Had enough with BCP as my form of treatment
When you get your insurance issues all changed over, it might be worth it to consider seeing a specialist even if s/he is not covered by your plan. I saw mine on the out of network portion and then appealed to get additional coverage. I still had to pay a lot more than if he had been in-network, but there were no in-network physicians who could offer me what I needed! I had already had surgery and medical treatment from in-network physicians and I was not better! Paying extra to go to a specialist was cheaper than continuing to try to see this doctor and that one and try this treatment and that one, just because they were covered better by my insurance plan.
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08-13-2009, 05:51 PM
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HysterSister
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Posts: 10
Hysterectomy: December 17th, 2013
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Had enough with BCP as my form of treatment
Definitely check on the out of network benefits with your current insurer. Even if the provider doesn't take your coverage, you may be able to pay up front and then submit the claim to the insurance yourself for reimbursement. Also, most insurances have a benefit where if there there are no in-network providers for your specialty within a certain mile/drive time, they will cover another provider in another location at the in-network rate. Its called a "Parity". Don't give up!!
As an aside, I was also on Seasonale for about 2 years (5 years ago) and I truly think it's what started this whole mess. I have felt completely out of whack ever since. I don't have endo, and don't have much experience with it, but have you considered a different kind of birth control?
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08-13-2009, 05:54 PM
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HysterSister
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Posts: 18
Hysterectomy: February 13th, 2015
Ovaries: Undecided
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Re: Had enough with BCP as my form of treatment
Sadly, until I'm on my husbands insurance, I'm stuck with the insurance I have and the doctors who accept it. They don't offer out of network coverage at all. I'm going to talk to my doc about the Mirena IUD. I was supposed to call her today, but I forgot.
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